Cytotek (misoprostol) put me in remission!

[ICLori]

http://www.ic-network.com/images/presidentsaward2006.jpg

March 14, 2006 - Not only did this post and several responses each individually deserve the Presidents award, but it also earned it's own message board to continue this discussion thread. I should have done this two months ago! I want to complement both Lori and Massagedoula for their comments about the medication, about safety issues and IC Lori for sharing her story so openly and willingly! - Jill :)

It's been almost two weeks now that I've been in remission from the Cytotec, so I think it's safe to say this remission will hold.

I had almost given up hoping I would find my miracle - what a joy to be completely free of bladder pain!

My hubby was commenting today, that this was the longest remission I have had - all the other meds that only covered the IC pain instead of fixing the underlying problem, always ended up making me worse.

He's right - this FEELS completely different from the other times. This medicine is fixing my problem - my prostaglandin pumps are now pumping out the mucous and other juicy stuff that makes up my bladder lining, and my lining is restored and functioning again.

I drank a HUGE glass (16 oz or so) of lemonade this morning - no bladder pain, no frequency. I'm amazed by how much urine it now takes to trigger an urge to urinate - my bladder is normal again!

I just am amazed by the difference. I love cytotec! And thank you, Norm, wherever you are, for alerting us to cytotec and how it can help many IC'ers (at least according to the small studies that have been done.) It took me this long to find a doc willing to prescribe it to me, but thank the lord, I found one and am in remission because of it!

May everyone here find their miracle, and their remission.

Blessings, Lori

[Katrina]

Wow Lori...that is ammazingly good news....for the huge amount of suffering you have gone through you deserve a very long remission!!!!!!!! I hope it is permanent!!!!!!
:grouphug: Thanks for sharing!
:kiss:

[ICLori]

Thanks, Katrina! Well in the one study I read, 87% of patients with severe IC responded very well to this drug, with 75% continuing to respond well one year later. I do not know why a couple of patients got worse again....so that is worrying me a bit. But I hope I will be part of the lucky 75% that got better (I'm already part of that!) and stayed better. I hope I will be like Norm's wife who went into remission and stayed in remission for...I think he said it was 3 1/2 years at the time he wrote? And hopefully she is still in remission of course.

Oh gosh if this med gives remission (hard to tell from the study, it says they improved but by how much?) to 75% of IC'ers who take it....that would make it one of the more effective treatments, for sure.

The main problem I see with it is that people are going to have a problem with it because it can cause miscarriage. You have IC'ers who want to become pregnant, so they can't take this. Or who have moral objections to any form of birth control which would have to be used with this drug so that miscarriage would not happen. So already there is a big section of ICers who would not want to take this drug.

But for those of us who have no problem using birth control, and especially those IC'ers who have had hysterectomies or tubal ligations so there is no chance of pregnancy, this could be a very useful medicine I would think.

You know I went into remission the month I was on the Atkins diet. I was eating tons of red meat, butter, cheese, eggs. I thought - just a coincidence, how could meat make my bladder heal? Well as it turns out, these foods all encourage prostaglandin production in the body (in the lining of the bladder too.) Most of the time docs warn against those prostaglandins as they cause pain and inflammation in the body. In fact I thought prostaglandins were all bad - didn't know they did anything good for the body at all! But as it turns out, they play a vital role in providing mucuous and repair for the linings of organs. Maybe that's why so many of us have IBS as well as IC - if the lining of the bladder isn't being repaired by the prostaglandins because they are shut down, then the same thing is happening in the stomach, the colon, the lungs, you name it. I guess which organ fails first just depends on the individual susceptibility.

So I learned something from this...those "bad" prostaglandins aren't ALL bad! Now prostaglandins are my friend, LOL! :)

Well, keeping my fingers crossed that I will be part of the lucky 75%.

Boy I hope they do a bigger, more long-term study on this soon. I'm really curious now if the good results would hold up in a bigger study, you know? The small study seemed so promising. Plus of course with my positive reaction to this med, I'm naturally inclined to think that this drug has some merit for IC.

Oh I wish I could contact Norm somehow. I tried to PM him but I think he's not on the boards anymore.

Blessings, Lori

[ICLori]

It's easy to find out how long-term NSAID use can damage the stomach lining. But no mention of the bladder lining!

I have read, though, that the stomach, intestines, and bladder all are part of the same type of visceral tissue. So it only makes sense that this medicine would have the same kind of effect on the bladder lining that it does on the stomach lining, doesn't it?

Anyhow this is what it says about NSAIDS and the stomach lining...

Blessings, Lori

@@@@@@@@@@@@@@@
More seriously, long-term use of NSAIDs can cause severe gastrointestinal and liver damage. Prostaglandins also cover the lining of your stomach. NSAIDs prevent the production of more prostaglandins, allowing acid to seep through the lining. This can lead to the formation of ulcers, which can cause life-threatening internal bleeding.

[ICLori]

Aha, I finally found out what on earth misoprostal is exactly!

XXXXXXXXXXXXXXXXXXXXXXXXXXXX
(Misoprostol) - Misoprostol is a synthetic prostaglandin. Prostaglandins are substances naturally found in the body. In the stomach they are believed to protect the inner stomach lining.
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Well, okay, so in the stomach they protect the inner lining. Do they do the same thing in the bladder? I wish I could find a sentence where it says prostaglandins play a role in protecting the lining of the BLADDER. Because I'm guessing they do....

I wonder if this drug is ever given to people with ulcers in their bowel?

Blessings, Lori

Edited to add:

I found this saying that it protects both the stomach AND the intestines. Now if only I could find something that says, stomach, intestines and BLADDER! LOL! I am obsessed now!

The COX-1 they are talking about is the prostaglandins that protect the lining. The one that the NSAID's tend to inhibit/stop production of. That is why they starting creating those new drugs like Vioxx, etc. Because they saw the drugs that inhibited COX-1, were doing a real number on the stomach and bowel (and maybe the bladder?)....

@@@@@@@@@@@@@@@@
the "original" COX-1 enzyme is present in cells at all times, and functions to protect the lining of the stomach and intestines by stimulating mucous production.
@@@@@@@@@@@@@@@@

And more information

@@@@@@@@@@@@@@@@@@@@
Gastric/Peptic/Duodenal Ulcers: Prostaglandins are substances that are important in helping the gut linings resist corrosive acid damage. NSAIDs cause ulcers by interfering with prostaglandins in the stomach.
@@@@@@@@@@@@@@@@@@

Are prostaglandins important in helping the bladder lining resist the acidic urine?

I'm sure they must be important....I wish I could find a medical excerpt that says so! The bladder is the same type of tissue as the stomach and intestines....same kind of lining....

[massagedoula]

Lori,
You are very lucky to have found something else that helps you so much.
Even though you say that you don't respond to many of the standard IC meds, you seem to somehow find these little-known things (like the d-mannose) and now the cytotek that make you go into remission! Good Job!

I personally am one of those ICers that would never take cytotek. It is my own bias from being a midwifery student, hearing all the horror stories about it (used off the label as a labor augmentation drug.) But many of these things have to be weighed, and if I was in your situation (thinking about removal) I would definetly try everything first. And I hope that your remission is permanent and others that are thinking about removal will have the chance to use cytotek before surgery. If you keep in remission, you should ask your doctor to write up a case study about you and publish it in Urology or another medical journal so other doctors can know about it.

[ICLori]

Hi, Massagedoula, just curious, what horror stories have you heard about cytotek?

The only things I've been able to find are that it can cause diarrhea, gas and stomach upset, but that it usually resolves after a couple of weeks of use. Of course that all changes with pregnancy. I would NEVER use this drug if I thought I had a chance of becoming pregnant. And if I did by some chance become pregnant (not likely, being 44 and being on the pill) I would discontinue it immediately.

Have you heard stories of people having difficulties with this drug, using it as, for instance, a stomach ulcer drug as opposed to a labor-inducing drug? Or are most of the horror stories about its use on PREGNANT women?

I don't know...I think I will not stop taking this drug now, no matter what you tell me, to be honest. If I start having bad side effects, then maybe....

The d-mannose helped me because I was having UTI's on top of the IC. Now it is all so clear to me - without the prostaglandins pumping mucous to provide that protective barrier to the lining, my bladder was wide-open to bacteria. No protection at all. Like being a burn victim with no skin.

Now that my lining has healed, and I am no longer vulnerable to infections, I have stopped taking the d-mannose.

But, yup, my symptoms were always worse when I had a UTI on top of the IC...I guess that's true of most people here. That's why the d-mannose helped me.

I'm kind of glad I don't need to use it anymore - it was expensive!

Maybe my doc will write about me - don't know.

Of course there are already published studies about this drug helping IC patients with severe IC - that is how I was able to convince my doctor to let me try it in the first place!

So the information is OUT THERE - getting docs to USE that information and READ it is a whole 'nother story.

My doctor had never even heard of that study until I showed it to him. That's just how it is.

But if Norm was right in what he was saying, that a new, bigger study on this is being undertaken, then I have hope that something might come of this.

This really is doing more than helping me...I can't stress this enough...I am in COMPLETE remission from this. Amazing. I am very lucky! And looking back, it's pretty obvious to me that I gave this condition to myself by years of constant use of NSAID's, antihistamines, fish oil capsules. Not one doc ever warned me of potential bladder problems - only stomach problems (which I did indeed get - I got gastritis episodes on average of one per month. I would simply stop the pills for a few days, keep my tummy full of bland food, and then I was fine....)

Blessings, Lori

[ICLori]

P.S. One of my greatest fears is that I will not be able to find docs to prescribe this to me when I leave my current doc (we move lots in the military) because as long as I have a uterus, docs will always see me not as a person but as a walking baby factory.

I can't wait until menopause - I have NEVER wanted a child, never WILL want one, the thought of being pregnant has always horrified me, yet docs have always refused to prescribe various meds to me (Accutane, doxycycline) because even though I was on the pill I MIGHT become pregnant.

I suspect it took me two years and five docs to be able to try this drug because of my durned uterii (I have two of the blasted things, birth defect) and I sooooo look forward to being a person after menopause instead of just a baby-making factory in the eyes of doctors!

Blessings, Lori

[ICLori]

P.S. This is a link with the potential side effects of misoprostol. Maybe the company making the drug is not being honest about the side effects? But anyway what they list (gastrointestinal effects that usually resolve within a couple of weeks) don't sound so awful to me...not awful enough to stop taking the med anyway or not take it at all...

I did have very mild nausea (barely noticeable) the first day and for a couple of days there I had a bit of mild gas (no pain though, and no gas worse than when I drink soda pop) but I don't consider those horrible side effects. I mean, honestly, my bladder pain was WAY worse than a bit of gas....

Blessings, Lori

http://64.233.161.104/search?q=cache:JtJwZjeABnMJ:www.rxlist.com/cgi/generic/misopro_ad.htm+cytotec+side+effects&hl=en

[ICLori]

Oh gosh I see what you mean - there are real horror stories about misoprostol being used as a labor-inducing drug!

But since I am using this drug to fix my bladder and not to spew fruit out of my womb, I don't have to worry about any of those horror stories.

Although I am sure the story would be different if I could bring myself to even seriously entertain the idea of allowing pregnancy to happen to me. When I hear of a pregnancy, my mouth forms the correct words - "congratulations!" But in my mind I think "Oh I am sooo sorry....."
Blessings, Lori

P.S. Whenever people ask me why I haven't had children, I usually think "because birth control WORKS when used as directed?" But of course I never say that....

[massagedoula]

Whoa! You have 2 uteruses (uterii)?! That is crazy! Are they both functional?

The horror stories that I have heard have all been from the off-label use of cytotec. OBs routinely use this drug to induce labor by breaking off a tiny piece of it (1/4) and manually inserting it into the cervix. There have been over 30 women (I don't remember the actual number) that have DIED as a result (from labor complications that they most likely would not have had without cytotec used as an intervention.) Most of the complications were uterine rupture and many babies have died as a result, as well as many women had to get emergency hysterectomies.

Try http://www.motherjones.com/news/outfront/2001/01/labor.html
or http://www.midwiferytoday.com/articles/cytotec.asp
or http://www.midwiferytoday.com/articles/misoprostol.asp

For you as you are using it you should be totally fine. However this drug has a very bad reputation among midwives (remember I am a student midwife) and so I am naturally very wary of it.

[massagedoula]

You posted at the same time as me!

[ICLori]

Oh, I understand! Those are the horror stories I also ran into when I did a search.

Both of my uterii are apparently functional. I am a didelphys. I have two vaginas, two cervixes, and two uterii, both fully formed and normal. I have periods from both of them, at the same time each month (heavy flow). One fallopian tube is attached to one uterus, and one to the other. Theoretically it would be possible for me to become pregnant and to bear children.

One woman with my condition (mullerian tube defect) gave birth a few years ago to two children - one in each womb - not twins. She named the children hope and faith. It made front page news around the world.

Since the very thought of being pregnant and having a child makes me want to walk in front of a moving vehicle, I have RELIGIOUSLY avoided any chance of becoming pregnant (this girl NEVER forgets to take her birth control pill! Been on them all my life since age 18!) and so I really haven't "tested" the equipment so to speak.

Blessings,
Lori

P.S. this is a link that explains more about my condition....

http://www.gfmer.ch/selected_images_v2/detail_list.php?cat1=17&cat3=311&stype=d

P.P.S. If you ever run into one of these in your line of work, you might want to suggest that the woman be monitored by doctors, also, as this condition makes for a high-risk pregnancy....

What is a
Uterus Didelphys?

Overview

A uterus didelphys is a double uterus sometimes associated with a double cervix. In approximately 75% of cases, a thin wall separates the vagina into two parts.

Most women with a uterus didelphys experience no symptoms though they may experience dyspareunia as a result of the vaginal wall. The reproductive outcome of women with the condition is better than with other types of uterine anomalies, because of a better blood supply. The likelihood of having a successful pregnancy with a uterus didelphys is approximately 60%. However, women with the condition are at high risk of premature labor and spontaneous abortion due to an incompetent cervix. Surgical correction of a uterus didelphys is rarely indicated, but pregnant women should be closely monitored for proper cervical function.

Diagnostic procedures

A uterus didelphys can be diagnosed by:

Visual inspection of a double cervix
Manipulation during a pelvic exam
Treatment

Women with a uterus didelphys may benefit from cervical cerclage during pregnancy.
Surgical correction via metroplasty is difficult and reserved for a few highly selected cases.

[massagedoula]

Lori,
As a student midwife that sees many vaginas and cervixes, I am totally interested in your anatomy. Can I ask you some questions that you don't have to answer if you don't want to?

Can you describe the placement of the 2 vaginas/cervixes? One on top of the other or side by side? Is it possible to have intercourse with both or is one the main one and the other very small? How many people have your condition? It is called a mullerian tube defect?

[massagedoula]

We double posted again!

[ICLori]

Hi, sweetie, sure! I was thinking that in your line of work, you would be curious, because you'd want to know what sort of things to look out for, what problems could result, etc. In fact I just posted that!

My two vaginas are side by side, with a very thin, flexible septum that runs all the way up. One vagina (left one) is normal, and this is used for intercourse. The one on the right hand side is so small that I can not even use a tampon, and even a child's speculum causes me a lot of pain for an exam. The two cervixes and uterii, are, according to the MRI, normal in size and shape. During intercourse, the septum is kind of pushed against the other smaller opening and it is sort of out of the way so it's no problem. No pain during intercourse.

I have forgotten how many have this - I know most of my doctors say it's quite rare and they find me an interesting patient because of it.

I will go look up how common/rare this is.

Blessings,
Lori

[ICLori]

Well...this doesn't even really answer it but it's the best I could find. According to this no one is completely sure....but this gives some good info about various mullerian tube defects including mine. An interesting thing is that this condition can often lead to repeated loss of pregnancy...that's probably something to look for if a patient presents with a history like that...

Blessings,
Lori

(1) Defects in uterine fusion and resorption

The incidence of congenital uterine fusion defects is not well established since these defects are not readily apparent without radiologic imaging (or the equivalent). Therefore, the incidence rates in the literature have a potential selection bias, since they reflect a selected group of women (that is, a population selected to have the testing required for diagnosis). Understanding this, the available reports generally cite incidences of about 1 in 200 to 1 in 600 women. Therefore, these defects are not common but also not rare. About 1 in 4 women with a congenital anomaly of the uterus due to a fusion defect will have significant difficulty with reproduction, possibly including recurrent pregnancy loss.

Mullerian duct abnormalities include

septate uterus: a partial lack of resorption of the poorly vascularized tissue within the uterine cavity. The remaining tissue creates a wedge shaped septum in the fundus (top) of the uterine cavity. Implantation of an embryo onto this septum, and within a septate uterus, has a markedly greater chance of spontaneous abortion (miscarriage) compared with a normally developed uterus. There is also an increase in preterm labor and delivery as well as abnormal fetal lie or presentation (such as breech). Fortunately, the repair of the septate uterus is fairly straightforward and usually very effective, requiring an outpatient surgical procedure (hysteroscopy). Reportedly, repair of a septate uterus will improve the miscarriage rate from about 80-90% if untreated to about 10-15% following treatment.

unicornuate uterus: failure in development of 1 of the Mullerian ducts most likely due to a failure in the migration (movement) of the duct to the proper location prior to its time for fusion (resulting in its loss). The resulting unicornuate or half uterus has connection to only 1 fallopian tube since the other tube was to be formed from the "lost" Mullerian duct. The caliber (size) of the cavity in the unicornuate uterus is very important in determining the likelihood of reproductive success. Generally, a unicornuate uterus is associated with the highest rate of loss of any of the congenital abnormalities of uterine fusion. Unfortunately there is no accepted benefit for the treatment of these uterine defects. The unicornuate uterus is associated with renal abnormalities (renal agenesis, lack of a kidney, on the side of the missing Mullerian structures) and other reproductive problems (abnormal lie or presentation, intrauterine growth retardation, preterm labor and delivery, incompetent cervix). An incompetent cervix is essentially a "weak" cervix that tends to open without contractions during the course of pregnancy and can result in the delivery of a markedly premature baby or a nonviable fetus (miscarriage).

bicornuate uterus: a partial lack of fusion of the Mullerian ducts resulting in a single cervix and two uterine cavities in a "heart shaped" partially unified uterus. Reproductive outcome may be normal so no treatment is indicated unless reproductive problems are identified. Reports suggest an increase in spontaneous abortion (miscarriage), preterm labor and delivery, and abnormal presentation (breech). The patient with recurrent pregnancy loss, a bicornuate uterus, and treatment for all other identified causes for the losses may reasonably consider repair of the uterus. The treatment is surgical repair requiring a laparotomy with unification of the uterine cavities. The laparotomy requires a lengthy (few weeks) postoperative recovery period. Success with this surgery is generally quite good, improving the miscarriage rate from about 90-95% if untreated (and the cause for the recurrent losses) to about 25-30% if treated.

didelphic uterus: a complete lack in fusion of the Mullerian ducts with duplication of the uterus and cervix so that the patient has 2 cervices and two uteruses (each smaller than normal). Commonly also associated with a vaginal septum so that there are 2 separate vaginal canals at the top of the vaginal vault. Occasionally, one of the sides will become obstructed and result in pain as blood accumulates in the obstructed hemiuterus. There is an association with abnormal lie or presentation as well as preterm labor and delivery.

rare abnormalities: there are an entire host of intermediate or somewhat unique problems associated with abnormal development of the Mullerian structures. Isolated endometrial (lining of the uterus) or cervical agenesis (lack of development) are rare. Communicating and noncommunicating uterine horns that failed to fuse and canulate properly are possible.

(2) DES exposure in utero

[vm]

Lori - I have a bicornuate uterus. That is the one where instead of the uterus being shaped like an upside down pear - it is shaped like a heart. There are two "horns" at the top of the uterus. I did have one miscarriage at 5 weeks, a full term baby who had to be induced (emergency c-section in the end) and a baby at 35 weeks.

[ICLori]

Wow! I never would have imagined there would be another one of "us" here on the boards, we are supposed to be really rare, LOL! :)

Were the doctors scared with you during your pregnancies? The docs always told me it was best for me to avoid pregnancy because they were not sure what would happen, if I could carry to term. And that was just fine with me anyhow, because even from the time I was four years old I knew I never wanted to have a baby.

That's terrible about the miscarriage - that's part of why I plan on using two forms of birth control instead of just one, because I don't ever want to go through that and this drug would do that to me if I ever did become pregnant. I've heard it's an awful thing for women to go through.

I guess the C-section thing is more common in women like us, because of the high risks etc. 35 weeks...that means the baby was premature? I hope everything turned out okay. Yeah, for sure women like us with mullerian tube defects have higher risks. But it's possible to carry a child to term, just the same.

Blessings,
Lori

[vm]

"They" didn't know until after my miscarriage (1st pregnancy) that I had a bicornuate uterus. Since I had miscarried early on, when I spotted in the NEXT pregnancy very early, my OB ordered an ultrasound. {I had had one after I miscarried in the ER - but a bicornuate uterus isn't always easily detectable. It doesn't affect the vagina and doesn't create two separate uterii - it just has a partial septum down the center.)

Anyway, 2nd pregnancy I went in early for an ultrasound and the tech and radiologist happened to notice it and said, "Did you know you have a bicornuate uterus?" I, of course, had no clue!!!

Soooo, my OB explained the risks of that - miscarriage early, yes, but more risk of late term miscarriage and premature labor. Sooooo, anytime I bled it was into bed and then I spent the last 3 months of that pregnancy on complete bedrest. My OB felt sure that this would be a "little" baby b/c my uterus would be more cramped than another woman's. Well, at 40 weeks they finally had to induce this baby who we thought sure would come early. LOL Then he wound up weighing 9lbs. 5 oz. Not so little! :lmao:

He presented face first, which my doc thought was due to the uterine defect. The heart rate started to drop with contractions so they did an emergency c-section.

3rd pregnancy we didn't do bedrest, but kept a close eye on things. My placenta detached at 35 weeks so I was rushed to the hospital for another emergency c-section. The placental detachment was completely unrelated to the uterine defect, though.

And he was fine! 6lbs. 8 oz. - so would have been a big guy had he gone to term. He had a little blow by oxygen, but only for a little bit. I had him in the nursery that night (brought to me just for feedings) b/c I was worried. But then he was fine and roomed in with me for the rest of the time. :)

[diane57]

Massagedoula, I'm curious. If the only "horror stories" about this drug are from doctors putting parts of a tablet into the vaginas of full-term pregnant women, that's a totally different thing from someone taking a tablet orally to help with IC. Have you heard other horror stories about people taking it orally? I know you're very cautious about taking any drug, as am I. But If there's something that's 75% effective, and the only side effect is possible nausea, it seems to me like it's a relatively mild drug, and I would definitely try it. Is it true you'd never try it even as a non-pregnant person who was going to be taking the table orally?

[ICLori]

You know, Diane, that's what my line of thinking was - I figured, hey, as long as I'm taking this orally, making very sure not to become pregnant, I don't see what dangers there are....?

Blessings, Lori

[sweetangel2080]

wow ICLori- that is fascinating about your two uterii!
How long have you been on cytotek(sp) ?

[massagedoula]

In my line of thinking (this is JUST me. I have NO scientific evidence behind this whatsoever.) I still PERSONALLY would not take it, because of the "unknown" of long-term effects of a drug that is 1.) so powerful and 2.) not highly studied for IC/long term use. The reason? I am very very wary and cautious around allopathic medicine as I am sure that many of you know by now. It took me 9 months to finally start taking Elmiron, and that is currently my only allopathic med, though I use many natural ones too. During those 9 months I battled in my mind with the pros and cons. I researched all the time about Pentosan polysulfate. I called Ortho Mc-neil, I spoke to many doctors, traditional and allopathic. Finally I decided to take it.

Now, fast forward to now. I am a midwifery student and take the health of mothers and babies very seriously. I know that the dangers of cytotec are just from the off-label use of a labor induction tool. However, it has killed many babies and a few mothers (which is highly upsetting to me and the rest of the miwifery community.) If it was Elmiron that was used in place, I would not be taking it either. I need to have a large safety profile of a drug and have it studied well for long-term use before I even consider it. (I am talking safety here---not effectiveness...I know the 38% stat on pentosan.) I know that Elmiron (I keep comparing it to Elmiron because this is what I am taking so it is a reference point.) has a risk of elevated liver enzymes. So I got a baseline hepatic function panel before I started taking it. I go every 2 months to get my blood drawn for repeated hepatic function panels and I then compare them with my baseline blood work. If it ever shows a change I will stop taking Elmiron immediately. Yes, I have IC and it greatly impacts my life and I want to feel normal again. But I don't want to hurt my other (non-bladder organs in the process.)

I know that 99% of everyone else with IC does not feel the same way. Many people take multiple drugs (sometimes I read the signatures of the posts and am amazed at how many pills people are taking) and just need to feel better in their bladder. That is respectible because it is the right thing for THEM. For me it is totally not the right thing and so for this and many other reasons, cytotek is not for me until they 1.) Show a safety profile that makes me feel reassured, especially in long-term use. 2.) Have more studies come out about its effectiveness in IC and have it be more widely embraced by medical researchers.

This all said I am soooo happy that it is working for Lori, Norm's wife, and anyone else who is taking it. Just at this time I prefer to personally slog along with what I feel to be safer drugs, even if they are not as effective.

Does this make sense?

[vm]

Lori - I think if I were in your shoes, having tried NUMEROUS alternatives, knowing you will NOT be getting pregnant, I would be staying on it if it worked for me. I figure I'd be looking at:

a) spend the rest of my life hating my life, not being able to do the things I love, in contant pain and discomfort

VS.

b) the possibility that something could go wrong down the line b/c of the drug that has given me my life back, basically

------ I am all for taking that risk.

Undoubtedly. I'd rather risk a complication down the road than face having a very low quality of life. You have exhausted every treatment out there. I know - I've watched you for a long time try and try and research and research. If it was out there to be tried - you did it. If this is working for you and you are on the pill with no plans on earth to get pregnant - go for it. :)

[ICLori]

Thank you, VM, and thank you, Massagedoula, for explaining your reasons for not wanting to try cytotek. I was just worried that there were some side effects that the drug companies weren't telling us about. (I know that happens sometimes!)

Blessings, and thank you all for wishing me continued success,
I hope everyone soon finds their remission/miracle,

Lori

[ICLori]

You know, Massagedoula brings up a really good point about there not being much known about this med long-term. It was only introduced in 1990, so there is no way we can really know how safe it is. I mean, okay, I figure there have been some people on it for fifteen years now, and as far as we know those people are okay (but I fully believe that sometimes drug companies suppress information, I don't fully trust them) but I figure I will probably be on this drug 50 years maybe....who knows. So there is no way for me to know what will happen in the future. All I know is I need help now and this seemed less risky than bladder removal which does carry very significant risks.

I would like to caution people about herbal, natural, homeopathic etc. drugs. They aren't always as safe as you think they are. Just because they are natural doesn't mean you can't develop an allergy to them, overdose on them (for instance docs see patients all the time who overdose on the fat-soluable vitamins), and there have been some studies that suggest that the potency listed on the bottles does not always match the product.

I was taking many natural products for my IC - fish oil capsules, cod liver oil capsules, quercetin, and really too many more to name that I've tried over the years. It turns out that with my particular "brand" of IC, those products were harming me rather than helping me! So please be careful, no matter what medicine you take or procedure you undergo.

Here is what I was able to find on cytotek....it's not really all that informative....and again it's very unsafe for pregnant women of course....

Now natural prostaglandins are found in every tissue of the body. And this is a synthetic version of these prostaglandins. Which doesn't mean it's safe, just letting you know what this stuff is. For instance, there is a lot of debate out now about how hormone replacement isn't good for you, even though it's hormones like what you have in your body, because it's synthetic or animal-derived rather than natural hormones. So this stuff could have the same kind of problem...synthetic versus natural....we just don't know.

Blessings,
Lori

@@@@@@@@@@@@@@@@@@@@
All About Cytotec

Many patients are not as well-informed about prescription medications as they ought to be. We believe that the more you know about your medications, the better. Therefore, we have written this leaflet to explain more about Cytotec and to explain the importance of taking it properly.

If any of this information causes you concern or if you want additional information about your medicine and its use, please check with your doctor or pharmacist.

Remember to keep all prescription drugs beyond the sight and reach of children when not in use. Store all drugs in their original labeled containers; the place of storage should be cool, dry, and away from light. Always read the label before each use.

What is Cytotec?

Introduced in 1990, Cytotec, or misoprostol (my-sew-prost-ul), is a unique synthetic compound primarily used to prevent stomach ulcers due to aspirin and other prescription anti-inflammatory drugs. Cytotec is under protected patent and not yet available in generic form. It is available in both 100 and 200 mg. tablets.

Cytotec is non-narcotic and is not habit-forming. It does not cause sexual dysfunction. It is not an antacid. It has not been found useful in prevention or treatment of duodenal ulcers.

How does Cytotec work?

Your stomach has a protective mucous layer that allows food to be digested by strong digestive juices. Without this protective layer, these digestive juices could damage your stomach. Arthritis medicines can be very helpful in decreasing pain and swelling in your joints. But like every medication, they can also cause unwanted side effects. Certain arthritis drugs, also known as NSAIDs (nonsteroidal anti-inflammatory drugs), can damage your stomach's protective mucous layer. If this protective layer becomes weakened, stomach ulcers could occur. In some cases, this could result in serious complications such as bleeding, hospitalization, and surgery.

Prostaglandins are natural substances found in many parts of the body. They help control the amount of acid in your stomach as well as the thickness of the protective mucous lining of the stomach. Arthritis medications can decrease the amount of prostaglandins in the lining of your stomach. If there is not enough prostaglandin in your stomach, your stomach cannot protect itself from these acids and you could develop an ulcer.

Cytotec, a man-made prostaglandin, has been proven to help prevent stomach ulcers by increasing the amount of prostaglandin in the stomach. This decreases the amount of acid that the stomach makes and also builds up a thick layer of mucous on the stomach lining.

Who should take Cytotec?

Patients on chronic NSAID therapy should be considered at high risk. Common NSAIDs include aspirin, ibuprofen, Anaprox, Ansaid, Clinoril, Feldene, Indocin, Meclomen, Motrin, Naprosyn, Nalfon, Orudis, Tolectin, and Voltaren. Certain individuals who take NSAID arthritis medicines are at greater risk. These would include patients over the age of 60, those with other medical problems, and individuals with a previous history of ulcer disease.

Taking Cytotec properly


1. Always take Cytotec with food. To help prevent diarrhea from the medication, it is very important that you take each Cytotec tablet with a meal. If you have been prescribed a dose at bedtime, be sure to take it with a snack.

2. Do not stop Cytotec if you develop diarrhea. Diarrhea commonly occurs during the first week of treatment because the body is adjusting to the medication. For most patients the diarrhea goes away on its own within the first week without further problems. Take each dose with food. If you continue to have loose stools and you feel you are losing too much water, call your doctor. Certain magnesium-containing antacids (Di-Gel, Gaviscon, Gelusil, Maalox, Mylanta, WinGel) can worsen the diarrhea and should be avoided. If antacids are needed use AlternaGel, Amphojel, Titralac, Tums, or Rolaids. 3. Take the dose as prescribed. Initially, your doctor will determine the optimal dose for you on the basis of your current dose of NSAIDs, age, weight, any other medical conditions that you may have. Generally, most adults are instructed to take a 200 mg. tablet four times per day.

Do not increase the prescribed dosage on your own. Your doctor will routinely review your case and adjust the dose accordingly. The goal, of course, is to prevent stomach ulcers with the lowest effective dose of Cytotec possible.

4. Do not miss doses. If you do miss a dose of this medicine, skip the missed dose and go back to your regular dosing schedule. Although an occasional extra dose is unlikely to cause harm, you should not intentionally double doses.

5. Do not stop taking Cytotec. In order for Cytotec to protect you from stomach ulcers, you must take it for the full length of time that you are taking the arthritis medicine. This may be for many years.
What are the side effects?

As with all prescription medications, Cytotec can cause side effects. In general, the risk of side effects depends on the dosage of Cytotec. You can help limit side effects by taking the medication exactly as prescribed and promptly reporting any problems to your doctor. Always take it with food. It is important that you keep all your appointments with your doctor so that he can be sure the medication is working and check for possible side effects.

These side effects should be reported to your doctor:
Severe watery diarrhea
Postmenopausal vaginal bleeding
The following side effects typically subside as your body becomes accustomed to the medication. These effects usually do not require medical attention. However, should they persist or become bothersome, simply check with your doctor:
Nausea
Bloating
Abdominal cramps
Persistent Diarrhea
Side effects not listed above may also occur. If you experience any other symptoms while taking this medication, check with your doctor.

Precautions

No foods or beverages are restricted while taking Cytotec.

Do not take Cytotec if you are pregnant or if there is any chance that you could be pregnant. Do not become pregnant while taking Cytotec. If a woman is pregnant and takes Cytotec, she could have a miscarriage or dangerous bleeding. This could result in hospitalization, surgery, infertility, or death. If you feel you have become pregnant while taking Cytotec, discontinue the medication and call your doctor immediately. In general, women of child-bearing age should not take Cytotec.

Cytotec should not be used when breast-feeding since it could cause significant diarrhea in a nursing infant. Cytotec is not recommended for children.

Never share Cytotec with anyone. Cytotec has been prescribed for your specific condition. It may not be correct treatment for another person, and may be dangerous to another person if she should become pregnant.

Remember

Your doctor believes that you are in a group of patients at high risk for developing an ulcer from your arthritis medication. By taking Cytotec you are helping to protect your stomach from ulcers. Cytotec decreases the amount of acid your stomach produces and helps to strengthen the barrier of protective mucous in your stomach. As with all medications, however, side effects may occur. You can best limit problems by taking Cytotec exactly as prescribed. If you have any questions or concerns, do not hesitate to discuss them with your doctor.

[massagedoula]

Lori, Very informative brief about cytotek. You know, Elmiron has only been around since about 1990 too, so actually they both really are probably similar in the fact that no-one knows what decades of taking them will bring. Though Elmiron must be more studied?? Don't know that for sure either. I personally don't plan to take Elmiron for more than 1.5-2 years (cause then I will start trying to get pregnant) but this all need more research before I go off in another tangent about safe and non-safe drugs.

Happy New Year!

[diane57]

Massagedoula, thanks for clarifying that for me! Yes, it absolutely does make sense. Bottom line is, we are all so different in our symptoms and how we feel about various treatments, the crucial thing is that we all just follow our own path. The great thing about the ICN is we can share with each other what works or doesn't work for us!

I really hope they do a study of Cytotek - if it really helps 75% of patients that would be a miracle such as we have all been hoping for! And the "official" study would hopefully give a fuller report of possible side effects. As for me, if I were in a lot of pain, I would risk it immediately...

[ICLori]

You know, I was thinking, even though some drugs have been around a pretty long time, they are still just now finding out things about them - like that the NSAIDS can cause intestinal bleeding as well as stomach ulcers - so even when a drug is well studied and thought to be pretty safe, they are always finding out new things. Being somewhat cautious about taking drugs is probably a very good idea.

It's just that in my case, I was in such horrific misery, that I was willing to try anything. I was at the point where my doctors and I felt that bladder removal was actually a viable option. And that surgery does carry some really substantial risks, at least as I understand it, and risks for life afterwards too, like maybe losing my kidneys to repeated infections. So as far as I'm able to figure out at this point, taking Cytotek seems less risky (as long as I avoid pregnancy) than bladder removal.

Sometimes with really horrible diseases like this, we have to make choices we wish we didn't have to make.

Blessings,
Lori

[massagedoula]

I hope that Lori's doctor will use her as a "patient case study" and publish it in some medical journals.

Then maybe other uros and medical researchers will take notice and start studying Cytotec for use in IC. If I was choosing between removal and Cytotec I would surely try anything before getting my organ removed from my body, so I totally feel the same as you all. I am very young in my IC and still have barely tried any IC meds, just Elmiron and Atarax (which I didn't like) so I have not gotten to the trial and error stage that many of you have.

[ICLori]

I hope and pray so much that you will never get to the point where you have to try dangerous drugs (I don't think Elmiron is dangerous, at least not from what I've read) or anything.

I know docs always tell me I'm the worst or one of the worst IC cases they have ever seen - everyone else as bad as this always ends up with bladder removal. So my case is maybe like one in a thousand or something, I don't know. So hopefully hardly anyone will have to make the decisions I've had to make.

There's good reason to be hopeful, I think - there is so much more money going into research on this disease, really this is the first time that it's been studied the way it should be, and I think that we have already seen some breakthrough news (like about the APF) and I truly do believe we will see good remedies or maybe even a cure come out of all this research now. Maybe ten years from now, it will be a matter of having a medicine that goes to the root of the problem and corrects it with hopefully no or few side effects.

Blessings,
Lori

[dawnmarieR]

I Am Happy To Hear That You Are Feeling Better. How Do We Get There? What Is Cyotek? My Feelings Never Go Away.

[ICLori]

Hi, Dawnmarie, thanks! Cytotek is a synthetic prostaglandin used to help treat and prevent stomach ulcers. One very small study showed that it may have promise for treating severe IC that hasn't responded to other therapies. The problem is, it generally is never prescribed to women of child-bearing age because it can cause abortion/miscarriage and bleeding for the mother. Very dangerous if you become pregnant. I am going to ask the doc if I can have a tubal ligation so that I don't have to worry so much. I am on the pill and older so not very fertile anymore but I still worry. So you can see this medicine won't be for everyone.

But here's a link to a thread I started on it where you can see an abstract of the study and learn a bit more...

http://www.ic-network.com/forum/showthread.php?t=22878&page=1&pp=15

Hope this helps some, hope you feel better soon and find your miracle.

Blessings,
Lori

[SusieQ045]

i think that is one of hardest parts of IC. you fell like you arent in control anymore. you ar willing to do things that you wouldnt have done before you had IC (having surgery,taking mediactions,making life changing decisiojns.) just dont let IC get the best of you. and make sure that you do think about your de3cisions very carefully beofre you make them. (not saying that you dont). but i know that i have made some decisions that iwish i would of thought about more before i made them. good luck...i hope you get feeling better

[dawndawn]

Congratulations for being in remission and for those that posted a reply I pray that you too will go into remission or pray that the pain will be minimal.

[purpleviolet]

This is interesting to me. There is a product called Nature's Lining that is made from zinc-l-carnosine that is supposed to build up the lining of the stomach. I just sent the makers of this stuff - Lane Labs, a question if it could possibly help the mucus lining in the bladder. PeeVee

[chernobyl]

I'm a little confused about the whole prostoglandin thing. Isn't that what causes period pain (I get shocking cramps)? If you took a medication which increases prostoglandins wouldn't it also make period pain unbearable?

Also, does anyone else find that anti-inflammatories such as aspirin, naproxen etc make the whole bladder pain and urgency worse? I tried them on advice from my doctor and found it just made everything worse so I stopped. :hmm:

[diane57]

Oh Chernobyl that's very interesting. Because every month the only time I can be SURE my IC won't bother me is when I'm having my period - I get ovulation flares and PMS flares, and I wait and wait for my period because then I have no symptoms. Maybe because of the prostaglandins that are released when you have your period? I agree though, for those who get cramps (I'm lucky that I don't), Cytotek would probably make the cramps worse. It often seems that with IC we have to pick the lesser of two evils...

[ICLori]

Hi, PurpleViolet, that is very interesting, I would think that any product that does that for the stomach, would do that also for the other visceral organs with linings because it's all the same type of tissue. I think that's why misoprostol works on some IC bladders, because the lining/tissue is so similar to the stomach. Please let us know, if you try it, if it helps! I am hoping it will help because that might be a wonderful alternative to misoprostol for those who do not wish to take it or can't because they are trying to become pregnant.

Another product I found (because I am curious about this whole mucuous thing and lining building thing) is called mastic gum. I guess it's actually a food product, used in some desserts or something. Anyway you might want to google that one and see what you think of it...wonder if anyone here has tried it?

Chernobyl, I found that all those NSAIDs and even Tylenol which is a different category, all made me worse bladder-wise. Sometimes with the first dose I would think it would help, but by the second dose it was clearly making me worse.

Supposedly there are two different types of prostaglandins. One is a COX-1 I think they call it, and that's a "good" prostaglandin that does repair work in the body and helps maintain/build linings of the visceral organs. The other is COX-2 which is the "bad" prostaglandin which causes inflammation and pain. That is the prostaglandin that the prescription meds like Celebrex, Vioxx etc. try to combat while still leaving the COX -1 prostaglandins in place so you won't get stomach ulcers etc.

NSAIDS all combat both COX-1 and COX-2 prostaglandins. So they work as pain relievers but you pay a price in terms of the stomach lining, intestinal lining, and (maybe?) bladder lining.

I don't really know which type of prostaglandin misoprostol falls under. So I'm just sort of assuming my cramps will be awful this period, more awful than usual I mean. I will let you guys know when I do get my period. I am trying to only have 4 periods per year though (although sometimes my body rebels and gives me more periods) so it may be awhile before I'm able to report back on that.

Blessings,
Lori

[purpleviolet]

Yes I'd like to try the Natures Lining, but right now I'm trying Bladder-Q. I don't feel too bad at the moment, but that doesn't mean it's doing something because my IC takes huge swings on its own it seems. That's the problem. I see a lot of messages where people claim something is helping them, but they are also on Elmiron. How can one tell what is doing what?

[massagedoula]

Hi PV,
For me since I have been on Elmiron I know my new baseline (less symptoms than I used to feel but still IC.) Then sometimes I swing up or down from that baseline and that is how I knowi if something is helping or hurting. I always have symptoms, so it is easy for me to tell, since I don't get spontaneous remissions (yet...but I hope one day).

[purpleviolet]

Yes I read that there are 3 prostaglandins, but #2 is bad if too much of it. This one site (sort of an XX site that popped up on a search for IC and prostaglandins was promoting some weird products and borage oil to up the prostaglandin #1). It was not the normal type of site most of us normally visit. PeeVee

[ICLori]

Thanks for letting us know, purpleviolet! That's very interesting! I'm sure that Cytotek promotes prostaglandin #1 which is the prostaglandin that repairs the linings of various organs including the bladder.

Blessings,
Lori

[Babs RN]

I was induced with Cytotec at 36 weeks(and also received pitocin)because my cervix had not changed at all(no effacement and finger tip dilation)and suffered no ill effects, nor did my daughter. I had severe preeclampsia, gestational diabetes and a clotting disorder so this drug was essential to my and Lindsey's continued health. I was also working in women's health at the time. Just my experience, but was a positive outcome.

Hugs,
Barb :grouphug:

[ICLori]

Thanks for letting us know your positive experience, Barb! I'm sure there must be valid reasons why this medicine has been used for various purposes. Although I'm certainly not doubting the horror stories either.

I haven't been able to find anything really terrible out about cytotek when used on non-pregnant women, so for now I'm going to continue using it since it's helped me so much.

I'm so glad you are back, I really missed seeing your posts! I sure am happy you've had a good holiday, too, and that things are going well for you.

Blessings,
Lori

[sami4]

I can take Bufferin buffered asprin and have UT effects from it.
Arent the Statin drugs cox-2 inhibitors or am I confused? I am talking about the Lovestatins, Previstatins that are used for high cholesterol?
Sammie

[sami4]

Sorry, I meant that buffered asprin does NOT give me UT problems and I can take it just fine for pain.
Sammie

[Cheries]

This is really amazing for you Lori! I am in the same position as you, in fact my doctor today (new gyn)asked why my urologist hadn't considered taking out my bladder. I told him because I think that there is still something out there that can help me and will help me. I am going to ask him about this. Are you also sensitive to medications? I get bad bladder reactions to stuff that puts me into spasms. It seems like you are tolerating the medicine well. Do you also have vulvodynia problems or not? Thanks! I am going to look up more info on the cystotek

[ICLori]

Hi, Cheries! I usually react badly to nearly all medicines. For example, Elavil, Atarax and Elmiron (and all pain meds) all made my bladder more irritated instead of helping.

I don't know if I have vulvodynia exactly but the doctors when they do an exam on me always note that there is a lot of redness to the tissues down there.

I was down to pretty much the last two medications (experimental) to try before bladder removal - cytotek (misoprostol) and cyclosporin-A. If you do searches on those you will find the old posts and studies and you'll see why I was considering both of those for IC. Although only very small studies have been done on those two meds, they both showed a higher efficacy rate than what is currently used (DMSO, Elavil, Atarax or Elmiron) - but they are both also more risky (especially the Cyclosporin) so that may be why more doctors aren't using these therapies. But still there ARE some doctors out there using, for example, Cyclosporin, for IC, so it's not totally unheard of although it is not common.

I wish you the best of luck with whatever you try and hope you will have a remission.

Blessings,
Lori

[massagedoula]

At my last uro appt. I found out that my uro is part of a test group that is testing cyclosporin on IC. Not for me, but for end-stage patients. I also found out that she does bladder removals! How strange, I thought she was a pretty basic uro, guess she is just being conservative with me....She knew nothing about Cytotec. (I asked for you Lori...she never heard of it being used for IC.)

[ICLori]

Hi, Massagedoula, it would make sense for a uro to be as conservative as possible. Since your symptoms are completely controlled by diet and Elmiron, it wouldn't make any sense to do the riskier things on you (like Cyclosporon A use or bladder removal) when the less risky things are working just fine on you.

That's really cool that she is doing the trials with Cyclosporon A! I am so glad to hear that some docs are doing that now! I have read the initial studies and they were very positive, even more positive than the study on misoprostol and IC. My doc and I just chose misoprostol to try first before the Cyclosporon A because the Cyclosporon is an immunosuppressant drug with all the typical side effects of immunosuppressive drugs - increased risk of infections, cancer, etc. Compared to Cyclosporin, Misoprostol is a fairly innocuous drug (if pregnancy is avoided.)

Thanks for asking for me - it doesn't surprise me at all that she's never heard of this being used - when I gave the study abstract to my urogyn, he had never even read the article nor heard of it. Even though it was published in a peer-reviewed journal and certainly was valid research (only valid stuff gets published in the peer-reviewed journals such as the Journal of Urology, etc.)

Of course since it WAS published in a peer-reviewed journal, my urogyn took the study seriously and decided that although it was a very small study, it was worth it to try me on the medication, given that the study results were so positive and my having failed all other conventional treatments. I am so grateful he did decide to let me try this!

Here is the study abstract if you would like to print it out to show your uro. Of course, you would never personally take this drug, I understand, but the study might still be of interest to your uro and perhaps you would like to print it out for that reason.

I understand there are other studies on this and IC but I wasn't able to access them with the link ICNJill so kindly provided as my computer is messed up. If you are better with computers than I am (I am sure you are!) then you'll be easily able to pull up the other studies.

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Clinical Response to an Oral Prostaglandin Analogue in Patients with Interstitial Cystitis
J.D. Kelly, M.R.A. Young, S.R. Johnston, P.F. Keane
Department of Urology, Belfast City Hospital, Belfast, Northern Ireland
European Urology 1998;34:53-56 (DOI: 10.1159/000019679)

Objective: To assess the efficacy of the oral prostaglandin analogue misoprostol in controlling the symptoms of interstitial cystitis in patients with refractory disease.

Methods: Twenty-five patients were commenced on misoprostol 600 µg daily for 3 months. Patients who responded to therapy were offered treatment for a further 6 months. Assessment of the response was by a voiding log and an interstitial cystitis symptom score.

Results: At 3 months, 14 patients (56%) had significantly improved, and after a further 6 months, 12 patients (48%) had a sustained response. The incidence of adverse drug effects was 64%. Most side effects were minimal, and the response rate in patients who were able to tolerate the drug was 87% at 3 months and 75% at 9 months.

Conclusions: The oral prostaglandin analogue misoprostol is effective in treating the symptoms of interstitial cystitis. It is possible that prostaglandins have a cytoprotective action in the urinary bladder.

@@@@@@@@@@@@@@@@@@@@@@@@

Blessings, Lori

P.S. 17 days and counting, still in complete remission. Drank a Coke today, drank a big orange juice, ate an orange - no twinges, no pain, no frequency, no urgency, no nothing! Woo hoo!

[massagedoula]

Lori,

I definetely would not say that my symptoms are totally controlled by diet, natural suppliments, and Elmiron, though they are better than they were before with just diet and natural suppliments.

I always ask about all treatments and options, because even though I hope to be getting better and better, who knows what they next years of my life will bring with this battle with my own bladder.

[chernobyl]

Hi Massagedoula

How long were you taking Elmiron before you had any noticeable difference?

[ICLori]

Hi, Massagedoula, I'm sorry to hear that :( I thought that with the Elmiron you were pretty much back to normal. Well, I hope very much that the Elmiron works better the longer you take it and soon you will be in complete remission. I hope you never have to even contemplate any riskier therapies.

Blessings,
Lori

[massagedoula]

I saw a change after being on it at about the 2 month mark. My husband just commented yesterday that he thought that I was so much better. I asked how he thought that, and he said that he does not worry about me anymore. He used to see me always in the bathroom and in pain and cry...not be able to go out with friends and never want to be in the car. Now he does not worry about me living a normal life anymore, though he could do with more sex...lol.

These days I can do pretty much anything except be in the cold without a heating pad, heavy lifting, and sex/anything touching my suprapubic area. I still urinate alot, and have the urgency and sometimes burning. But the pain (except in flares) is pretty much gone and the burning intermittent. I need to work on the urgency and frequency.

So, yes, a sure improvement, but by no means a remission.

[ICLori]

It sounds like you are so much better than before though - maybe in another few months you won't have as much urgency/frequency etc. as before, maybe it will just take a little longer for the Elmiron to be 100% effective.

Blessings,
Lori

[Markiepalot]

hi iclori,
looking for more infor on cytotek- Is it something a man can take. I don't plan on having kids. lol! But i want/need something to save my wonderful life. First time i have heard of this drug anything you have for me would be helpful.

[ICLori]

Hi, Mark, welcome. It's a drug that is commonly used to treat/prevent stomach ulcers, so it is used in patients of both sexes. It's also used to start labor in women, and naturally for that purpose it's only used on women.

It's a novel treatment for IC (not standard) but if you read one of the previous posts in this thread (I think it's about five or six posts back?) you will see the abstract of the study published in European Urology which I took to my doc to convince him to let me try this. If you do approach a doctor to try this treatment, I strongly recommend you print that out to show him. He will have respect for it because it was published in a peer-reviewed journal. Merely saying "I read that someone got relief from this" won't do it.

Even if you bring in the abstract, don't be surprised if the doc says "no" because it is not the standard treatment. In order to try this, most likely you will have had to try and fail at every other standard IC treatment out there (DMSO, Elavil, Elmiron, Atarax, etc.) And even then a doc might not let you try this because it's just too experimental. There's only been that one study done. Now, the one study does seem promising, but it's only one study, with a very small group. A larger study might completely invalidate the results from this one small study, you never know. But for now it's the only study I am aware of so that's why I keep cutting and pasting it over and over again in these posts (it's real easy to find if you look so I won't cut and paste it again here.) It said that 87% of IC'ers who could tolerate the drug (that's a biggie - causes intestinal cramps etc. during the first couple of weeks as your body adjusts so some IC'ers dropped out of the study) got better on it. That's a pretty hopeful statistic. I do hope that another researcher does a larger study on this so we can determine whether or not this drug really could work for IC'ers.

If you do a search on "prostaglandins" it will pull up pretty much every old post on misoprostol/cytotec. You might like to read those old posts, they are quite informative.

I am not an expert on this drug, at all. I'm just someone who read the other old posts about it, saw the abstract, and took it in to the doc to ask if I could try it. And since then I've been in remission which I'm glad for. So that's about all I know about Cytotec.

Blessings,
Lori

[Kate82]

Lori, from reading this thread I gathered that its not a good idea to use NSAIDS b/c of damge to the stomache lining (I already knew that but it's good to be reminded) and to even be cautious of natural supliments (which I didn't really think about but glad you mentioned that). I have a very acidy feeling tummy and very bloated, and I get gas, constipation, and diareah...and I do think theres a connection with my stomache being yucky and my urethral syndrome. So I want to be very careful with any med or suppliment I try. Well have you heard anything about glucosamine? It is used for inflamation and it sure feels like the burning could be from inflamation. I am curious to know your opinion on it.

http://www.glucosamine-arthritis.org/

Congrats on your remision! :woohoo: That gives us all hope!

Kate

[ICLori]

Hi, Kate, I did read this blurb (below) about NSAIDS and I thought - wow, I wonder which NSAIDS cause this? Could it have been the NSAIDS I used for decades on end? I don't know but I wonder. And it says persistent - not sure what that means exactly - does that mean it continues even after you go off all NSAIDS? If so, for how long? I have a friend with Lupus, she had to take NSAIDS for well over a decade. She says now her esophagus is so torn up from the NSAIDS that she can't take any more, forever. Apparently the damage is permanent. I have to wonder if I did something like that to my bladder by taking Motrin (prescription doses, not the OTC doses) 24/7 for decades.

@@@@@@@@@@@@@@@@@@@@@
Genitourinary Tract: Some NSAIDs are known to cause persistent urinary symptoms (bladder pain, dysuria, urinary frequency) hematuria or cystitis. The onset of these symptoms may occur at any time after the initiation of therapy with an NSAID. Some cases have become severe on continued treatment.
@@@@@@@@@@@@@@@@@@@@@@@@

As far as I know, I haven't heard of glucosamine being an anti-prostaglandin. I think it's main action is to rebuild cartilage and soft tissues like the lining of the bladder. Some people who can't take Elmiron or who prefer not to, find glucosamine helps them in the same way Elmiron does. I don't know what percentage of IC'ers get better using glucosamine, or how much better they get, but I know I have read some stories of people who got better.

A pharmacist probably would know about glucosamine - they know so much about prescription drugs, of course, but I think they also know alot about herbal or natural drugs as well.

Blessings and good luck,
Lori

[Kate82]

Yea I wouldn't be suprised if the NSAIDS could be atleast somewhat to blame for your IC. Isn't it great what no one warns us about what some meds can do to our bodies. I took Accutane 4 yrs ago and I think it was toxic to my body and did some damage. Anyways I asked my pharmacist today if he knew a/b glucosamine helping with IC or IC symptoms (paticularly burning) he said all he knew is that people take it for cartilege repair and arthiritis. Oh well..I guess he is out of the loop. I will probably still try it but I think I have a few other things I want to try first. And I'm still waiting to hear if it's helped some people on this board. Thank you for your reply Lori and I wish you the best!
Kate

[ICLori]

Thanks, Kate, I hope you find your miracle soon too! Don't give up - sometimes it takes trying a few things before you find something that really works well for you.

Blessings,
Lori

[ICLori]

Kate, I found this snippet on the ICA that might be helpful to you...

Blessings,
Lori
@@@@@@@@@@@@@@@@@@@@@@@@@@
For those patients who cannot tolerate or afford Elmiron®, alternatives to restoring the defective GAG layer might include intravesical heparin and hyaluronic acid (Cystistat®) which will be discussed under intravesical therapies. An oral over-the-counter substitute for Elmiron® might include Glucosamine and Chondroitin Sulfate in a dose of 1000-1500mg daily. Although the latter is not a proven therapy, it in theory should help restore with time the mucin or GAG layer. Glucosamine and chondroitin sulfate is a supplement commonly used by arthritis sufferers to restore cartilage (mucin) in degenerative joint disease.
@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@

[kimmichele]

Hi
I just found this board as I am having a little flare up and had given up on drugs. I wonder if there are herbs that also produce protaglandins? I tried elmoron when it was experimental to help build the lining but all it did was make my hair fall out. But this drug sounds very interesting. We will never get well until the mucous lining is restored.

Kim

[ICLori]

Kimmichele, welcome! I'm sorry Elmiron didn't work for you. It didn't work for me either. You might want to list that as one of the meds you tried and failed, because otherwise most people here will tell you that you should try it. If you let them know up front you already tried it and it didn't work for you, that will nip that in the bud.

I hope that you are able to find the meds or combination of meds and herbal treatments that can help you. Like you, I failed pretty much every treatment (Bion helped some, but not enough - experimental neurostimulator) until I convinced my doc to let me try misoprostol after showing him the study done in Europe on it with IC patients. I was lucky - the doctor did prescribe it for me.

I have read that the Omega-6 oils are good for encouraging the type of prostaglandins I am hoping to encourage, so I am currently taking Evening Primrose capsules (one capsule 3 times per day with meals) in order to help the misoprostol work better. It probably would work just fine on its own at this point but I don't want to chance it. I figure the two hand-in-hand will get my prostaglandins pumping nicely and get that nice mucuous going.

Blessings,
Lori

[Kate82]

Kim~ Just wanted to tell you that I had the hair thinning side effect when I took accutane (a drug for acne). Thats the main reason I will probably never try Elmiron!

Lori great info thanks!

Kate

[kimmichele]

Well I've had IC for 25 years and it will take some time to compile a list of everything I have tried. Reading these posts reminds me.

Here's what I remember so far:
DMSO, DMSO with herparin,macrodantin,hydroxizine,benedrile,neurontin,clonapin,flagyl,a bunch of other antibiotics,urised,bellagal,elmiron,elaville,prozac,diflucan,distentio n,accupuncture(pretty effective). Low Carb/no trigger food Diet (effective but bad for overall health)That's all I can remember right now. I'll keep thinking about it.

[kimmichele]

Lori,
I would like to know how much cytotek you are taking daily. I just ordered cystoprotek (natural substance studied by Theroarirdes and Sant). I don't know whether to give that a shot alone or to try them both.
Kim

[ICLori]

Hi, Kim, Cytotec (I had been misspelling it before) is actually very different from Cystoprotek even though they kind of sound/look the same. Cytotec is a prescription drug (misoprostol) and I should probably just use the name Misoprostol when I'm talking about it to avoid confusion. They look too much alike!

My doctor prescribed me 3 200mg tablets per day (to be taken with meals) and that's what I'm taking. Still in remission, this seems to be my miracle drug.

You may have a hard time finding a doctor willing to prescribe this as it can cause miscarriage in pregnant women. So generally most doctors will never prescribe this to a woman of child-bearing age. I just got lucky. Plus I'm on the pill, 44, and using a backup birth control method. Those factors helped convince my doc that maybe it was safe for me to try (not much chance of me getting pregnant, with all of that.)

Good luck with whichever remedies or meds you try! I hope you go into remission soon!

Blessings,
Lori
P.S. I like to try one thing at a time because if you try more than one, it's harder to tell exactly what is helping or what is hurting...it becomes more confusing...
P.P.S. Boy you sound like me, you've tried everything under the sun and all of it failed you so far! :( If it weren't for the Cytotec, I'd still be miserable. I feel very lucky to have been able to get it.

[ICLori]

Just an update - tomorrow will be one month since I started cytotec (misoprostol) and I'm still in remission, woo hoo!

Hope everyone else goes into remission soon too!

Blessings,
Lori

[Cheries]

I am so thrilled for you Lori that you are still in remission. I know you have really been through it. I am still in a big flare right now, not sure if I have an infection or what. I made an apppointment in Feb to talk to my doctor about what you are taking to see if she'll give it to me. I am going to print out stuff about it. All she wants to do is put in an interstim, but I don't feel comfortable with that. I don't have urgency, really more pain and pelvic floor trouble. (Of course, who wouldnt have pelvic floor problems after so many years of pain??) I have one question for you, do you think that the medication would make my fibroids worse etc? Also, are you on any hormone treatments? I am on estrogen. Thanks and I am so glad you are still feeling good. I feel like any day that I have without pain is a gift from God.

[marsi4]

Cherie I'm so sorry you're in a flare. The Interstim as you said is not for pain, don't uro's know that yet. They're inserting these devices and don't know what they are for? If you don't have an infection maybe you should consider going to a pain clinic to help treat some of your pain.

Marsi4

[ICLori]

Cheries, I am taking birth control pills (have been on them continuously since age 18.)

This medicine shouldn't affect your fibroids at all, but of course a doctor could answer that question better. Since it's not anything hormonal, I don't see why it would affect fibroids. It's not like it's estrogen/progesterone or anything like that, it's just an ulcer medicine basically. Just like TUMS wouldn't affect your fibroids, this shouldn't either.

Doctors really want to do those Interstims, I'll tell you, and they will all say they are for pain when they are not. I have no idea why these docs are so ignorant, but they are. Maybe someday it will get better. If your doc won't listen to you about treatment, it might be best to find another doc...there are good ones out there, they are just hard to find....

Wishing you the best,
Blessings,
Lori

[Dean76]

Does anyone know which NAIDS only inhibit Cox-2 prostaglandins. I definitly dont wanna be taking a pain killer to alieviate pain but at the same time could possibly be causing my bladder harm. I am currently taking Ultracet and Ultram

[ICLori]

I know all the OTC NSAIDS inhibit COX-1 as well as COX-2. The prescription pain relievers like Celebrex and Vioxx and all of those were developed to inhibit COX-2 and not COX-1 but I don't even know if you can get those anymore, they were showing heart problems with those for some reason. So some of them have been pulled from the market.

I don't know where Ultracet and Ultram fall to be honest.

Also, NSAIDS may not hurt all IC bladders. Or every bladder in general. You could be just fine taking NSAIDs. Norm (the guy who posted about this stuff first) had a theory that NSAIDs use might contribute to some (but not all) cases of IC but it's just a theory, we don't know if that's true or not.

I think that what happened with me (and I'm not even sure about this, just a guess I have) is that some genetic susceptibility combined with literally decades of around the clock prescription NSAIDS use (very high doses of ibuprofen) might have led me to have some damage to the lining of my bladder.

But maybe not. Maybe it's a hidden infection that stopped my mucuous pumps from working right. Or an autoimmune response. And maybe this drug is artificially making my mucuous pumps work in spite of whatever disease process I have going on. All I know is my bladder seems a lot happier with the mucuous pumps going full-blast.

I have a friend with lupus who can't take any NSAIDS anymore because the lining of her esophogas or something is all tore up from years of those meds. I have no idea why it doesn't happen to every lupus patient, or why it happened to her, but she says doctors told her never ever to take NSAIDs again because the damage is permanent and NSAIDs will make it worse each time she takes them.

That's part of what got me thinking that maybe my bladder problems and the NSAIDs I used so many of for so long might have had a connection. But I truly don't know at all for certain, I'm just guessing.

I wouldn't stop taking NSAIDs unless you have a good reason to think they are the cause of your bladder symptoms.

Blessings,
Lori

[tag0129]

I need some reassurance! Please! I was diagnosed with IC in December and had symptoms full blown on from October and still do. I am a 23 year old female and never have had any problems before. What is wierd is that my symptoms just really are the sensation to pee, I don't actually have to go, and now I am starting to get pain in my bladder.

I am seeing a urologist who specializes in bladder problems and is very familar with IC. I am on Elmiron and have only been on for 2 months, urocrit, prelief, they also just put me on lyrica which they say helps with neurological pain and zoloft.

Last week, they tried a cocktail instil and that night I ended up going to the ER and they put me in the hosptial b/c of my bladder spasms. I am just praying that I will one day get better.

All I do is cry. I met the guy of my dreams and we have almost been together for a year and I am just hoping he will stay around.

I just have not had a break at all! I haven't had one minute where I feel comfortable. I don't know if I can hold on any more.

I just started trying an acupuncture too!

If anyone wants to write back, I would be really greatful.

You can email me too at jfl29tag@temple.edu

[vm]

HI, sweetie. :kissing: It's overwhelming, isn't it? I've taken your post and started a new thread for you on the board titled "Newly Diagnosed?" That way even more people will see your post --- in addition to people who might reply here. :)

[tag0129]

Thanks kim!

[ICLori]

Hi, Tag - you've already gone through the worst of it (the part before diagnosis where you don't know what is wrong.)

It does take time for Elmiron to kick in and work, and I understand how uncomfortable you are now - maybe you could ask your uro for a referral to a pain management center to have your pain treated while you are waiting for the Elmiron to kick in.

Don't worry, I'm sure that within a few months you will be feeling like your old self again and everything will be okay!

Blessings,
Lori

[kimmichele]

I never had a pain killer work very well. They don't give the real pain killing stuff for chronic pain as it is addictive. I do best with something to help me sleep that calms the nerves like clonipin or even lunestra.
Kim

[ICLori]

I've also heard some people say that valium really helps them sleep at night and helps them with the bladder symptoms. I haven't had it prescribed to me, so haven't been able to try it, but I did hear from others who tried it that it really helped them, and sometimes doctors might prescribe that sooner than they'd prescribe a narcotic, possibly.

Blessings,
Lori

[Celeste1737]

Hello ICLori,

I've been following your progress on misprostol now for a few weeks. I hope you will continue to keep us informed. Personally, it gives me so much hope.

My question for you is the following: How long is your doctor planning to keep you on Cytotek? Norm's wife was on it for 9 months. Could you please tell me the dosage? Is it 200mg 3 times a day?

Thank you and congratulations for your remission.

[ICLori]

Hi, Celeste! Thank you!

Actually, Norm's wife was on it for 9 months before achieving total remission....but she did not go off it at that point. She continued to take the medicine, and for at least three years while taking the medicine she has been in remission. She may have adjusted the doseage downward at some point - don't know the doseage - Norm said that he titrated the doseage according to her symptoms and the side effects.

There is NO cure for IC currently. Only treatments that can make a person more comfortable. As long as you keep taking the treatments that help you, you are fine. When you stop taking them, the symptoms come back.

My doctor is planning on keeping me on Cytotec the rest of my life, or until a cure is discovered for IC. There's not really any reason for me to go off Cytotec. It's not a dangerous drug so long as I do not become pregnant. And at nearly 45 years of age, on birth control pills and fast approaching menopause, that's not likely to happen.

I am currently taking 200mg 3 times per day, as in the study that was done in Ireland on IC and misoprostol.

Hope that answers your questions!

Blessings,
Lori

[Butternut]

Going to my Uro this morning to give my case for Cytotec. I have copies of the reports and comments. My esophagus and stomach has been giving me fits for months because of all the Advil and med for burning after urination. Cytotec should help me with both!!!
God, please let this be an answer and please help my doctor to give it a chance. Please help her be open and willing to try and to allow me to try it. Please allow her to have the time for me this morning, to really read the highlights of all the good news. Thanks so much for all who have contributed to this discussion, the studies and ICLori's remission and other's. God please be with those waiting for a miracle, still.

Thanks everyone. I will let you know what happens....

[Celeste1737]

Thanks for the info ICLori. Much appreciated.

I'm seeing my uro on Feb. 8 and I think I will discuss it with him. Good luck Butternut with your uro. Please keep us posted on how it goes.

Celeste

[ICLori]

Best of luck to both of you, keeping my fingers crossed for both of you.

You know, I just thought of something - if traditional IC meds haven't worked for you, maybe you have endometriosis of the bladder instead...because traditional IC meds wouldn't work for that, would they?

Just thinking about this because just got put on Aygestin yesterday because my endometrial implants seem to be growing again and I don't look forward to a third surgery of them scooping out 11 ounces or more of scar tissue/hundreds of little implants...

Hoping the Aygestin (progestin) doesn't irritate my bladder...took one pill, so far, so good...

Blessings,
Lori

[Celeste1737]

Hi Lori,

I've never heard of endometriosis of the bladder. What is it? You really up to speed on alot of things. It's great that you're so willing to share with other ICers.

Celeste

[ICLori]

Hi, Celeste! Thanks! Have you ever heard of endometriosis? Endometriosis can be found nearly everywhere in the bodies of affected women, but you usually hear about it affecting the ovaries, fertility, that sort of thing. But it can and does implant itself in the bowels, bladder, or on top of those organs, causing scarring every month as the endometrium sheds and the blood has nowhere to go.

Endometriosis is basically the endometrium (that stuff that lines your uterus) growing outside of the uterus. They really don't understand why it happens in so many women, but it's becoming an increasingly common problem.

Here's a link about general info on endometriosis. If you google endometriosis/bladder, you will see that endo of the bladder can cause the same symptoms as IC so they may be hard to tell apart.

In fact they do think that I have endometriosis of my bladder in addition to IC, but they feel that the implants are so tiny there is no way to remove them surgically. I tried Depot Lupron and my IC did get better after the initial worsening the first two weeks (it got better once estrogen stopped circulating in my system) so that told them that I probably did have endo of the bladder...but I couldn't stay on the Lupron due to horrible side effects and also because you can only use Lupron for a short time because of bone loss etc. So now they have me trying Aygestin because my other endometrial implants in my upper abdomen are active again (causing me pain) and it's a progestin-only type pill that is often prescribed to manage endometriosis hormonally.

http://www.mindfully.org/Health/Endometriosis-Endocrine-Society.htm
http://www.endofacts.com/understanding/

Blessings,
Lori

[Butternut]

Just returned from Uro. She wants to look over the info sheets that I gave her, check the PDR and then they will phone me if she is going to give a prescription to me or not, in a couple days. She did not sound against Cytotec she just admitted that she didn't know much about it. And she wondered how it differed from Elmiron. If I had not been flustered at the time, I would have said Cytotec has a lot less side effects, such as almost none, for me! Thanks everyone and I will let you know, as soon!

[Celeste1737]

Lori,

Do you think a person has to have endometriosis of the uterus to have it in the bladder? I really doesn't seem like I have in the uterus.

Thanks,

Celeste

[ICLori]

That's wonderful! Happy dance! I'm so glad she is open to looking into new treatments. I love it when uros can think outside of the box with IC and try every therapy out there to help their patients. Of course, they should try all the traditional meds first, but if none of them help, then it's better to try something else rather than leave the patients suffering terribly.

One thing that I hope she insists upon is a pregnancy test for you and perhaps a pelvic exam too just to make extra sure. It is absolutely vital that you not start on this drug if you are pregnant. Not just for the health of the potential baby, but also your health. Only take this drug if you are 100% sure beyond any doubt you are not pregnant! Do not take this drug if your doctor doesn't insist on at least a pregnancy test for you. It is extremely dangerous to take this drug while pregnant.

The way it differs from Elmiron is, Elmiron provides a sort of coating to the bladder, it strengthens the collagen in the lining of the bladder. Cytotec instead encourages the pumps in your bladder lining to make more mucuous - to become a "jucier" bladder so to speak. In fact I often wonder if cytotec in combination with Elmiron wouldn't be a great combination. Kind of shoring up that old lining from two different directions.

The truth is, cytotec can have side effects - some of the people in the studies had to drop out of the studies because they had such bad stomach/bowel distress. The package insert says that generally such symptoms will resolve in one to two weeks, but if you are really miserable, that can be too long to wait. I was lucky in that my body adapted easily to cytotec, but not everyone is so lucky.

Plus, it can be an extremely dangerous drug if a woman is pregnant when she begins taking it.

If you are not pregnant and do not become pregnant while on it, then the risks are not really too bad.

I'm keeping my fingers crossed for you! Hopefully if she does prescribe it, you will be one of the IC'ers that have had positive reactions to it.

Blessings,
Lori

[ICLori]

Hi, Celeste - I'm not sure what you mean by endometriosis of the uterus? I haven't heard of that one. The uterus of all women naturally has endometrial tissue - this is the tissue that babies grow on, and is the tissue that is shed every month when your period comes. If you have ever had a period in your life, you can be 100% sure that your uterus contains endometrium. It is normal and expected for all women to have endometrium in their uterus (that's what the lining of the uterus is called - endometrium or endometrial tissue.) If women did not have this lining of the uterus, then there would be no babies (no lining for the babies to grow on) and no periods.

But when this tissue either escapes from the uterus via retrograde menstruation through the fallopian tubes (one theory about how endometriosis comes about) or the tissue is just there from birth for some reason (genetic mistakes) (another theory about how endometriosis happens) and the tissue implants itself on various organs in the pelvic cavity, and begins to grow and shed every month with the menstrual cycle, that's when the problems start. Because this causes bad scar tissue and inflammation and pain, because the endometrial tissue of the uterus is not designed to live outside of the uterus.

I hope this clears things up a bit! :)

Blessings,
Lori
P.S. Wanted to add, this is some excellent information about how the uterus works, the lining of the uterus and how it works, etc.! I hope it is helpful to you!

The uterus is located in the lower abdomen between the bladder and the rectum. The uterus is also called the womb. It is pear-shaped, and the lower, narrow end of the uterus is the cervix. When a woman is pregnant, the baby grows in the uterus until he or she is born.

On each side of the uterus at the top are the fallopian tubes and ovaries. Together, the uterus, vagina, ovaries, and fallopian tubes make up the reproductive system.

In women who have not gone through menopause ("the change" or "change of life"), the ovaries produce the hormone estrogen at the beginning of the menstrual cycle. Estrogen helps to prepare the lining of the uterus (called the endometrium) for possible pregnancy. When the uterus is ready, one of the ovaries releases an egg. The egg travels down the fallopian tube where it waits for possible fertilization.

If the woman becomes pregnant, the fertilized egg travels to the uterus where it attaches to the endometrium. If she does not, the endometrium and the unfertilized egg are discharged through the vagina during the woman's next period (menstruation).

[icsonja]

Hi Lori, I am wondering about your bion implant and whats up with it? I am supposed to have the trial done in Feb. and I am curiuos as to why you think it didnt help, or did it make you worse? Would you do it again?
I read about the new drugs you are on, are you in a trial with them?
So many questions, sorry, but I have a big decsion in front of me and can usr all input!!!
Sonja :help:

[ICLori]

Hi, Sonja, the Bion helped me tremendously with the frequency (cut it in less than half) but didn't help so much with the pain. I still had pain, especially at night and also around my periods. That may be because I have endometriosis of the bladder (my docs are pretty sure that I do, anyway, based on my response to Lupron and my history of endo elsewhere) and the Bion may not be an effective treatment for endometriosis of the bladder.

I suspect my endometriosis of the bladder has been worsening in the last year (my endometriosis does tend to be very rapidly progressive) because the rest of my endometriosis has also been worsening (I have several implants in my abdomen that I can feel with each period. They are not bad enough yet to go back to surgery for a 3rd endometriosis operation, but they are making themselves felt again, for certain, and seem to be growing.

So anyway my bladder pain had been getting worse and worse, maybe because the endometriosis was getting worse and worse, who knows.

They told me before I ever got the Bion put in that it was NOT effective for pain - that it only treated urgency/frequency. Hopefully your research team has told you the same thing? If not, they are not being ethical...

Blessings,
Lori

P.S. Yes, I would do it again, because it helped with the frequency, which was part of my problem. I was bothered both by frequency and by pain. It got rid of half of the problem (frequency) for me so it was worth it.

These medicines I am taking now (Aygestin for my endometriosis, cytotec for the bladder pain) are not part of any trial that I am aware of. I just went to my urogyn here (not the urogyn who did my Bion, a new one) and he gave me the medicines. He said he has decided to treat me with whatever he deems best in spite of my Bion trial. That he will not let that influence his decision on what my best care is as a patient.

[vickisue]

this is interesting! my left kidney is way up high,where the right one is where it should be.i have heard this usually occurs in females with dual uteruses.(but was not the case with me).

[ICLori]

Oh, that's interesting! I do have dual uterii (didelphys) and all the stuff that goes with it, and I remember a radiologist telling me my bladder and other organs were not where they were expected to be....

[kimmichele]

I am going to my uro on tues for the same thing. She will probably want to look it up herself too. I was on elmiron for 3 months before it was approved. My hair started falling out and I noticed no difference.

I got my cystoproteck three days ago in the mail and have been working up to it. I have added other herbs and supplements too. I took them all last night and went to bed. I had little pain when I went to bed but pain woke me up. I think it may be due to the 2 valerian capsules I took. Valerian has bothered me in the past in the liquid form. I will have to back off everything until i find the culprit.

Kim

[Butternut]

Uro just called with the Cytotec prescription. She wants me to start with two pills per day first, then gradually increase. Oh happy day!!! Thanks everyone! I have had sooo much gastritis and acid reflux. Something has to help. Seems sometimes that when I flare, it is when my whole system is "raw" from the throat down.
Now I sure hope I can tolerate it. Oh, please work for me.....

[ICLori]

Wow, Butternut, that was fast! But please, please be absolutely 100% sure you are not pregnant before beginning to take this medication, just to be safe. I'm shocked that your uro didn't require a pregnancy test beforehand!

I do think that for certain this will help your gastritis. There have been so many studies done on this med and gastritis that show it to be clearly helpful. But the cystitis stuff...only that one study that I know of. But it was a promising study, even though it was small. I sure do hope that it will work for both the cystitis and the gastritis!

I think it's very smart of your uro to start you out on two per day - that way your body can adjust gradually to it - probably less likely to cause bad side effects that way. The package insert I got with mine said to be sure to take it with food (a full meal) so I'll pass that advice along...

Blessings,
Lori

P.S. Kim, hope you have good luck with the herbs, sorry you had the pain in the middle of the night.

[Butternut]

ICLori, do you still feel symptom-free? I took my first Cytotec this morning around 1:00 am while at work and eating a meal. No adverse reactions, so far. I mean't to mention yesterday that I had a total hysterectomy twelve years ago so no worry there. This may be a perfect protection-forming medication not only for the bladder but with the esoph. and stomach. The Advil and analgesic for burning have caused soooo much irritation! I so appreciate you sharing all the info about Cytotec and I would like to hear more about how you are feeling now. Are you still drinking juice and Coke? Are you eating tomatoes? Please tell us more. We will all be celebrating with you!

[ads]

Are there any medical journals with info about this medication?

[ICLori]

Hi, Ads, yes, here is one abstract of a study published in the European Urology journal:

Clinical Response to an Oral Prostaglandin Analogue in Patients with Interstitial Cystitis
J.D. Kelly, M.R.A. Young, S.R. Johnston, P.F. Keane
Department of Urology, Belfast City Hospital, Belfast, Northern Ireland
European Urology 1998;34:53-56 (DOI: 10.1159/000019679)

Objective: To assess the efficacy of the oral prostaglandin analogue misoprostol in controlling the symptoms of interstitial cystitis in patients with refractory disease.

Methods: Twenty-five patients were commenced on misoprostol 600 µg daily for 3 months. Patients who responded to therapy were offered treatment for a further 6 months. Assessment of the response was by a voiding log and an interstitial cystitis symptom score.

Results: At 3 months, 14 patients (56%) had significantly improved, and after a further 6 months, 12 patients (48%) had a sustained response. The incidence of adverse drug effects was 64%. Most side effects were minimal, and the response rate in patients who were able to tolerate the drug was 87% at 3 months and 75% at 9 months.

Conclusions: The oral prostaglandin analogue misoprostol is effective in treating the symptoms of interstitial cystitis. It is possible that prostaglandins have a cytoprotective action in the urinary bladder.

[ICLori]

Hi, Butternut, yes, I am still drinking orange juice, lemonade and coke, and eating foods with tomato sauce, eating bananas, etc. Nothing is off-limits to me at this point, there is no bladder discomfort or other symptoms.

I'm still doing great, that's why I am leaving my "in remission since" signature intact. If I start having symptoms again, I will have to delete that signature!

I hope the misoprostol will work for you, too! In some people, it apparently takes months to really be effective. The one woman who wrote on the boards about it, said she was 70% better after 2 months (her post said she was going off the narcotics she'd been on 24/7.) The other fellow who wrote about it, said his wife took about nine months to be in total remission.

For some reason, it worked quite quickly for me. Not sure why.

Blessings,
Lori

[Butternut]

Had lunch with my parents 80 and 83. Ate Chinese, took second Cytotec. No burning today, so far. Feeling fine. Still no symptoms of diarrhea or other side effects.

[ICLori]

Hi, Butternut, I'm so glad there aren't any bad side effects yet! If I remember what I read, I think the package insert said some patients experience the gastro side effects about one week into taking the pills, then it usually resolves itself within about one to two weeks after it starts up. Again, I was lucky, my body adjusted easily.

That's wonderful that you live near your parents and can enjoy their company! I lost my Mom a few years ago and looking back I wish I had lived closer to her so I could have had more time with her.

Now, does the Chinese normally bother your stomach, or your bladder? If so, does it feel like you've had less burning or other side effects than before? I honestly felt a difference (big difference) the very first day, although when I read the other posts I felt like maybe I was unusual. But I'm very curious to hear from others who try this now to see if they notice a difference fairly quickly or not.

Keeping my fingers crossed that this will help you! I think for sure it will help you with the gastritis, all the studies they've done on that show it helps. And I'm keeping my fingers crossed that the one small study done on IC and this med was accurate - and that it has a good chance of helping you be more comfortable that way too.

Isn't it kind of exciting to be trying a new med, hoping it will work? I was always excited whenever I got to try something new. In my case of course most of the treatments ended up disappointing me, but now everything is good!

Blessings,
Lori

[Vicki]

Hey Lori- I want to thank you for your thread. I find this really interesting because I took Naprosyn for about five years almost daily before i developed IC. I had a lot of back trouble back then. Anyhow, my nurse practitioner is very open minded and gave me a prescription. This is my first day. Did you start out at 200mg 3x/day? She told me to start out at 100mg 2x/day and I could go up to taking it four times a day. Also, she said you can max out at a total of 2400 mg/day. How long did you take it before you noticed a difference? Have you had any side effects?
I had a hysterectomy in September of last year and my bladder had a lot of implants on it. They removed all they could and I had about 6-8 week remission but it's back. I honestly think the remission was from cutting my nerves when they cut me open. I was numb on the outside from the belly button down so it makes sense I would be numb on the inside. Anyhow, let me know how the Auygestin works because I still have an ovary left that had endo on it. They removed all they could off of my bladder and that remaining ovary but there was no way to get all of it. I would be interested to know if you have any side effects from the Auygestin as well. Thanks.
Blessings and Hope, VIcki

[ICLori]

Hi, Vicki, I hope so much both meds work well for you without causing you discomfort from side effects!

Sounds like we both got the double whammy of IC and endo.

I started out at 200mg 3 times per day because that's what the study had as dosing, that I showed my doc. That study was the first he'd ever heard of this med being used for IC, so he just gave me a prescription based on the dosing in the study.

It does make more sense though for you to start out at a lower dose until your body adjusts to it. Probably cuts way back on the side effects I'm thinking!

The first dose I took, I thought I had a bit of slight nausea, which might have been just in my head to be honest. Also I took it on an empty stomach which I found out later is a no-no. Then about a week or so later, I had a few days where I had sort of loose stools. Nowhere near diarrhea, just kind of - you know, looser than usual. No big deal. Then I went back to normal and haven't had any side effects since. I guess I'm really lucky, my body adapted very well to this med for some reason.

It amazed me - I felt a difference starting the very first day. I thought at first maybe it was all in my head, how could a med work so fast? But it must have turned my pumps right on and made my bladder juicy starting from the first day. Anyway it didn't take long from there for me to feel I was in full remission.

I just started on the Aygestin - I think today was my third dose? I'm hoping I won't have bad side effects with it but I read the list of side effects and some don't sound so great. I will try to think positive.

Hard to tell if it's working on my endo or not because I only get twinges during/after my period, about one week per month. The rest of the time my endo is quiet because it's not very bad yet (still hasn't grown all back from the last surgery.)

You know, I'm thinking that the Aygestin might just help you a whole bunch with your endo of the bladder - it's definitely known as an effective treatment for endo - so keeping my fingers crossed that the combo of these two medicines will put you into remission from both diseases!

I always wonder...don't know if anyone knows....can endo on the outside of the bladder (or maybe microscopic bits of it penetrating all the way through to the inside that you can't see with the naked eye) make a bladder look like an IC bladder? In other words, I know that endo of the bladder can have the same symptoms as IC...but can it also look just like IC when you do a hydro/cysto? Just curious....I still don't know if I have IC of the bladder, endo of the bladder, or both. Docs are pretty sure I have endo of the bladder based on how I responded to Lupron and my previous history of really bad endo everywhere else in my pelvic cavity, and I do have a certain diagnosis of IC, but I keep thinking...do I have both? Or one? Or the other? I wonder how doctors can really tell?

Blessings, good luck to you, please let us know, the good bad and indifferent!

Blessings,
Lori

[Vicki]

Lori- I have had a good day so far today so I am hopeful. However, I did do a bladder treatment last night. The doctors have said the inside of my bladder looks good. I have specifically asked them to look the two times I have had a cystoscopy and one time when I had botox. I will definitely keep posting to this thread. I hope this will be the one that changes life for all of us icer's. Blessings and Hope, Vicki

[Vicki]

Lori- Are you still on any other prescription meds other than the Cytotec? Also, what is the evening primrose supposed to do. I have taken it in the past and tolerated it well. -Vicki

p.s. I meant to tell you earlier that my ovary was stuck to my bladder with endo. It's no wonder I flared every month liked clock work.

[ICLori]

Wow, Vicki, that's bad endo! Endo is another terrible disease that they don't understand very well. And it's becoming more common I think, just like IC. I wonder why?

I'm on Aygestin (recently put on it) for combo birth control/management of endometriosis, restasis eye drops for my dry eyes, sulphur cream for my facial rosacea, and the Cytotec for my IC. That's it. No other prescription meds at this time.

I had been on Desogen birth control pills but he told me to stop those and take Aygestin instead, said as long as I take it at the same time each day it should function well as a birth control pill. He also said that at my age, using a second, backup birth control method probably wasn't really necessary - he felt that my fertility was probably quite low by this age anyways, plus with the Aygestin being an effective form of birth control...shouldn't have to worry about pregnancy. His plan is to continue me on the Aygestin until around my 50th birthday and then maybe stop and see if I'm still having periods at that point or not since that's around the time when I might expect to reach menopause. Actually I think the average age of menopause is 51, but I guess it makes sense to stop a year early just to see.

Well, the evening primrose oil - it's one of the dozens of supplements I already had hanging around - I read that the Omega-6 oils in it are kind of the building blocks for prostaglandins. I was thinking, okay, I'm giving my body this Cytotec so it can pump out as many prostaglandins in the bladder as possible, might as well give my pumps the raw materials to make lots of these prostaglandins. I imagine the cytotec would work fine without it - Norm and the other earlier poster didn't say anything about using EPO along with the Cytotec - it was just an idea I had. I probably had enough raw materials in my diet already to make all the prostaglandins my body could ever want, but...since I had the bottle lying around already anyhow - I thought, okay, I'll take these until the bottle is finished. I'm not taking much, just one pill per day. The bottle says to take one or two pills 3 times a day with meals. I didn't want to go all out - just figured I'd give my body a little extra raw material to work with to make the prostaglandins. But actually I guess corn oil and lots of the other vegetable oils we work with, plus some meats etc., have Omega-6 oils in them already. So I'm sure that the average person gets plenty of Omega-6 oils already. Even if they are vegetarian, they probably still use some of the non-olive oil cooking oils sometimes. (Olive oil is Omega-3 oil rather than Omega-6. But olive oil has such a distinctive flavor, that a lot of times people will also keep corn oil, etc. in the house too. I'm guessing french fries fried in olive oil wouldn't taste "right.")

Boy am I keeping my fingers crossed for you! Please don't be disappointed if you don't notice a big difference right away. I remember the one lady poster, from New Orleans I think she was, who said that after two months of taking the Cytotec, she felt she was about 70% better and was thinking of going off the narcotics she'd been on 24/7. So with her, it was about 70% improvement at two months. With Norm's wife, he said it took about nine months for her to be in remission. Then the remission lasted for I think he said 3 1/2 years at the time he posted. I don't know where he is anymore, because I'd love to ask him if his wife is still in remission. I'd like to believe she is. Oh, and he did say she got a lot of gas and bloating with the Cytotec, especially at first. So there definitely are people who get gastro side effects from this. I guess it just depends on the person.

Well, hopefully the Cytotec will make your regular IC much less troublesome, and the Aygestin will make any endo of the bladder you might have, less troublesome, and maybe between the two you will be quite comfortable within a few months.

Blessings,
Lori

[Butternut]

Up and about for the day. No bladder discomfort or burning, so far. Took Cytotek #4 with breakfast.

[ICLori]

Hi, Butternut, that sounds good so far! Do you usually have bladder discomfort or burning, otherwise? I mean, is it unusual for you to have a day without discomfort or burning, or do you have those days most of the time? (Trying to figure out if the Cytotec seems to be making a difference yet for you...)

Keeping my fingers crossed for you!

Blessings,
Lori

[Butternut]

Usually my lower back will be nagging at me and/or the burning after voiding has been common.

[ICLori]

Oh, okay, thanks! Well, it might be a coincidence, or maybe (hopefully) the Cytotec is already making a difference for you! That's very encouraging! :)

Blessings,
Lori

[purpleviolet]

QUESTION misoprostol - Is it an artificial Prostaglandin 1 (I thought I read that somewhere) or does it make your body make natural Prostaglandin? In the frist scenario it might not matter if you had Omega 6s. In the second scenario it might. Anyone know? After I am thru with Bladder-Q (which hasn't done anything so remarkabke yet after 1 month) I may ask for misoprosotol though a little weary because I tend towards irritable bowel.

[icsonja]

Hi all. well Lori, after reading all the posts and doing alot of Googleing (is that a word yet, if not it should be) I called my Nurse Practioner Micki Autry (a great IC specialist) and asked her about me trying Cytotek BEFORE commiting myself to the BION implant.
After all a pill is easier than surgery any day, so she said she had nt been using it much (only once in fact and the women went off after two weeks due to side effects), BUT she is willing to let me try if I want, she knows I am well studied and would not jump into a new treatment without checking it out fully, so after she speaks with the Doctor Meany (great name for a URO huh?) she will call me today or tommorrow with h, hopefully a RX.
But all that being good, I am worried that since I do have IBS that the side effects will be tough, so my question is are these the sort of side effects that lessen with continued use or are they for the duration of treatment? I can handle ANYTHING for a few weeks if I can get some relief of my IC from it. As you know Lori, I am one who NOTHING has worked for me, and I am in a huge flare since my explantion of interstim, the surgery was very traumatic plus infection with huge doses of antibiotics and stress, plus I got the flu while in the hospital, so my bladder and pelvic floor is screaming at me, it is truely, madly, deeply hating me!! :-(
So here I go, hoping again, you know what, it scares me. I don't want to get my hopes up and be crushed again, this illness plays with you mentally as much as it does physically doesn't it?
Oh by the way, just a side note I suffered from endometriosis for many years, it was the cause of my infertility, and thank GOd I have three children, but I lost 7 all related to endo. The "Hysterctomy from Hell" I went thru (read my story to see why) did at least stop that one worry, of course it caused me to get IC, but that is the way life has gone for me, fix one thing, mess up another.
Sorry , that really sounded like a pity party.
Well I will let you know if I get to start treatment and will post for all to see how it goes.
Together we will cure ourselves, we are certainly motivated enough!!!
Wishing you all the best with whatever treatment you may be using and praying for the day we are all just friends and not ICers,
Sonja.....who is laughing at clicking on "post quick reply" button after writing a novela!

[ICLori]

Hi, Sonja, you have been through so much, I don't think it's a pity-party at all, I think you are very brave! And very strong for not giving up in spite of so much pain and illness and so many losses. I love how you are so brave in trying anything and everything in order to get better!

Like you, I'm scared to death this might make your IBS worse or disappoint you. So I'm sitting here thinking, should I say, "maybe it's best not to try it" or should I say, "well, it might be worth a try in spite of the IBS..." The one good thing is that it does clear out of your system very quickly (extremely short half-life, I think it was only like 4 hours or something) so if you do react badly to it, there would hopefully be a limit to how long you would be suffering.

The package insert I got from the pharmacy said something about symptoms usually resolving within one to two weeks. Basically, I guess the "usual" pattern is for symptoms to start (if they are going to) about one week into treatment, then for symptoms to last one to two weeks, then for things to resolve. But I never know what is meant by "usually." Does that mean that's what happens for 60% of patients...or for 95% of patients? I wish I knew. Maybe your doctor would know more?

The IBS thing really has me worried though. This med is known for causing gastro symptoms, at least the first couple of weeks, and it could get bad. I remember when I read the original study, seeing those patients who discontinued treatment - these patients were like us, severe IC and nothing else worked. I know I would have just about walked on hot coals to stop the IC - if those patients dropped out, the symptoms must have been really, really unimaginably bad. So I'm a little scared for you, I'll be honest. But on the other hand, it would be so cool if Cytotec put you into remission. And there's always the Bion as a backup, and that one person on the boards said it really helped her with the pain as well as the frequency. For me, it did help somewhat with the pain, but not nearly enough, and then it seemed like I was getting worse again gradually.

If you do decide to try this, I hope your doc will work with you by starting with the smallest dose possible, waiting and seeing how your body handles it, and then maybe increasing ever so slowly if your body seems to be adjusting well. Whatever you do, don't take it on an empty stomach, that's what the package insert says. Generally whenever I read those directions, I pay attention to them because it usually means trouble if I don't. So be sure to take the pills (if you decide to take them) with some nice, bland, soothing kind of food, like bread maybe or crackers, and a good enough quantity to make sure your stomach is reasonably full.

I wish I could somehow know if this is going to affect you badly or not - I would hate to see you in pain or with really bad diarrhea - I wonder if your doc would have some kind of emergency plan if that happened? Like, if you got really bad diarrhea, could you take medicine until the next day when hopefully the Cytotec would be out of your system?

That's another thing that worries me - I know IC flareups happen sometimes if we eat the wrong foods. And even though the food gets out of our system quickly, the flareup can last for several days. I worry that IBS might be the same way - I worry that if you had a bad reaction to Cytotec, it might keep your IBS going for a few days.

Hmm...this one is a tough one...on the one hand, this is something that might help with the IC....on the other hand, it could leave you with a lot of gastric distress and you could be miserable for several days. It sounds like your nurse practitioner has seen some patients take this - maybe you could ask her just how bad the symptoms were that the patient described?

Well, whichever way you decide, I hope so much for success for you and no bad side effects. I don't think there is a 100% certainty that the side effects would go away within a couple of weeks, but the insert said "usually." So I do take that to be a hopeful sign. Although I'm thinking, if you up the dose gradually, you might get symptoms again each time you go up...don't know...

Keeping my fingers crossed for you...

Blessings,
Lori
P.S. to Purpleviolet...boy, I honestly don't know the answer to that. Maybe you are right, maybe the EPO is kind of unnecessary...I'll bet that's why Norm didn't have his wife taking it...he seemed really knowledgeable about this stuff. I wish so much he were still on the boards.

[Celeste1737]

Hello Sonja,

A doctor friend of mine said that the common side affect with this medication is diarrhea lasting 1 to 2 weeks. He said after that it's usually smooth sailing. Hope this helps.

Celeste

[ICLori]

Thank you, Celeste! :) That doesn't sound too awful.

Blessings,
Lori

[icsonja]

OK I am tough I can poop my brains out for a couple of weeks if it helps my IC!!!LOL
Sonja

[Butternut]

Today I am ok too! No diarrhea so far. Actually almost the opposite. Sometimes now my stomach feels empty, but it is not. I am feeling like doing more things, because I feel good. That in itself is a good thing! Cytotek is a good thing thus far.
Also no more acid reflux.

[ICLori]

LOL, Sonja, I hear you, I would have put up with two weeks of diarrhea so bad I had to wear diapers, in order to have a remission from IC.

###############################

Butternut, I'm so glad that you don't have any diarrhea so far, but we aren't in the clear just yet. When you wrote about your stomach feeling empty - that makes me wonder if you might have the start of some intestinal/stomach discomfort there - I hope not - and if you do have some symptoms, let's hope it resolves in one to two weeks like the package insert says it "usually" does...

I sure am glad you are feeling good! It might be possible that the Cytotec is helping to make you feel better. I'm glad you don't have the acid reflux anymore, too, that can be very aggravating.

Thank you so much for keeping us up to date on everything, I am just on pins and needles hoping so much this remedy will help you ladies and not give you bad side effects.

Blessings,
Lori

[Butternut]

I woke with a headache BUT I have been around someone with a cold. I am hoping that I am not getting it. Took an Advil. Otherwise feeling fine.

[ICLori]

Hi, Butternut, sorry you had a headache! That wasn't one of the "expected" side effects (they were all gastrointestinal) on the package insert, but anything is possible...I'm hoping it's just a headache and not a reaction and not a cold...hope you feel better soon!

Blessings,
Lori
P.S. I was thinking I should pass on a tip if anyone does get some gastrointestinal symptoms. Over the years, I've suffered just about every gastrointestinal ailment possible I think, LOL - and I found that nibbling on crackers (eating a few at a time here and there) really helped me when I was having bouts of diarrhea, and the stomach cramps that can come with diarrhea. Also it helped me when I had ulcers from taking ibuprofen. So anyway I thought I would pass that tip along, maybe it would help if you got gastro symptoms.

[Butternut]

I just finished vacuuming, without pain. Lord, please let this continue.

No burning. I feel like a new outlook is coming on. LOL

Who all is trying Cytotec, so far? Good luck to everyone.

[ICLori]

Wow, Butternut, that's great news (so far!) I am (very cautiously) hopeful!

As far as I know, you and I are on it and I think Sonja and Celeste were going to ask their uros about this.

Thank you so much for keeping us updated, I sure hope the freedom from pain continues,

Blessings, Lori

[Butternut]

Lori, I just can't thank you enough for telling us all about this. I am praying for all.

[Butternut]

I have been having some nausea off and on today. This evening I have not eaten anything but sipped some milk. I may try some applesauce/cottage cheese.
No bladder discomfort or burning. If I can just make it through this rough period. I can't go back....

[ICLori]

Oh, Butternut, I was so worried you would have some side effects. I hope so much they pass quickly. Everything I have read says the side effects generally resolve within one to two weeks.

Sometimes when I have nausea I take an antihistamine (I have them around all the time because I have all these allergies) and my nausea goes away.

Is there any way you could call your doctor and ask for some anti-nausea (and maybe anti-diarrhea) medicine just in case, to get you through this next 1-2 weeks?

I feel so bad for you that you are having bad side effects. I had slight nausea that first pill I took but then my body got used to it - I don't know why I adjusted so fast to it.

One thing I read (when I was googling about cytotec) was that it recommended decreasing the dose (going to 100 each dose instead of 200 each dose) for a time until your body adjusts. I wonder if you could ask your doctor if that would be possible until you are feeling better?

Crackers always help settle my stomach when I'm sick....whatever you do, don't take the doses on an empty stomach, take with a full glass of milk at the very least....

(((HUGS))) I sure hope you will be feeling better soon. On the plus side, at least your bladder is feeling better.

Blessings,
Lori

[vm]

I'm so glad you are getting some relief, Butternut. I agree with Lori - maybe an anti-emetic or reducing the dosage for a time would help????

[pomeranianic]

I happy your feeling better. I will pray it stays that way.

[Butternut]

Yesterday the grandkids came. I made spaghetti, garlic bread, corn, coleslaw and brownies. I had a little of each. Two hours later I noticed a very slight burning after voiding. The nausea is better and I think I need to eat more often to help that.
No burning this morning though!

[ICLori]

Hi, sweetie, I'm so glad the nausea is better, it sounds like you have a great plan for getting through this next week or two of discomfort - maybe it will be easier on your system to keep a bit of food in there at all times! (I really did find during all my episodes of gastritis, diarrhea I used to get with my periods, etc. that I did so much better by munching on crackers all day long, keeping my system from ever being empty.)

I'm sorry though that you got some slight burning after voiding - I wonder, though, was it less than you might have had otherwise? I'm still hoping that the Cytotec is making somewhat of an improvement in your symptoms.

I remember the other posts I read, the one lady said at two months out on Cytotec she was 70% better and Norm's wife I guess took 9 months to really be in remission totally. So maybe for most people this really does take time to reach the full effect.

I'm glad at least there is no burning this morning, that's good!

Thank you so much for keeping us up-to-date, I think that this will really help people to decide if this is a remedy that they might want to try or not.

Blessings,
Lori
P.S. That sure sounds like a delicious meal you made, you must be an awesome cook! :) I'll bet the grandkids especially loved those homemade brownies!

[ads]

Butternut,

Hang in there with your current med and don't give up too soon. We have to remember it took our bodies time to develop IC and healing is usually not a fast process whether we are using medication or another treatment. Unfortunately, the wait is miserable and the anxiety it can produce. The torture and side effects of the IC treatments produce are terrible, yet hope keeps us all alive and moving foward while giving us the strength to tolerate the situation.

I look foward to coming on the board in the future and see you are doing well and your health has returned.

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[ICNDonna]

Butternut: If you ate spaghetti, garlic bread, corn, coleslaw and brownies, it's not surprising that you had a flare, tomato sauce, corn, the vinegar or mayonnaise in coleslaw, and chocolate are all common flare foods. In my own case, the garlic would be an additional problem.

Hopefully you'll get past your flare soon.

Donna

[ICLori]

The good news is she's already over the flare as of this morning - but Donna is 100% right, those foods are very common irritants for IC. It just goes to show that the Cytotec has not yet reached 100% yet...not surprising, reading the other posts from people using Cytotec who reported that they were 70% better after two months and 100% better after nine months. Apparently this drug usually takes some time to reach peak effectiveness, sort of like Elmiron.

I'm glad that her flare was very brief, though.

Blessings, Lori

[kimmichele]

I am going to the uro on tues and taking the info on cytotec. I am down from a pain level of 10 to a 3 due to the almond milk. I find too much of it makes the vulva tissues itch due to sugar in it or the oxalates.

I will continue to avoid trigger foods even on the cytotec as I am hoping the drug will allow me to completely heal the gag layer. This would be a miracle after 25 years of suffering!
Kim

[ICLori]

Hi, Kim, I'm keeping my fingers crossed for you that the uro will allow you to try this (being menopausal will probably help in getting this drug, as the primary worry is about pregnancy) and if so, that you will experience significant relief without too horrible temporary side effects. (64% of the people in the study did have side effects, so that seems unfortunately to just be the norm - thankfully the side effects are "usually" (according to the docs) temporary.)

That's wonderful that Almond Milk has helped you - I am one of the ones who got a bit of relief with it too! I wonder, the longer you drink the Almond Milk, if it might help you more and more? I hope so! Anyway I hope that you will be in remission soon one way or another, you've already suffered so much, and had so many treatments not work so well for you, it's time for you to have the miracle happen for you!

Blessings,
Lori

[Butternut]

Thanks everyone for the well wishes and help!
Yesterday's sampler platter (while the grandkids were here), was a little test for me. For a year I have not enjoyed tomato sauce because of IC and during the times that I suffered because of it, I was also raw from the throat down. After trying pizza with tomato sauce on it, I was suffering in bed for a couple days.
Yesterday's spaghetti sauce, even though it wasn't a whole lot, I also had the small amt of cole slaw and then a chocolate brownie! I had the slight burning temporarily, last night but then I was ok this morning. My back is not hurting. No symptoms that would put me in mind of suffering in bed again. Thank goodness! Yes, I do believe Cytotec is helping already and yesterday was the first that I had taken the third pill for the day.
This afternoon we all went to the movies and had popcorn. By this time I would usually be having heartburn trouble from the popcorn. None so far. Cytotec is definitely helping that department.
So far, by weighing Cytotec on the scales, the good much outweighs the bad. The bad only being that it is another pill and that in the beginning I had some nausea.
I will be honest and open about how this goes. Now I must watch what I eat because I don't want to start gaining weight or cause the bladder not to have as good a chance at healing! I felt so good yesterday morning that I was dancing around to the radio acting like a fool, trying to make my husband laugh while he was hammering a drywall project he has going on. LOL It's good to feel good again.

[Oxana]

It is wonderfull!!! I'm so happy for you and pray for your fast remission and it can last forever! You deserve it! :woohoo:

[ICLori]

Hi, Butternut, that does sound overall like the benefits are worth the downsides! I am so glad. I'm still on pins and needles though - I think especially until you are through the first two weeks and your gastrointestinal system goes back to normal. I'll be very happy when you don't have those side effects anymore! And I will hope that the medicine will work better with each passing week or month, until (I hope, I hope) you can eat anything at all, as much as you want of anything, and never feel any burning or discomfort again.

But I am so excited for you that this is helping you some, that I feel like dancing too! :) And that's a bad thing because I'm really an awful dancer, LOL!

Blessings,
Lori

[swarr]

YOU GO Girls!!!!!!!!

[Dianne]

Well I tried it again and bombed on the first pill. Same as last time. Still trying to get back to where I was from the flare. I so wish I had been one of the lucky ones but I'm so happy for those of you that this is helping. Enjoy!

[ICLori]

Argh! I'm so sorry, Dianne. I think you've tried everything under the sun now and nothing has worked! I'm so sorry. Is there anything left for you to try? I'm hoping there is at least some hope left...

Blessings,
Lori

[Vicki]

Lori- I had to go out of town. When I increased my dosage to 200/3x day my endo really flared up. In fact, I am going tomorrow to see if I have a cyst. My belly has been super bloated since I upped the dsage. I am going to go back down to 100mg. I am now in a flare with my bladder also. I think it is the endo bothering my bladder not actually IC. I dont respond to IC treatments and nw this drug that obviously manipulates the hormones somehow is causing me to flare. I think it is time to take out my remaining ovary and try to do without hormones for a while until the endo whithers up and dies. -Vicki

[ICLori]

Hi, Vicki, I'm so sorry. As far as I know, misoprostol doesn't affect the hormones, exactly, but it can cause uterine cramping (because it stimulates muscle contractions) and I wonder if that would aggravate the endo in the pelvic cavity? I have endo too (probably on the bladder, too, that's what my docs think) so I understand the frustration.

I'm on Aygestin now (a progesterone-only type pill) to keep my endo under control. It's too soon to tell yet if it's going to be kept under control or not this way but I'm hoping it will. Have your docs tried you on anything like that? I hate to see you have to go through another operation. I've been through a couple of them now - no fun!

The belly bloating is unfortunately an extremely common side effect of this stuff - gastrointestinal symptoms - something like 64% of the people who try this get that sort of thing as a side effect but the good news is that it "usually" goes away within a week or two as the body adjusts. But whenever I see the doctors saying "usually" that means that "sometimes" it doesn't go away! So who knows.

I'm just so sorry you are so uncomfortable, and I know how disappointed you must be. I hope that this is less troublesome for you at the lower dose, or maybe it's just not the right drug in this case.

I'm thinking though if it's endo, if it's 100% endo I mean, maybe Aygestin would work?

I hate endo, too, almost as much as I hate IC. :( Bad diseases!

Hope you feel much better soon,

Blessings,
Lori

[Butternut]

Update: Still doing ok on Cytotec.

Getting ready for work. More later.

[ICLori]

Hi, Butternut, thank you! I am so glad you are still doing okay. I hope the side effects aren't too bad anymore? I'll stay tuned, LOL! Seriously I get so excited when I see a new entry on this thread, I always hope it's good news, but then I get sad if it's bad news.

Blessings,
Lori

[Butternut]

Thanks Lori. I am really hoping that this lasts and keeps improving!

[kimmichele]

Well I had my appointment with Uro today and took in the studies re cytotek. She would not give me the drug because my pain is only in the urethra and she says that the urethra can't hold the drug and that it just passes through.

My question is do any of you taking the drug have urethral pain and has it helped. If your urethral pain is better please write a message back. I will print it off and send it to her. Also I'm going to call the researcer in Austrailia. This was a disappointing day. All she would prescibe we was urelle which turns your urine blue. I think I took this 20 years or so ago with no results.

Kim

[ICLori]

Oh, Kim, I'm so sorry. Doesn't she know that urethral pain is often referred pain from the bladder?

My guess is that her REAL reason for denying this to you is that it is part of the medicine in the morning after pill. Many doctors/pharmacists these days have a knee-jerk moral reaction to this medicine because of that.

Also she could be wary if you are of child-bearing age. There are substantial risks.

It took me 2 years and 5 doctors before I found one who would prescribe it.

I'm so sorry. I often worry about a doctor denying me the next place I move to - I tell myself that then I will do the illegal thing and order it on-line. Or go to one of those places that is barely legal because you pay a doctor to write a prescription but it's not like really going to a doctor. I don't care if those things are dangerous, I just want my Cytotec! But this doctor told me that probably I would not have a problem getting it continued because I have already proven that it helps me. Plus each year I am getting less and less likely to become pregnant.

Blessings,
Lori

P.S. I would say that at least half of my pain was urethral. This helped me not have any pain! Again, it was most likely referred pain.

[kimmichele]

Lori
I am 50 have haven't had a period in two years. I believe that she is afraid to prescibe the medicine because it is not approved for IC and because she thought I looked good today. I tried to explain what a restrictive diet I live on and how this will eventually do me in.

I didn't emphasize the referral pain bit. The other night I took one of my husband's muscle relaxers and it helped alot. I think I feel the pain in the urethra but is is really pelvic floor pain.

Was your pain in the bladder and urethra?
Kim

[ICLori]

Argh - I hate these narrow-minded doctors who would rather let a patient be in horrible pain than to take a chance on trying something!

I'm so sorry....I just don't understand these doctors at all.

My pain was probably more urethral than bladder actually - I know I always used to put the hot water bottle between my legs, rather than on my abdomen, for the best relief. That says to me, that a lot of that pain was urethral in origin. And Cytotec helped me tremendously with that!

I'm so sorry - maybe try another doctor?

Blessings,
Lori

P.S. Although - if the muscle relaxer helped you - maybe the doc would write you a script for that and you would be just fine? Anything that works - that's my motto!

[Butternut]

I had lots of burning after voiding and lower backache, especially during flare or if it was time for another instillation.
When my symptoms were really bad, I had lower abdominal pain.
I think my stomach problems (acid reflux, cramping after eating) that had been so bad in the past month were caused by all the medicine that I had been taking for the burning, plus Advil, just so that I could go to work and remain there for my twelve hour shift.
I just feel so much better in everything to do with the bladder and the bonus is that Cytotec is helping my stomach too!
I hope you find help soon. Take care.

[Vicki]

Lori- I went to the gynecologist yesterday and I do have a cyst on my remaining ovary. The ovary is also surrounded by a large pocket of fluid that the doctor suspects is blood. He said that possibly a cyst ruptured. He put me on birth control pills for three weeks and then I go back for another ultrasound. The birth control pill he put me on is OVcon. It is mainly Aygestin with a small amount of estrogen. I woke up nauseous and vomiting in the night. I suspect it is from the birth control pill. I have stopped the Cytotec. -Vicki

[ICLori]

Oh how terrible! This endo stuff is almost as bad as IC :( Did he say it was the Cytotec that made the cyst grow and rupture? Just curious now because I have endo too and if the Cytotec causes the endo to grow, that wouldn't be good...

The nausea and vomiting could have been the Cytotec too if you were still taking it at that point...it does clear out of your system within hours though so hopefully if it was that, it will stop soon.

My doc put me on Aygestin only (5 mg - way more than in the average BC pill he told me) because he said any estrogen at all will make my endo grow faster. He said this pill would even help suppress my own estrogen. Anyway my estrogen levels should be falling fast now that I'm so close to menopause. So hopefully the endo won't have much "fuel" to grow on.

I sure hope you feel better soon and that the next ultrasound shows the endometriosis is shrinking and going away!

Blessings,
Lori

[Vicki]

Lori- He did not say if it was the Cytotec. However, that is my suspicion. I just think something that can put a woman into labor must affect the hormones somehow. I am so thankful it is helping you and Butternut. Someday, I will find something that helps me. The Cytotec definitely did not cause the nausea and vomiting because it had not caused it thus far and I had not taken for about forty eight hours prior to the vomiting. -Vicki

[ICLori]

Oh, okay, thanks!

Actually the way Cytotec works for labor is that it's a prostaglandin, and prostaglandins cause the uterus to contract (starting labor.) That's why it's not given to women who are not yet ready to deliver - it would cause the uterus to contract and expel the baby prematurely.

But it's not a hormone in the sense of estrogen/progesterone/testosterone or anything nor does it affect those hormones.

But it does cause muscle contractions of the uterus. The uterus is sensitive to prostaglandins. That's why when you have a period and have bad cramps, it's because of the prostaglandins.

Actually they've injected prostaglandins into men and men have had almost the same sensations (only not in the uterus, rather in the bowels...)

Hope that helps explain what cytotec is/isn't! :)

Blessings,
Lori

P.S. There are a lot of different "series" of prostaglandins so I thought I'd better say what series misoprostol belongs to....

Misoprostol is a synthetic analogue of prostaglandin E 1.

[icsonja]

HI all just to keep everyone updated, I have called my Uro and she is confering with my gastroenterologist to see how to manage me if I try Cytotek. I called her agin this AM and told het that is she didnt let me try it I would probably go DR shopping until I found one who would, but that I really did not want to do that since I trust her and she understands my body. But since its either cytotek or Bion surgery for me, I want to at least give a non-surgical treatment a chance. I was not rude at all, just firm and matter of fact. I told her I was not expecting miracles (not anymore) but I needed to try this treatment.
As a side issue Lori, is this med expensive? I need to know so if it does get RX'd to me I will keep one of my 3 alloted free RX's open for it. It is awful that I am only allowed 3 RX's a month and I get SSI!! November I had to fill 16 RX's, the budget cuts are really u hurting some of us.
Sonja

[ICLori]

Good for you, ICSonja! Keeping my fingers crossed for you! Sometimes we have to just get tough with these doctors, I think! I honestly don't know if Cytotec will work for you but the one study was promising, and it seems to help some of us who try it.

I remember that my urogyn told me cytotec was dirt cheap. I will have to go see what the price is at on-line pharmacies (but I think those are generally more expensive than regular pharmacies?)

Blessings, Lori

Well, I looked at one on-line pharmacy and it said $77 for 120 200mg tablets. I really do think that a "real" pharmacy would be somewhat less though. Anyway that would be enough for 40 days.

[kimmichele]

Thanks Butternut and ICLori. I copied your messages and am sending them to my Uro. I have been with her for over 10 years but I have not done much in last 10 years - just stay on very, very narrow diet (which will kill me eventually). She was not my uro for the 15 years when I was going thru diagnosis and trying all the treatments. (I had many - I can't even remember their names - we moved twice) I'm afraid I've left her with the impression that I am managing OK since I don't come in alot. Well, I'll give her one more shot and start shopping around.

I think if it helped Butternut's esophogus (sp) then it could help my urethra. Obviously the cytotec doesn't sit in the esophogus.
Kim

[kimmichele]

HOw do I search for Bobs messages about his wife? I would like to copy them and put them in my letter to uro.
Thanks
Kim, Computuerly challanged

[Oxana]

Sonja! I pray for you be able to have Rx for Cytotek and it will help you great!
Please, let me know how everything will go, OK? :kissing:

[ICLori]

Hi, Kim, one thing your uro might not have been keeping in mind is the fact that this medicine stimulates the mucuous-secreting tissues (like the urethra and bladder lining) to secrete more mucuous and also bicarbonate (making it better able to resist acidic stuff like urine.) That is a big part of why it helps - why it's cytoprotective as the study says. It has nothing to do with "sitting" in a certain part of the body - and everything to do with being absorbed into the bloodstream and working on the body from there.

Also, to bring up old messages - do you know how to use the search function? There is a blue bar on the top of the message boards. The dark blue part has words written in it like "user CP Register FAQ Member List." Do you see the dark blue bar? Now that you have found the dark blue bar, look towards the right-hand side of the dark blue bar. You will see the word "search." When you click on "search" a box will open where you can type what you would like to search.

I found Norm's old posts by typing "prostaglandins" in the search box. It brought up quite a few old posts, not just Norm's posts, but by looking at the posts carefully, you can see which ones you will want to read and copy.

Hope that helps some!

Blessings,
Lori

[MelindaP]

I am following all of this with great interest!

Kim, since we have such similar symptoms, please let me know if you try it how it works for you. I am going to bring this subject up to Dr. Moldwin when I see him in 2 weeks!

Melinda :)

[MelindaP]

ICLori-

I forgot to mention that I looked at some older threads & you had said your pain went away when you got your period. That is exactly like me! Or was like me, I should say. Since I got pregnant soon afterthe IC started & now am breastfeeding, I have not had a chance to test out my theory. But before the IC hit me full blown, for the last few years about 5x a year I would get a "stingy" sensation in my urethra after I urinated a few days before I would get my period. When I got my period, all my symptoms would go away! This would not happen every month though, so maybe my IC "woke up" due to all the infertility treatments I did. But my symptoms would drfinately go awway with my period which always led me to believe this disease was hormonal for me. Before I went off the pill I was on a low-dose Pill that I never got my period. I guess I never built up a lining to shed because the estrogen & progestrone were so low. I also never had IC symptoms. The symptoms only started to show up after I went off the pill & started to get my period.

Lori, did you happen to have a lower back ache before you would get your period? Mine started when I went off the pill a few days before my period. It got worse & worse over the years until my back pain would start with ovulation all the way until I got my period. It was so bad, almost debilitating!It would only get better after I got my period. It got so bad towards the end before I got pregnant. I thought I had endo, but had a laproscopy done & there was no endo. At the time my RE said it might be related to prostaglandins!!!!!!

WE have a boy & a girl now, so we are not planning on more children. You mentioned that your IC was alot urethral too. Mine is pretty strictly urethral-irritation 24/7. Maybe I could try the Cytotek when I am done breastfeeding my daughter.

This is all very interesting!!!

Melinda :)

[Cheries]

I have been following this thread closely as I have to go in to my urologist next week and want to take info with me. My question here, is in relation to the uterus. You indicated that the medicine causes contractions of the uterus, wouldn't it then cause pain etc. and cramping? I'm a little confused on that.

[ICLori]

Hi, Melinda, I didn't have any backaches with my period or around my period, but I have heard of other women having that symptom. If you do try Cytotec, I hope so much that you will have success with it!

Cheries, I thought it would make my period worse, too, but for some reason it stopped me from having my usual cramps when I had my period. I have no idea why!

I also had this idea that as soon as I started taking the medicine, I would feel my uterus cramping - or that I would feel SOMETHING in my uterus, you know? But nothing - didn't feel nary one cramp. And so far I haven't heard from anyone else trying this, that they felt uterine cramps, either. So I'm sort of confused, too. All I can figure is, maybe the cramps only happen when there is a pregnancy for some reason? I don't know.

Anyway all I know is I haven't felt any cramps, either during my period or in-between periods. In fact usually I have awful cramps and this time I didn't have any cramps, weird.

Now, I know that only Series 2 prostaglandins (they are divided into 3 categories) are the ones that cause pain and inflammation. Prostaglandin 1 and 3 each have antiinflammatory actions instead. So they are "good" prostaglandins so to speak. Misoprostol is a synthetic analogue of prostaglandin E 1. So misoprostol (Cytotec) is under the "good" prostaglandin category of 1. In fact part of me wonders if the fact that this prostaglandin is antiinflammatory, might explain why it seems to help some of us with IC.

Blessings,
Lori

[ICLori]

P.S. Lots of people have been curious lately as to whether or not I am still in remission on this drug, so I wanted to say to everyone, yes, I am still in remission!

I promise that if my symptoms ever do come back, I will delete the "in remission since" from my signature, so you'll know.

Blessings, Lori

[icsonja]

HI all, well my phone calls to my IC medical people did it, they said "go for it" and called in a RX for Cytotek :woohoo: Lori you are so right, you just have to be firm and prepared when you talk with your Docyors.
Anyway they are starting me on 100mg 4x a day and after 4 weeks if needed they will up the doseage. But they also RX'd Zofran (in case of nausea) and RX strength anti diahrrea med. So we are hoping that those meds will help me get thru the side effects. My gastroenterologist came up with adding the two meds to use PRN since I have IBS, Iam expecting some side effects and I just want to try to make it past them without giving up or getting too weak from being sick. Planning ahead!!
So I will most likely start the meds on Friday, and I will let you know how each one goes down!(and hopefully stays down)
Lori my Doctor said something about it (cytotek) being released in MCG's not MG's , so I am thinking it must be time released, but a short time release sice I will be taking it so a often, do you know anything about that? I will ask my pharacist too. I like to know all I can about a new med, the half life, time release, whaat to eat and not to eat etc. I am a little obsesive about my RX's, I have seen too many oopps on RX's not to be careful.
Here wishing me luck ( I need all the wishes I can get so I will unabashably add mine)
Thanks to you all (extra Kudos to you Lori)
Here I go again, (Isnt that a Dolly Parton song?) :biglaugh:
Sonja ;)

[Oxana]

It's wonderful, Sonja!
I wish you LUCK to start feel well soon! I pray for Cytotek put you into remission!!

I'm very happy for you!

[Butternut]

Oh, I sure hope Cytotec works for everyone!!!!! Yesterday I had three strawberries in cottage cheese. No symptoms. Last night they had some chocolate Little Debbie cakes at work. I ate two. Still doing ok.
Sometimes I am even scared to talk about it for fear that it will quit working. I just don't know how much I would give for a big, tall glass of cool, Campbell's tomato juice! I sure miss it. Maybe in another week I will be brave enough to try a small glass. What else have you all been missing that we could try, gradually, in small amounts? Catsup!!!
I would like to be able to bend and stoop and walk and work in the garden this spring, without paying for it the next day. Oh, to sit on the back porch and eat a big red tomato fresh from the sunny garden. That is a good old memory of my Grandmother and myself at about the age of four.
Good luck to all.

[icsonja]

I just want to eat a big juicy orange, I dream of that sometimes.
Sonja

[Dianne]

Orange juice. A big whopping 12 oz. glass on ice. That's what I dream of :)

[icsonja]

OH and my fresh homemade salsa,muy bueno!
Sonja

[ICLori]

Hi, ICSonja, wow, that's great news! Good for you for being very proactive in your own care and not letting the doctors brush you off! I know it takes some courage to be forceful like that.

I am hoping and keeping my fingers crossed that this may give you some significant relief, without the side effects being too terribly bad.

With your IBS, I'm about 100% certain it's going to hit you hard gastro-wise. But it looks like you and your docs have come up with a good treatment plan for that, and hopefully you will be able to endure the expected one to two weeks of bad symptoms.

I know you are like me, and probably hesitant after so many failures, to hope again. It's probably best to just tell yourself, "well, this probably won't work either but at least I can tell myself I tried everything before surgery." That way you won't be quite as disappointed if it doesn't work. Because there is only that one small study, and while it was promising enough for me to say "hey I want to try this" I know that small studies like that really don't tell us anything - we can't count on them. So we have no idea what the true percentage of IC'ers would be who would get helped by this. And we don't know if it helps people to go into full remission, or if it only helps a small number to get all the way to remission. Maybe it only helps people be about 50% better or something. We just don't know. So I am hoping you will go into this with a little bit of hope, but a whole lot of caution. I know how much it hurts when something doesn't work - if I had to type a list of everything I tried before this, that didn't work, made me worse, or just didn't work well enough, it would take pages.

Of course I am sure keeping my fingers crossed for you, and also hoping that Butternut gets better and better and can someday have tomatoes and tomato juice and everything, without pain.

I know Cytotec has a very short half-life - of hours, not days - which can be a good point if a patient reacts badly to it, because it does clear out of the system pretty quickly. But I'm not sure about the timed release or anything. I'm hoping your pharmacist will be up on all of that! I know they generally do have you taking it several times a day because it doesn't last in the body all that long.

Boy, I'm excited for you! I sure do hope it works really well for you without really horrible side effects.

I hope so much that everyone who tries it, gets better. I feel so bad for Vicky and Dianne and others who tried it and got bad reactions to it :(

Blessings,
Lori

[KarenIC]

Hi Sonja!

Way to go! Best of luck as you start your treatment with Cytotek! I hope it will put you in remission real soon. Keep us all updated on how you're reacting to it.

Take care of yourself.

Love,

KarenIC

[violet]

Hi, tomorrow I see my Doc. to ask him for some cytotek.I have never seen this Doc. before, we moved here and I had to find a Doc. I brought all my files so I hope I don`t have to go though all those alful tests again. I will keep you posted. violet

[icsonja]

Thanks Lori for once again being my guiding light, and please I want to tell you this now, in case cytotek doent work or makes me worse, you didn't talk me into it, it was my choice after researching and talking to Doctors and putting in everyones experiences, I made the choice to go ahead, so don't feel bad if it goes bad for me,OK?
And if it puts me into remission, you can take all the credit for getting me there!!!LOL
And if it does work, lets say we make plans to meet someday and have margarita to celebrate our briillance....roflmao.
Well got to get to bed, I have to hit Wal-mart early in the AM to stock up on adult diapers and industrial wipees, just in case that 100% is a sure thing!!!!
First pill going in Friday AM
Will be reporting in all the fresh poop (pun intended)
This is Sonja reporting from a hopeful place, which is not my usual site.
Love to all.

[ICLori]

Hi, Violet, a good idea might be to print out a copy of the study abstract (I think it's buried in these posts somewhere) to take with you to your doctor. I found that none of the doctors I approached to try this ever even heard of this treatment, because it was only published in a European urology journal and not an American one.

XXXXXXXXXXXXXXXXXXX

Hi, ICSonja, LOL! I'm there with the margaritas! I also know of a great Mexican food place here so if you are ever in town...!

Honestly I think the adult diapers are a good idea. I know they say to be extra careful with this med if you have IBS...so I have the feeling it will be tough for a week or so...but I hope not so horrible that you can't get through it. Maybe with the meds it won't be very bad at all? I hope it won't be bad.

I'm actually excited for you, too. I keep telling myself, don't get too hopeful, it might not work, the side effects might be too bad to continue, etc. but then I get this voice saying, but wouldn't it be cool if it helped her a lot like it has for me and Butternut and Norm's wife?

So I sure am keeping my fingers crossed for you! I'm guessing that the first day or two, you probably won't have bad gastro side effects - they say that the effects tend not to hit really bad until about one week into therapy, then you have one to two weeks of side effects, then they go away. Generally that's what the pattern is, although there could always be exceptions.

Hoping this works for you and for everyone who tries it!

Blessings,
Lori

[akrose]

Hi - my screen name is akrose, i am 47, a nurse for 20 years, used to be a great nurse, could work 16 hr shifts and take care of up to 8 pts at a time- best of all, keep them all pain-free- that was my greatest gift to them. Got my masters degree in nursing- graduated summa cum laude- very highly motivated- high achiever, and even went to Duke in Raleigh, NC this year to start working in the field of Clinical Research as a Coordinator, then something snapped in my body. Last March, I got a bad sinusitis, which became a facial cellulitis, then had to go on 2 very powerful antibiotics- Dicloxacillin and Augmentin- took them for the last 2 wks in March 2005- developed nausea, vomiting, diarrhea, vaginal/ rectal fungal infections, mouth sores. But by March 31, the facial cellulitis was gone, but I had lost 10 lbs from my already skinny frame. Then April 1 2005, I woke up with a terrible bladder infection, went straight to the family doc- started on bactrim and pyridium, after one week it was gone. Then after another week it came back, but just like all of you, my urine was sterile (clear). That was when my life began to fall apart. This is part one- next I will post part 2 (which is the end)

[akrose]

OK, I forgot to tell you, I am a nurse on a Urology floor, so I know all those docs and let me tell you most of them talk to the patients while they are walking backwards out the door. So I know how they avoid issues, most are good with prostate, kidney stones, bladder ca, easy surgical conditions, but i.c., the one you all discuss is not easy. It took 4 different urologists, 1 gynecologist, 1 urogynecologist till I found the right doc for me. I have had the ususal 6 DMSOs and gone to work for 8 hrs after, had my urethra stretched after being hydrodilated, and of course he saw nothing. Had the KCL test which was negative, except that I burned like I was on fire in my urethra afterward- cruel things to do to human beings without appropriate pain relief. I found the pain relief- the pelvic muscles tighten and tense when the urethra and bladder are irritated- so the question was- what relieves muscle tightness- a muscle relaxer- Ativan 0.5mg po- that is what finally gave me some relieve. So this went on from April 2005 till Nov. 2005- when I found Dr. Kurt McCammon in Norfolk, Va. He increased the Elmiron to 600mg qd, Atarax10mg po qd, Elavil 25 mg po qhs, Neurontin 300mg po Bid.

[akrose]

Tried Doxycycline, sporanox, Coral Calcium (Jack and Jill people)- did not work. Now on N-Acetyl Glucosamine, Calcium citrate. And thank God for Dr. McCammon and his respect for my research- which thanks to IC Lori-he just started me today on Cytotec (Misoprostol) 200mcg po tid. So I took my first tablet this evening, and I am believing I will following Lori and butternut into the wonderful world of remission. Oh, by the way, I never made it to Duke to start my research job and I am getting ready to quit my hospital nursing job- all do to the pain of being up and down- mostly on my feet for 8-9 hrs per working day. I am now a 2 day a week home health nurse, and I am trying to like that. But the hardest problem is that there is so much I still want to do in my life, and I need to be up on my feet and healthy to do it, so I am praying to God and taking my meds, and visiting my doc, and thinking as positive as I can, that I am headed towards remission. Lori- I hope to tell you how great a large glass of lemonade tastes in about 1.5 weeks. Have a nice evening to all. Oh- I found a great book- it is called Morning Has Broken- written by Emme and Phillip Aronson- he had IC and it went away in one year, -he said that as mysteriously as it came, it went- that would be a perfect description.

[Baba Yaga]

Best of luck to you akrose.

Lori, do we have a list of who benefitted here from misoprostol and who did not, or could not tolerate it?

And who is this famous Norm?

[violet]

I went to my new Doc. today and yes he gave me a pris. for misoprostol and for estrace cream. But I have to get off my Lortabs. He gave me a pris. for ultram. Says it should work after I get off Lortabs. I will start tomorrow morning I will let you know. I feel so hopeful. Thank you Violet

[ICLori]

Hi, Akrose, I am so excited for you and hopeful! I know you've been through so much hell...I hope so much this gives you your life back! The only thing I'm thinking is, if you do have some pelvic tension that doesn't go away, some form of PFD, you might still need the muscle relaxers too, unless maybe if the bladder pain goes away, your muscle tension goes away then too.

I sure am hoping so much this works for you, without bad side effects!

@@@@@@@@@@@@@@@
Baba Yaga, if you do a search on "Prostaglandins" you will find all the old posts by Norm about his wife and cytotec - there were a whole bunch of them - the search function on the boards is extremely useful in bringing up old posts like that. It's in the blue bar above the message boards. If you click on the word "search" a box will open up where you can type your search term(s).

So far, Dianne could not tolerate the medicine (the first dose hurt her bladder,) Vicki felt that it made her endometriosis worse (that's not one of the listed side effects, but you never know, anything is possible,) and Butternut and I felt that Cytotec benefited our bladders. The rest of the people, are just starting this now and I would imagine it will be awhile before we hear one way or another, probably a month at least in most cases.

Of the old posts, Norm said his wife went into full remission at about month 9 of taking the Cytotec, and one lady from New Orleans posted that at two months on Cytotec she was 70% better and was going to go off the narcotics she'd been on 24/7. Haven't heard from either of those two posters in ages so I think they are gone now. But I would like to think that both people who benefited are still doing well.
@@@@@@@@@@@@@@@
Violet, I sure hope this works for you and doesn't cause bad side effects! I sure am keeping my fingers crossed for everyone!

I wonder where Butternut is? Haven't heard from her in a couple of days, hope she isn't sick or anything, hope the Cytotec is still working good for her bladder and stomach!

Blessings,
Lori

[Butternut]

Hi everyone! I've been dancing in the kitchen this time. LOL.

Still doing ok. No diarrhea, no pain, no burning. I am drinking some 90% acid reduced coffee this morning just to try it. I put some cinnamon/vanilla creamer in it.

We have snow here this morning but the birds are still coming to the feeders. Even in the little bird's life, they have difficulties too, like all this snow and they just keep trying. Don't give up, keep trying. NEVER GIVE UP! We have to keep helping each other. If it weren't for this IC board & messages and all these wonderful people, I would still be suffering, not knowing that there was an answer for me. The doctors just don't know! They just plain don't know what to do to help us! We have to show them. They don't have time to do all the research but we can take it all to them. We have proof.
Thanks everyone. I wish the best for you all. The world sure looks better when a person feels good.

[ICLori]

Oh, Butternut, I am so glad you are feeling okay! I had just sent you a PM because I was so worried that the nausea might have come back or something. I'm so happy to hear you are doing okay, no real bad gastro symptoms or anything, and it sounds like the cytotec is still helping your bladder and heartburn, that's wonderful!

I am so happy for you (and for me!) and I just hope so much for those who are trying this now, that they have good results too.

I'm a big believer in never giving up, in trying everything, even if it sounds outlandish or even if there is only one study done on it. I mean, it makes sense to try all the standard things first - we know more about those meds and there are more studies done on their safety etc. - but I always thought it would make sense to try anything rather than just giving up and living with bad pain.

I'm so glad this has helped you, I hope so much it helps you more and more the longer you take it!

I do think it might normally take several months to reach full effectiveness - I remember Norm saying it took 9 months for his wife to really be in full remission. So we have to be kind of cautious in trying our trigger foods, at least the first few months we are on this.

Hoping for full remission for everyone who tries this!

I'm loving watching my birds out in the feeders too - I have two regular feeders set up and three finch feeders (we seem to have an awful lot of finches in this area.) There are lots of trees and bushes in my backyard plus a sort of a creek running through my front yard (spring or something like that) so the birds always have fresh water to drink and a place to hang out, and plus I always keep my feeders full, so they figure this is a pretty good place to call home.

Boy I'm just so happy to know that you are feeling good and able to enjoy life once again! That's such great news!

Blessings,
Lori

[Butternut]

I wish we could let Norman know that he was right. I wish we could thank him.

[ICLori]

Me too! I don't know where he is. I even tried to locate him on the internet but maybe he used a pretend name on these boards.

Well, wherever you are, Norm, thanks so much for having originally posted about this. I sure hope he was right about those researchers doing a new study on this for IC...I want more studies to be done! That one study isn't nearly enough to tell us anything.

Blessings,
Lori

[davidr]

I accidently clicked the I Love You Icon but it won't let me take it out. It must ba an omen. A positive attitude goes a long way and I know in my heart you will be just fine. I want to learn all I can about this so I can understand and help you in any possible way. I might even rub your feet. Keep a smile on your face and never look back. :love: Hi - my screen name is akrose, i am 47, a nurse for 20 years, used to be a great nurse, could work 16 hr shifts and take care of up to 8 pts at a time- best of all, keep them all pain-free- that was my greatest gift to them. Got my masters degree in nursing- graduated summa cum laude- very highly motivated- high achiever, and even went to Duke in Raleigh, NC this year to start working in the field of Clinical Research as a Coordinator, then something snapped in my body. Last March, I got a bad sinusitis, which became a facial cellulitis, then had to go on 2 very powerful antibiotics- Dicloxacillin and Augmentin- took them for the last 2 wks in March 2005- developed nausea, vomiting, diarrhea, vaginal/ rectal fungal infections, mouth sores. But by March 31, the facial cellulitis was gone, but I had lost 10 lbs from my already skinny frame. Then April 1 2005, I woke up with a terrible bladder infection, went straight to the family doc- started on bactrim and pyridium, after one week it was gone. Then after another week it came back, but just like all of you, my urine was sterile (clear). That was when my life began to fall apart. This is part one- next I will post part 2 (which is the end)

[akrose]

today is my second day on cytotec, no nausea,no vomiting, stomach ok. Still waiting to see what changes are about to occur!!!!

[ICLori]

Glad you aren't having any bad side effects yet - those tend to hit about one week in, though, so we aren't in the clear just yet.

It might take a couple of months (or more) to notice a big difference....and if your discomfort is from nerve damage or PFD rather than from a damaged lining of the bladder, it wouldn't be of any help at all...

That's one of the things that is so frustrating about IC, it can be caused by everything from endo on the outside of the bladder, to a damaged lining, to nerve damage in the spine, to pelvic floor dysfunction...so no one medicine will work for all in that case...

But I'm keeping my fingers crossed for you!

Blessings,
Lori

[icsonja]

HI all, well first cytotek down @ 6 pm and I did have some sharp stoamce pains within 15 minutes that lasted for about 4 hours on and off, but no nausea or anything else, but it was only dose #1.
I am pretty sure I will have some rough side effects since I hace IBS, but I am just hoping I can out last the side effects, s I can see if the cytotek will improve my IC symptoms.
So one down 43 to go. Wish me luck!!!!
Sonja

[ICLori]

Hi, ICSonja, I'm so sorry you got the stomach pains. That's definitely a possible side effect :(

I hope that your body adjusts soon....whatever you do, never take the med on an empty stomach, make sure you eat a full meal and THEN take it immediately - that will give you a cushion with which to process the medicine.

I'm sorry you had the bad side effects...hopefully you will get some bladder relief soon and the bad side effects will go away.

Blessings,
Lori
P.S. Coming up on two months of remission now, pretty cool! :)

[akrose]

Hi - today is day 3 on cytotec, and no GI symptoms, but still some urinary frequency and burning, just being patient and waiting it out. are you having the same symptoms, sonya.
see ya, akrose

[ICLori]

Hi, Akrose, I'm sorry it hasn't helped you yet. Would you say your urinary frequency and burning is worse since beginning the Cytotec, or just that it's the same (not any better?)

Just curious. I know Dianne had worse bladder pain from just one pill...so it's possible to get worse on this, judging by that...

Blessings,
Lori

[Butternut]

No problems. Feeling fine.
Ate two pieces of pizza with salad last Sunday after church and today did the same.
So thankful.

[ICLori]

Hi, Butternut, so glad it's continuing to work well for you! Pizza is often flare-food because of the tomato sauce, so I'd say that's a good sign that you can tolerate that with no bladder pain!

Akrose, I hope so much that this med makes you better within a month or two...I just don't have a good feel for what percentage of ICer's this med could help. I'm frustrated that there is only that one small study. I guess we are kind of on our own with this for now. Please don't give up hope though if this doesn't work for you - there are other treatments like Cyclosporine-A that seem hopeful, plus it might be something related to PFD which could be treated through physical therapy, etc. - never give up hope!

Blessings,
Lori

[Ratchada]

Lori-Am following this thread with great interest but would like to know if you been diagnosed with Hunner's ulcers. Thanks, Ratchada

[ICLori]

Hi, Ratchada, I have not been diagnosed with Hunner's ulcers. The original study did not specify if the IC'ers studied had Hunner's ulcers, but they were described as having severe IC that was refractory to other treatments, so I'm guessing there easily could have been someone with Hunner's ulcers in that group. As far as I'm aware, this treatment would be equally effective for both groups of IC'ers.

Blessings,
Lori

[andcohen]

Lori,
Thanks so much for your info. on this, I will be taking this to my new DR. in March. I hope she will consider this as an option for me. I am at the stage I just want this bladder ripped out :headbang: But mabey this can help?
Cheers Andrea :grouphug:

[ICLori]

Hi, Andrea!

Well, I wouldn't advise this treatment if there are any other, more traditional treatments that could keep your symptoms under control. And I wouldn't advise this for any ladies of child-bearing age who are not willing to take extra care in avoiding pregnancy.

But if nothing else has worked, you can't live with the symptoms, and you are ready to have your bladder removed - and if you are willing to do everything possible to ensure pregnancy does not happen while you are using this medicine - then this medicine is probably worth a try.

At least, that's the way I think about it - I figure it's best to try any medicine that has a reasonable chance of working, before going to bladder removal.

I am worried though that I may be getting people's hopes up too high. I just don't know how accurate that study is that we all saw. I mean, I do believe the study was done carefully and that no one lied about their results or anything. I just don't know though how a larger study would turn out. Would a larger study show that a majority of IC'ers are helped by Cytotec? I just don't know.

But if a person has reached the point where there's nothing left to try but bladder removal - then I think for sure it would be reasonable to look at the more experimental treatments such as Cytotec or Cyclosporine-A.

If you do try Cytotec, or even Cyclosporine-A, I wish you the best of luck and hope that you go into remission, and don't have bad side effects!

I'm so grateful too for everyone who has posted about their results. The more we know, the better off we are as a community I think!

Blessings,
Lori

[violet]

HI, THIS IS VIOLET. i AM ON MY 2 ND DAY ON MISOPROSTOL.sO FAR SO GOOD i DON`T FEEL TO BAD ALITTLE NAUSEAS, i TRY TO IGNORE IT. i STILL FEEL SOME PAIN TODAY i HAD TO TAKE A PAIN PILL AND ALSO TO GET SOME SLEEP I TAKE ONE. mY DOC. TOLD ME TO USE bACITRACIN ZINC OINTMENT AND a AND D ointment for the burning on my urethra. It does help and they are over the counter med. I will keep posting letting everyone know if it works for me.

[akrose]

Hi to IC Lori, Violet, Butternut, Sonja

I think it is working - today I walked around an entire outlet mall- it is cold here in virginia- but I did that same walk back in June 2005 and felt like crying. today I was buying shoes, no crying, minimal discomfort- just about 3 bathroom brakes in 2 hrs. So, Cytotec is making a difference in me, and I can already see it. Can't wait to drink that lemonade, oh and then french fries from macdonalds and a medium sized coke. But you know what the greatest thing would be-to work on my floor at the hospital for 8-9hrs without any urethral burning. That would be a treat. But am quitting that job in march, because I would be working too many w/e, with my home health job. The next best thing would be to meet another person -in person-- who is going through - the pain i experienced in april, may, june and really help that person- I am praying that God will allow that to happen for me. I am so glad to be your friend- all of you. The other thing I am praying about is the nice gentleman I met in St. Louis- where my brother's family lives- who wants me so much to move there- well, the first thing I have to find- before a job or home is a urologist- like the one i found (after 5-6 other docs) here in Virginia. So lots to leave in the great big hands of God. Love to you all, aileen

[ICLori]

Hi, Violet, I'm glad the side effects aren't too horrible, I hope that you get through the first couple of weeks without too much discomfort. It may take several months to get the full effect of this medicine on your bladder - I remember one lady posted she was about 70% better after two months on the med, and Norm's wife was in remission after nine months on the med. So apparently it generally isn't something that happens all that quickly.

Do you feel any better at all, or do you have about the same level of pain as before? Maybe it's too early to be asking, LOL! Anyway, good luck to you!

Hi, Aileen, I'm glad that it seems to be helping a little bit, I just hope you can get through the first 2-3 weeks without too many bad side effects! Probably after a couple of months on the Cytotec you will be able to tell for sure if it's helping or not. Best of luck to you, and I hope everything works out great for you with the gentleman from St. Louis! :)

Thank you both for letting us know how it's going! This is like a big experiment, LOL. I only hope that the experiment will have more happy endings than sad endings.

Blessings,
Lori

[icsonja]

Hi all, Its Sonja checking in to let you all know how the cytotek is going.
This is day three for me and I have decided due to having bad stomach pains right after the first dose to really take it slow and build up to a theraputic dosaege gradually.
I did take the second, and all doses since with a glass of milk and a RX muscle relaxant, it helped with the stomach pains about 90%. No nasuea, or diahrrea so far, just some rumbly-grumblies.
I dont think I am at a high enough level yet to say if it helping my IC symptoms, but I am going to try a forbidden food by the end of this week, when I should be at the Doctors reccommende dosage.
My DR'd have me working up to 100 mg 4x day, which is lower I think than yours Lori? We are going to reasess the dosage in 4 weeks to see idf I need to go up.
But since I had a disappionting start (I thought if I had so much pain from dose one, that I would never last thru), but I am working around , and rying new ways to ease the symptoms and so far it is helping, so I am NOT going to give up without a fight.
And Lori don't worry even if this doesnt work for me I will always be grateful to you for showing me this opportunity. That is what a support group (and friend) is all about.
And I have learned the hard way not to see each new thing as the magic bullet. so rest easy my friend, you have done a good thing. Thank you from the bottom of my bladder.
Sonja

[Oxana]

Sonja!

You are doing everything right. I hope and pray it will be easy for you and you could be symptoms free soon. :grouphug:

[ICLori]

Hi, Sonja, thanks for letting us know how you are doing, I'm glad the stomach pain isn't as bad now! I was curious, did you take the first dose on an empty stomach by any chance?

I'm so glad you are going into this cautiously, both because of the side effects and also because of the possibility it won't work. I don't want to see you hurt in any way because of this!

But I'm like you, I wanted to try every single medicine out there, no matter how wild and crazy, that had any chance of working.

I'm on 200mg 3 times per day right now and it's still working really well for me....still in remission. No gastro symptoms either. My body just seems to like this stuff, I guess.

It really is so smart to start at a low dose and then work up - but you are right, it might not be effective (who knows?) until you reach a certain doseage level. This is almost like a big experiment, really. I wish we had more than that one little study to guide us.

I'm really keeping my fingers crossed for you and all others trying this medicine, I hope so much that it helps lots of people, without the side effects being too intolerable.

I was really worried about how bad the side effects could be when I read about patients in the original study dropping out - they were patients just like us, severe IC that no other medicine or treatment worked for. So you know they were going through just torture from their bladders. I figure, for them to drop out of this study because of gastro symptoms - they had to be in incredible pain or something, because all of us, we'd go through so much to just get some relief for our bladders. So for them to drop out, meant those side effects had to be horrific.

I'm just so glad that with the milk and muscle relaxant pill, you got the side effects down to a more tolerable level.

Keeping my fingers crossed!

Blessings,
Lori

[WendyL]

I know it has been awhile but I just found this post and wondered if you are still in remission. I want to try the cystotec but I don't know where to find the info for my Dr. He will want to know how much, how often. If you could tell me how much you take or lead me to an article on the net I would appreciate it.

WendyLynn

[Cheries]

Where is the information about the study that I can take to my doctor. Thanks so much. I am going tomorrow and want to take some information.

[ICLori]

Hi, Wendy and Cheries, I am still in remission and doing very well on Cytotec, thanks! I am taking 3 200mg tablets per day, spaced roughly 6-8 hours apart, with meals.
My doctor decided on that dose because it was the dose used in the study I took for him to read (abstract below.)

Here's an abstract of the study to take to the doctor - he or she should be able to get the full article or look it up if they have professional subscriptions to the various urology journals. The abstract alone was enough to convince my doctor to let me try Cytotec (since nothing else had worked for me and we were looking at bladder removal, we didn't have much to lose...)

@@@@@@@@@@@@@@@@@@@@@
Clinical Response to an Oral Prostaglandin Analogue in Patients with Interstitial Cystitis
J.D. Kelly, M.R.A. Young, S.R. Johnston, P.F. Keane
Department of Urology, Belfast City Hospital, Belfast, Northern Ireland
European Urology 1998;34:53-56 (DOI: 10.1159/000019679)

Objective: To assess the efficacy of the oral prostaglandin analogue misoprostol in controlling the symptoms of interstitial cystitis in patients with refractory disease.

Methods: Twenty-five patients were commenced on misoprostol 600 µg daily for 3 months. Patients who responded to therapy were offered treatment for a further 6 months. Assessment of the response was by a voiding log and an interstitial cystitis symptom score.

Results: At 3 months, 14 patients (56%) had significantly improved, and after a further 6 months, 12 patients (48%) had a sustained response. The incidence of adverse drug effects was 64%. Most side effects were minimal, and the response rate in patients who were able to tolerate the drug was 87% at 3 months and 75% at 9 months.

Conclusions: The oral prostaglandin analogue misoprostol is effective in treating the symptoms of interstitial cystitis. It is possible that prostaglandins have a cytoprotective action in the urinary bladder.

@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
Best of luck to both of you, if you do try it, I hope it works well for you without debilitating side effects.

Blessings,
Lori

[akrose]

Doing ok, from the cytotec, no gi symptoms for me, always take it after i eat something like a complex carbohydrate- cereal, yogurt (blueberry of course), cookie. GI wise- perfectly fine. The urethral, bladder - good moments, but sometimes, when work gets pretty stressful I have some burning, so just like every other med I have tried I need to hang in there on this one, and give it time. --just like you predicted Lori- it make take each of us a different amount of time to kick in. thanks for telling us about it lori, you have done a great thing.

[violet]

Hi, this is day and all is still. Today I had nausea inthe morning so I ate popcorn all morning. After lunch I had my second pill and I didn`t get sick at all. My dinner pill went down without any gastro symptoms either. So I hope my body is used to it now. My bladder was much better today. I didn`t hurt enough to take a lortab. Last night I had problems though I had to go to the bathroom every hour. So I didn`t get much sleep. But I did drink a diet cola so today I though them away. I hope My bladder lets me sleep tonight. But I really think it is helping me. Thank you so much. I will keep posting. Violet

[Butternut]

All is well here too. I did notice yesterday that after walking through stores for a couple hours that I had kind of an achiness in the lower abdomen and back but not as bad as it's been in the past year.
I have decided to further protect my bladder by continuing pretty much on a lower acid diet with occasional trials. I want the bladder to continue healing and not just use the Cytotec as a bandaid. I hope for real healing and maybe someday I won't even need the Cytotec anymore!!!
I am glad to see others trying Cytotec. It has been well worth it, for me.

[ICLori]

Hi, Aileen, I'm sorry it hasn't kicked in for you yet - I'd give it a good 2-3 months before I'd give up - maybe longer if you have the patience to keep trying. I'm not sure why some of us seem to be responding sooner than that, but I know that Norm's wife and that lady from New Orleans, took several months before they could say they were substantially better, it almost seems like there is a cumulative effect (like Elmiron in a way.) I'm glad though that you haven't had any real bad gastro side effects, that's good! I'm sure looking forward to the day (maybe in a month or two?) when you can post, "I think this is helping me, I have fewer bad moments than I used to..."

@@@@@@@@@@@@@@
Hi, Violet, I'm sorry you had the nausea but it does sound like your body is starting to adjust a bit to it, hopefully you won't have too much nausea from now on. Great idea to eat popcorn, keeping something dry in your stomach - that always works great for me for nausea (I eat crackers usually.)

Boy I'm excited for you that your bladder is a bit better. It's still really early though, so I would expect that the longer you are on this, the better your bladder will be. But I'm very happy for you that you've noticed an improvement already. I'm sorry that your bladder still couldn't tolerate a diet coke though - probably just too early in the process, maybe you can try again after you've been taking this several months. But I'm glad that you notice a difference - that's a good sign, and I hope that it means you are going in the right direction and your bladder will slowly get more and more comfortable as the months go by on this medicine! If your symptoms have always been worst at night, you might still need your Lortab for another few months - I remember that one lady who used narcotics 24/7 saying that after two months, she was about 70% better and she was going to go off the 24/7 regimen and just use the pain meds as needed. So I am hoping that after another 2-3 months, you might only rarely need the Lortab instead of every night.

@@@@@@@@@@@@@@@
Hi, Butternut, I'm sorry you got some achiness again - sounds like the Cytotec is helping you but just not 100% yet - I wonder what percentage you would say you are better by...would you say you've seen maybe a 50% improvement in symptoms or reduction in the amount of time you are uncomfortable? Even a 50% improvement this early in the game would be pretty good...hopefully after two months, you'd be 70% better like that one woman from New Orleans, then maybe full remission after 9 months like Norm's wife? Just trying to predict the future, LOL. It sounds like a good idea not to push your bladder too hard just yet - maybe after about 6 months to a year on this, you can try the acid foods/drinks again.

I'm pretty sure this medicine won't cure IC - there is no medicine right now that cures IC - so whatever medicine works for you, works simply by masking the symptoms or causing a temporary lining of some sort to be built. I think Elmiron works by restoring the GAG layer, and this stuff seems to work by restoring some of the mucous layer (both layers are damaged in IC, from what I have been reading.) So with both drugs, once it helps you, you have to remain on them for life - or until a cure for IC is discovered - because the temporary lining that they build, will go away once you discontinue them.

There are a lot of diseases where you have to keep taking the meds - diabetes is a good example of another incurable disease like IC where you have to take the medicine forever. It would be nice to just be able to take a short course of medicine and then be healed forever from this but everything I know about this so far says it's incurable.

Blessings, Lori
P.S. Thank you so much everyone for checking in, I appreciate it so much and I know lots of people are really eager to hear about the results of everyone trying this medicine!

[dawnmarieR]

Ok I Have A Question? I Was In Last Week Having A Hydro/cysto/biopsy Done, And I Asked The Nurse There If She Ever Heard Of This Drug And She Said No. I Go Back To My Docter Next Week For A Check. Last Time I Saw Him He Was Talking Interstim. I Am Like Wahtever Get Me Better. How Did You Sonja Ask Your Docter About This Drug. I Am Hearing So Much About This Elmiron. H Ow It Is Not Working I Have Been On It For Almost Four Months Nothing............so You Lori And Sonja Give Hope. But How Do The Rest Of Us Get Our Docters To Say Ok?

[ICLori]

Hi, Dawnmarie, I would give the Elmiron at least a few more months before you give up on it - sometimes it takes longer than 6 months for it to kick in. I have heard of it taking 9 months or longer before it works. So please give it more time, because Elmiron is much less risky for women of childbearing age, than Cytotec is.

In fact, at least for stomach ulcers (what it's normally prescribed for), Cytotec is not recommended for any women who could become pregnant. So you can see that if you have a uterus and it's still capable of bearing a pregnancy, you will have an extremely hard time finding a doctor to let you try this drug.

This study (see the posts above for the abstract of the study to show your doctor) was published in the European Urology journal. Many uros and doctors don't keep up as well with their own native urology publications and journals as they should (they don't always read every article, for instance, and most have ignored IC for years and years because it was considered so extremely rare, they probably never expected to encounter an IC patient in their lifetimes) and I would imagine most U.S. doctors NEVER read the European Urology journal. Which is a shame because it seems alot of the great research on IC (Cyclosporine-A treatment, Cytotec treatment) gets done and published in Europe rather than the U.S.

So anyway these doctors have never heard of this because they've only had the most basic education about IC (whatever they learned in med school, like, IC is just an hysterical disease and don't give them pain pills.) If you are lucky, they might have seen the recent studies about Elmiron and Atarax not living up to expected results. Maybe. Otherwise, they are just going by what they learned in med school or shortly after - DMSO, Elmiron, Atarax, Elavil, hydrodistention. That's it. And you are absolutely right, some recent studies on all of those (except Elavil) seemed to say that these drugs or procedures were not as efficacious as once believed. Although that's a touchy subject on here - there are many who believe these studies are wrong, especially if they themselves have benefited from one of the drugs or procedures shown in a bad light by recent studies. So you can choose to believe the studies or not.

But anyway, if you give Elmiron another few months and it still does nothing for you, and you've tried every other last IC drug and procedure, and if you bring in the study abstract (again, see previous posts for the study, I think it's on this page or the page before) to your doctor, you might get lucky and your doc might let you try it. But maybe not. Took me two years and five docs before I found one to let me try it. My big fear now is that I will move and another doc will see me as a walking baby incubator even at my age (44) and will say "No more cytotec for you, what if you should fall pregnant?" I asked my doctor about that - even asked if I should have my tubes tied to prevent a doc from taking this med away from me - but he said no reasonable doc would take this away from me now that I have shown it is working and since I am also on BC pills and using another backup method.

Anyway, you probably have a tough journey ahead of you trying to convince a doc to let you try this. The best thing you can do is bring in the study. They don't care about this lady or that lady on a message board - all docs care about is those published studies done in Urology journals. Bring one of those in, they might just listen.

Blessings and good luck to you,
Lori

P.S. Here's the study again so you don't have to go find it: Print this out and show it to your doctor. A nurse will for sure never have heard of that treatment, but don't let that bother you - how many nurses do you know who have even heard of IC? I know lots of nurses who have never heard of it. Doesn't mean IC doesn't exist. Same with this medicine - just because a doc or nurse hasn't read the study, doesn't mean the drug that the study examined is worthless.

@@@@@@@@@@@@@@@@@@@@@
Clinical Response to an Oral Prostaglandin Analogue in Patients with Interstitial Cystitis

J.D. Kelly, M.R.A. Young, S.R. Johnston, P.F. Keane
Department of Urology, Belfast City Hospital, Belfast, Northern Ireland
European Urology 1998;34:53-56 (DOI: 10.1159/000019679)

Objective: To assess the efficacy of the oral prostaglandin analogue misoprostol in controlling the symptoms of interstitial cystitis in patients with refractory disease.

Methods: Twenty-five patients were commenced on misoprostol 600 µg daily for 3 months. Patients who responded to therapy were offered treatment for a further 6 months. Assessment of the response was by a voiding log and an interstitial cystitis symptom score.

Results: At 3 months, 14 patients (56%) had significantly improved, and after a further 6 months, 12 patients (48%) had a sustained response. The incidence of adverse drug effects was 64%. Most side effects were minimal, and the response rate in patients who were able to tolerate the drug was 87% at 3 months and 75% at 9 months.

Conclusions: The oral prostaglandin analogue misoprostol is effective in treating the symptoms of interstitial cystitis. It is possible that prostaglandins have a cytoprotective action in the urinary bladder.

@@@@@@@@@@@@@@@@@@@@@@@@@@@@@

[icsonja]

Hi to all, and I am hoping all who are trying cytotek are doing well and those many out there who are following us as we wade our way thru this new treatment are encouraged by how everyone is doing so far.
Today I went up to the scheduled dogage, I take them with milk and a muscle relaxant still, and I plan to see if I can stop the muscle relaxant, or if I still need it to keep the stomach pains tolerable.
So I think, that I am noticing today I slight change in my bladder, I told my hubby it feels much like it does the same day I do an instill afterwards, so I am hopeful, but who knoww I may just be wanting to feel it wor that it is my imagination.
So I did a little experiment, I ate a tablespoon or so of salsa, and I will know by this evening if it is helping or I am just wishing it into working. After all it is only day 4 and I am in this for the long haul.
Lori what you said about the study women stopping due to side effects I found very interesting, you are so right, I wouldn't stop any treatment that I though was helping my IC unless I thought it might kill me (like interstim, I kept that for 11 months,which was 10 too long) so I am curiuos about why they stopped too.
Also for the post about how I got my DR to prescribe cytotek for me....
First and most important is this woman (my uro nurse practioneer) KNOWS me and I know her and we trust each others judgement. That is vital and my thanks go out to Micki Autry NP who has helped me try to find a life with IC. Second, is the fact I had done as much research as I could before I spoke to her and I had facts and dosages and side effects, ets ready to talk about.
Third I have had a hysterectomy, which cancels out the worry about pregnancy and this med. And it is an important consideration for a pateint and DR , after all cytotek is half of the duo of drugs used to cause abortion, so it has to be used with extreme care in a woman able to get pregnant or who is nursing. My NP would NOT of let me use cytotek if I was still able to get pregnant. Only post menopausal women(natural or hysterectomy) or a women who had a tubal ligation were the ones that the practice of Urologists where I go decided could try this med, it is just too much of a risk for the women and for them too.

PS : Lori, do you think we should be keeping some sort of record of our very unscientific trial here? If you think we should I will help you uot, or vice versa. Who knows maybe it would help others, and get some recognition by researchers, DR's if we got enough data? Let me know .
Wishing you all a better day than yesterday and a peaceful night,
Sonja

[ICLori]

Hi, ICSonja! I'm so excited that maybe the med is helping you slightly...I'm sitting here saying to myself, "Please, God, let it work, let it work, no bad side effects either..."

I wish so much this worked for every IC patient and also didn't have bad side effects for anyone.

I'm just so sorry that it is so dangerous for women who might become pregnant. My doctor was really understanding about things and allowed me to use it because I was on the pill and also willing to use a 2nd, backup method, and he felt that given that, and my age (44) that it was very unlikely I would become pregnant. I also assured him that if I had any reason to believe I had become pregnant, I would stop the Cytotec immediately and come see him. But generally, this medicine will be extremely hard for any woman of childbearing age/potential to get because of the risks. That makes me really sad because I think it might be an effective drug for IC.

I'm glad the side effects aren't too bad anymore for you, and that the combo of the milk and muscle relaxant is working. Please let us know if you end up not needing the muscle relaxant anymore - I'm thinking hopefully your body will adjust to the Cytotec so that it won't react so violently anymore to it.

You know I was thinking too about the study and the dropouts..you know when they did the study, the people signing up for it probably didn't really know if it was going to help them or not. Maybe they didn't have much hope, especially if other things didn't work for them before. So maybe when the bad side effects showed up, some of them said, "you know, none of these meds ever work for my IC anyway, and here I am with stomach pain or diarrhea...why bother taking this?" Maybe that's what happened? I don't know.

I was thinking of just keeping a running tally of the numbers of women who tried this medicine, and the number who dropped out due to bad side effects, then the number who were helped. Just to let my doctor know the general numbers without involving any names or specific details (to protect privacy.) You know, something like, "of the five who tried this, 2 dropped out due to side effects, 2 were helped, one did not appear to be helped..." Something like that. Only of course I am hoping that everyone who can tolerate the medicine will be helped. Do you think that might be okay? I figured as long as I didn't give any details or names or anything, that there wouldn't be any privacy issues, and I thought - this is something my doc has never tried before on an IC patient, perhaps he would like to know how it's worked or not worked for some other IC'ers.

Of course, if our doctors really wanted to, I'd imagine they could register and come read our posts. I know we've had doctors who have come here before.

I am hoping though that if our little unscientific experiment here turns out to have more successes than failures, that the word will get out somehow to doctors so that they may help a few more IC'ers who have failed previous treatments and who are not in a risk category to try this medicine.

I'm just so excited that maybe it is helping you just a tiny bit already! Oh gosh I'm worried about the salsa though - it might not be protecting you enough just yet to handle that...

Blessings,
Lori

[violet]

Hi this is violet on day 4 Ididn`t have much gastro problems today just mainly in the morning.So I ate popcorn again. I did take ulram today my bludder was hurting and I am so afried of the pain that I took a pill. Lori at what times in the day do you take your misopostol. I take mine about every 4 hr. Can I space them more.I take them with my meals. I am not eating any acid foods yet I think its to early. How many days was it when you really started feeling good. I know I am different but I just wondered. Hang in their everyone Sonja you and I are on the same day on the medicine. We are both doing wellit looks like. Does anyone know which soda pop is easiest on the bladder I sure miss my diet coke. Talk to you tomorrow.

[Butternut]

Diet A&W Rootbeer over ice and I sometimes put Coffee Tamer in it.

[violet]

Butternut, thank you for ansering. But what is coffee tamer and what does it do and where can I get some.

[Butternut]

I think you can order it on this site. Not sure. I don't remember where I ordered mine from. Sorry.

Coffee Tamer is to reduce the acid in drinks or food.

[ICLori]

Hi, Violet, I'm sorry you had some bladder pain today. I'm having a hard time telling from your posts if you are getting any benefit yet from the Cytotec or not? Would you say you have any improvement or none at all?

Please don't feel bad for using your pain meds, that's what they are there for! This medicine might not start to be really effective for a few months - and we don't know for sure if it will even work for everyone who takes it - in fact it most likely won't work for everyone - so might as well be comfortable! Maybe in a few months you'll find you don't have bladder pain anymore. That's what I'm hoping for anyways!

Sorry to be nosy, just trying to keep track of whether or not this is helping people...

Butternut, are you still doing pretty well? I hope so!

Blessings,
Lori
P.S. As far as sodas go, all diet sodas used to kill my bladder worse than any regular soda. My bladder just could not handle any artificial sweetener. Even now I won't touch artificial sweeteners - don't know if my bladder could handle it or not - I know I have no problem drinking regular Coke at this point, or lemonade or limeade or orange juice.

P.P.S. I think feeling a big difference right away probably isn't the norm with this drug - I figure the norm is probably more like that one lady who said that after two months, she was about 70% better...but we will see, as time goes by - I hope so much this medicine makes a positive difference for everyone who takes it.

[icsonja]

HI all Sonja here on day 5,me and Violet are on the same day, that is neat, it is intrresing to see how we each differ in the use of cytotek, since we are neck and neck, or bladder to bladder, may be more apt..lol.
I am having a really bad day, but not due to the cytotek, it seems to be about the same as thepast couple of days, I know I cannot let my stomach get empty, or boy do I get stomach spasms. But no neasua or the other end , so thats good.
One thing I noticed and I am guessing it is cytotek related, my hair seems to be coming out , like when I took elmiron, but since it is only day 5, maybe I am just imagining symtoms, because I am afraid to get my hopes up (again)
As for my bad day, I fell down this morning (again) since I had the interstim removed I have had episodes where my leg just gives out and down I go, this time it felt like it was my lower back that gave way, and I fell hard and had to crawl over to the fence to pull myself up. I am in ALOT of pain, and I amscared, I think that I may have nerve damage, so please remember me in your thoughts, I really am afraid of what is going to happen to me.
Sorry to be a downer, but this is scary.
Sonja

[davidr]

I never knew how many of you were gonig through this terrible pain until I met akrose from Virginia. I am praying for all of you. akrose is right, I want her to move to St. Louis so I can help her through this terrible situation. I can't wait to biggie size her McDonalds fries.
DavidR

[ICLori]

Hi, ICSonja, I'm so sorry about the fall and the possible nerve damage - that's horrible! I don't blame you at all for being scared, is there a neurologist or someone like that that could test you and hopefully help you? That could be such a dangerous situation, you could fall and break your neck!

Gosh. I'm glad that the gastro symptoms are still manageable - hopefully within another two weeks you will get back to normal that way...and hopefully soon you will start feeling some relief from the IC symptoms, too...

The hair falling out isn't a listed side effect of this medicine, but any side effect is possible really with any medicine...good to keep an eye on it...

I hope you feel better and I hope that your nerves repair themselves quickly (maybe they are just kind of irritated from the surgery?) and that you feel better soon...

Blessings,
Lori

[Oxana]

I feel so sorry for you, Sonja, too. I hope you will feel better soon and Cytotec will help you. I think it should and will. My best friend tells me all the time that everything can happen if belive in it very much.
And, please be careful. :kissing:

[dawnmarieR]

Ok I Have To Ask How Come You Had The Interstim Removed? Have You Tried The Tens Unit? I Have A Had A Falre Up For A Week, And I A Lot Of Pain. I Had Hydro And Stuff Last Week, Then Monday A Uti While On Macrobid. I Called The Docter Today He Says Rest And Pain Reliever......what A Joke, I Guess I Have An Appt Next Friday, But I Amy Go See Him On This Friday..........boy Is He Gonna Get A Lot Of Questions./

[KarenIC]

Hi Sona,

I'm so sorry to hear about your fall. Maybe, if there is nerve damage from the Interstim, it is only temporary. I'm praying that it will resolve itself over time and the nerves will get back to normal. Please be careful and have this evaluated by your doctor as soon as possible.

I wish you all the best with Cytotec. Hang in there. I know this can be very scary, but please know that we are all here for you to lend you whatever support you need.

I'm always here for you.
Please take care and you're in my thoughts.


Love,

KarenIC

[violet]

Hi all. I don`t think the cytoter is helping me yet. But I know it is only day six. I had to take two lortabs today and it took a long time to calm the pain. AS for the gastro symptoms they are almost all gone. Now if just my bladder would respond. The problem is my doc. wants me to stop taking narcotic pills. But the ulram just does nothing for my pain. Oh well I still hava alot of pills so I hope I will feel better and not need the pills. I`m sorry sonja , thats all you need is another pproblem besides IC.

[ICLori]

Hi, Violet, I'm sorry the Cytotec isn't helping you yet. I do hope so much that it might help you in time (in a few months) but I know that at least with the study, it didn't help something like 25% of the patients. So, I know it won't help everyone who tries it....

But at least the side effects now aren't so bad, I'm glad for that at least....still keeping my fingers crossed for you, because it's too early to say for sure one way or another yet...

Blessings, Lori

[ICLori]

Hi, Sonja, I sure am hoping you are feeling better today and that your nerves are healing up from the surgery, and that you aren't falling anymore or anything.

I was thinking about your hair falling out - I looked far and wide on the internet for that being a potential side effect of Cytotec and I just couldn't find it - doesn't mean it couldn't happen to you, just that it's not one of the side effects reported by others - and I was thinking, maybe it was from the surgery about a month ago.

I've often heard (and noticed in myself) that after a surgery or a big event like that (childbirth, etc.) there is hair loss, because of the shock to the body. Since you had surgery about a month ago, I wonder if the hair loss could be related to that?

Anyway, hope you are doing better, hope the gastro symptoms aren't bad and I hope the Cytotec is helping some. And I hope so much that your nerve damage heals up quickly!

Blessings,
Lori

[ICLori]

Hi, Butternut, hope the Cytotec is still helping you some!

Blessings,
Lori

[icsonja]

Just a note, it is Sonja here and I posted on the interstim failures board about my back, it turns out I have to have back surgery due to twoherniated discs and spina bifida which they founf on CAT scan last night. I dont know how much of this involves interstim, but I never had back trouble before. I have to go see a neurosurgeon asap.
I am scared and so is my family, please keep us in your thoughts.
I just keep asking myself "why me? why another thing, don't I have enough yet?"
Sorry for being so down, but honestly I am very down.
Sonja

[ICLori]

Oh, Sonja, I'm so sorry, how terrible! I will keep you in my prayers and I hope so much that they can fix this for you and that you will be as good as new after the surgery.


(((HUGS))) I'm so sorry. Like you, I wonder if it had anything to do with the Interstim removal? Well, the best thing to do is just to go get this over with, and I hope and pray they will be able to stop the pain and also stop the falling down and everything.

I'll be coming to the message boards frequently hoping to hear you are okay and came through the surgery just fine.

Blessings,
Lori

[Butternut]

Hi all. I am doing pretty good but had slight burning last night at work, after waiting six hours to void. My fault. I need to put my bladder as a priority, even at work.
I started on Byetta injections today for blood sugar control. I hope it doesn't interfere with all this progress. Do you know anyone on Byetta? It is not an insulin.

[violet]

butternut, How long were you on cytoter before it started helping you? And Lori how about you? Today I had a very bad morning I had pain all night and in the morning I had such terrible pain that I cried. I then took my Lortabs. That helped, so far today I have had 3 Lortabs. The problem is my doc. wants me to stop taking them and take only ulram. They don`t help at all. What do you take for pain or used to take? Talk to you tomorrow. And yes my gastro symptoms are still pretty miner.

[Butternut]

Violet I am so sorry about the pain. I took lots of Advil, Pyridium or Cystex and that is why my stomach was all tore up. The Cytotec is helping sooo much with all that. The first day that I began Cytotec, I began feeling better but I still must mention that I was feeling pretty good at that time anyway. What I eat or drink affects how I feel EVERY DAY. I have to keep flooding myself with water. Once in a while now, I get a twinge of what could return. I hope it never does but I can tell that I am still in the process of healing. Inside, I am sure that it is going to take awhile. I'm sure that with all the different degrees that people are affected by this painful disease, that healing can occur in different stages and time periods. At this point, I know in my heart that if I don't continue to be very watchful over the type of foods and drinks that I could go back the other way again. This, I feel, is not an instant cure-all, but it may help to begin the healing. I would imagine that it took years to cause this problem, now it may take a long while to make better.
For me, each day is different. This is what I remind myself of. If I have pain today, tomorrow may be better! We have to hold onto something. And thank goodness, we are here for each other.
Violet, I sure hope tomorrow is better. Take care.

[ICLori]

Hi, Violet, for me, I felt a big difference starting from day one and by about the end of the first week I felt I was in remission. I'm not sure why I responded so well and so quickly...I've been thinking that over.

I know my eye doctor and dentist both believe I may have Sjogrens. Now, Sjogrens sometimes also gives people pretty severe IC. It just all involves everything being "dried out" so to speak. The eyes, the mouth, maybe the bladder. And this Cytotec seems to make things juicier, at least as far as the stomach and bladder are concerned. It stimulates the pumps to produce more mucous. If my main problem was this lack of mucous, because of Sjogrens, then it would make sense that a med like this would help me. But if someone else already has a pretty good mucous but bad bladder lining under the mucous, then stimulating the mucous even more might not do much.

And sometimes people can also get increased bladder pain - Dianne did, she had bad bladder symptoms just from one pill.

So it might be worth it to see if you are better, or worse, with a voiding diary, if you take this.

I'm so sorry it doesn't seem to be working for you - I am still hoping that maybe in time it might work better for you.

I used to take Ultram and surprisingly it worked very well for me.

Blessings,
Lori
P.S. Butternut, I agree with you, I think that for most people at least, the healing is a process - that it probably takes months or even up to a year to really feel healed. I know those other posts I read - one lady was 70% better after two months on the meds, and Norm's wife took 9 months before she felt she was in remission.

I'm so glad though that this seems to be helping you at least somewhat.

[Franny]

Just to let you know Lori I check the internet daily to see your progress with misoprostal.

[ICLori]

Hi, Franny...wow. Well, so far I am doing very well on the Cytotec...I do still get up to urinate a couple three times in the night but I think it has more to do with my small bladder (all scarred due to the long years of this disease) rather than my bladder being in an active stage of disease...but I don't know. I am going to keep track of it and see if maybe the longer I take Cytotec, the closer I get to voiding only once per night (my ideal.) Maybe that's not realistic for me, my bladder is only 1/3 the size of normal now due to all the scarring.

Anyway, I'm hoping this drug might help some others...looks like some haven't been helped at all, some have been helped some but not complete remission yet, a couple had bad reactions...kind of a mixed bag so far. But I'm still keeping my fingers crossed.

I'm guessing that the drug with the highest remission rate is still going to be Cyclosporine-A or drugs in that class...but they are kind of scary drugs, with the side effects/possible complications....so that's a bit daunting, to suggest to people they try that...but still...such a high remission rate...it's very tempting...

Blessings,
Lori

[Butternut]

Lori, your latest post reminded me that I mean't to mention that last night I slept through the night (6 hr.) without any bathroom trips. Usually I go at least twice in 6 hr.
I drove a lot today with a lot of walking/shopping. No problems.
So far, I LOVE CYTOTEC!!!
Thanks

[purpleviolet]

Iclori and Butternut (assuming you are getting better) Do you think getting better makes your bladder hold more or is it to early to tell? Thanks for all the posts. My reg doc,an internist, told me that if I go to the uro and she doesn't give it to me, then she will - all I need to do is call. But I'm going away next week (Hawaii!) so I don't want to be dealing with a stomache ache then. I am trying marshmellow root and it seems OK. I'm recovering from a pelvic exam.

[violet]

Hi, today I felt much better, I did take ulram 3 times today but the pain wasn`t as bad as yesterday and didn`t have to take Lortabs. One of you memtioned you drank lots of water, are we susposed to drink lots of water? So today I started to drink lots of water. I just hope I don`t get up more than usuallal tonight. I get up about 6 times at night. More if I don`t take any pain pills. Yes i have severe IC. But I have not given up I will continual to take cytoter for ever. It may help someday. I just may need more time because my bladder is so bad right now. This is day 8.Sonja how are you doing with your IC. I hope it is working for you so you will have one less pain. Talk to you all tomorrow.

[Butternut]

I drink lots of water to help make my urine more dilute, not so acidic. And our bodies run on water. The more good cool water I drink, the more water that I want. Pop is really bad for us and does not quinch our thirst like water.
But slowing down a little in the evenings might help slow down the bathroom trips at night too.

[ICLori]

Hi, Butternut, I'm so glad Cytotec is helping you! Hopefully it will help you more and more as time goes on.

Purpleviolet, my bladder holds more when it is less irritated, so this medicine is certainly helping me a great deal with that.

Violet, I hope so much that Cytotec begins working for you within a month or so. Especially with severe IC, it might take more time....I do remember that the one woman who was on narcotics 24/7 for the pain was only able to consider coming off narcotics when she had been on Cytotec for two months straight...so I'm guessing it might be a few more weeks before you really start feeling a difference, but I do hope that Cytotec helps you.

Blessings, and Sonja, you are still in my prayers, I hope the operation goes well and you will be back to normal soon.

Lori

[akrose]

hi everyone- today is a good day, no more vaginal cream- premarin. i think i'll ask the uro for a patch instead. anyway, a little nausea tonight, but today if i voided when my bladder was full (every 1.5-2 hrs), minimal pain or discomfort. so i think maybe it is working. saturday was 7 days for me of cytotec, and i stopped the atarax (as per dr. iclori), and i think you were right about that. i am going to keep taking the cytotec even with the nausea, because as you all know very well- nausea , even vomiting, is nothing compared to severe bladder/urethral burning, right!!!! wish we could all meet for a milkshake somewhere, aileen