Cytotek (misoprostol) put me in remission!

[ICLori]

Hi, Aileen, I'm so sorry about the nausea, but I do hope it will pass very quickly, and like you said, it's worth it if you get pretty good help with the bladder pain, especially if the gastro symptoms only last a week or so like the doctors say.

Gosh I am so excited that you can tell a bit of a difference already! And I'm glad that stopping the Atarax helped things too.

It would be the most wonderful thing in the world if everyone who tried this went into remission! Even if it only helped by 50% or so that would still be something good.

Thank you so much for letting me know how you are doing,
Blessings,
Lori

[Butternut]

Hey everyone! I have to say that I am surprised that there aren't more people trying Cytotec.

Yes, I would be interested in that milkshake!

[quiltz]

This might just become "THE" treatment for IC and ICLori will be famous and have lots of money and maybe take us ALL out for milkshakes!!
:woohoo:
Liz



Hey everyone! I have to say that I am surprised that there aren't more people trying Cytotec.

Yes, I would be interested in that milkshake!

[ICLori]

LOL! Well, I'm actually both glad and afraid at the same time everytime I hear someone is trying this drug.

Part of me is glad in that I have such high hopes that it might help them like it helped me and some others in the study done in Belfast.

But a big part of me is afraid. What if it doesn't help them, and they are disappointed? I know how hard it is to get your hopes up only to have them dashed. That has happened to me so many times I can't even count them. Also, what if they have really horrible side effects, like some already have had? That worries me. And finally, what if something really bad happens like someone becomes pregnant while on this, or something like that? I am always relieved if I learn that they are past menopause or have had a hysterectomy, because that worry is then out of my mind.

So I do have kind of mixed feelings about people trying this. And I hope that I did the right thing by describing my reaction to it and helping people find the study that was done so they can learn more and make a decision about whether or not to give this a try.

Mostly I'm really hoping that it can help people, and I'm hoping most of all it puts people into complete remission. I know it might take several months, like Norm's wife, and I know it might not happen for everyone or even anyone, but I am just really really hoping. And I keep saying to myself, even if it only helps like 50%, it's still better than nothing, probably.

But I think people are wise to kind of hold back for a time and let a few of us here try it first - the ones who have already tried everything and have nothing to lose really by experimenting. If it goes well, after a few months, maybe others can think about trying it too, if they are able/willing to avoid pregnancy and also to endure some bad temporary gastro side effects.

My feeling is mostly that this drug is worth trying if nothing else has worked - including natural remedies - and you are in great discomfort and on your way to bladder removal. At that point, this drug would seem like a reasonable thing to try.

Blessings,
Lori
P.S. If it really does help many ICers go into remission or at least get 70% better, then my prayers have been answered, and I will gladly buy a round of milkshakes, margaritas, sodas, orange juices, all the no-no things that you all have been missing through the years...we will eat all kinds of spicy foods together and all those bladder-unfriendly things, LOL! I'm very fortunate - enjoying limeade, lemonade, orange juice, Coca-Cola, spicy food, you name it. For some reason, this Cytotec stuff really does the trick for me.

[violet]

Hi, its violet reporting in.Today is day 9, I did feel better today. This morning I didn`t have any pain at all. In the afernoon I starting burning, so I took an ulram. That helped and it usually doen`t. Tonight I feel pretty good just alittle burning but much better than the days before. Maybe its starting to work. I have high hopes. We are planning a trip to Vegas next month and I really want to feed good and have a margarita and spicy mexican food. I will keep taking my med. How are you doing akrose? I am watching to see your progress. Let us know. We are all working together on this. It helps to have others trying this and know how they are doing. Talk to you tomorrow.

[teelag]

Just wanted to let you guys know that it is so nice to see some positive news on here...I keep checking this thread and am glad when I see things are going really well for some of you trying this. I sure hope it continues to help!

I definitely want to try this, but I am not sure if I can make a case for my uro to try this. I have had IC since 2003, but have only been on Elmiron, Elavil, and Urised for 7 months because I got pregnant (very planned) soon after dx. Even with these meds, I feel like things have gone downhill the last couple months, despite really hoping the Elmiron would "kick in" and upping Elavil to 50 mg. I use to just have occasional pain, now it's daily pain that's worsening and urgency is added. Antihistamines, Motrin, and Cystoprotek all made me flare hugely!! IC diet helps some.

I just don't know if he will go for trying this med, without going through trying all the instills available. Do you have to be a prior heavy NSAID user? Prior to IC the only drugs I ever used were Motrin during my period and the doozy...did a course of Accutane in my early 20s (definitely wonder if that drug did some early damage). We are definitely having no more children, and I am on the pill and very careful. I am in my late 30s now.

So are there any others out there trying this that aren't considered severe IC? I feel like I am moderate now, but seem to be worsening. I just want to feel normal again. :)

[Kara Isabel]

Hi everyone on this thread!!!

I've been following this thread very closely (lurking) My curiousity is definately peaked, and I am uber interested because I live near one of the doctors on this thread that is progressive enough to try this on one of you. ;)

My question is, I have endometriosis too....and I'm not sure if this would be an option for me. I'm 36, my husband has a vasectomy and I do NOT want any more children, I have 3 by birth and 4 stepchildren..so w/ 7 kids, I'm pretty well done in that department.

Accutane: there are quite a few of us on here that have been chatting and emailing about the PROBABILITY that this nasty toxic drug did some significant damage to us.....and I did take alot of NSAIDS because of the severe menstrual cramps, vioxx, naprosyn, motrin, etc. until Ultram came out and I switched to that.

Anyhow....now I just want to get better!!

Lori, I'm SOOO happy that this has put you in remission. I think that is just awesome.

I hope all of you that are taking Cytotek start feeling better real soon.

Margaritas and Mexican food?????? That is one of my fantasies as well! LOL

hugs all,
Kara

[ICLori]

Hi, Violet, I'm so glad to hear you might be getting slightly better, that's awesome! I'm keeping my fingers crossed for you to get better and better over time!

Teelag, I don't blame you for wanting to feel normal again. I'm not sure if a doctor would let you try this without first making sure you have tried every other standard IC treatment, including instills. But it never hurts to just ask, if you really want to try this. I would bring in a copy of that study with you (the abstract I mean) because that's the only hope I think of convincing a doctor it's worth trying.

Kara, I have endometriosis, too, and this medicine didn't do a thing to harm me that way. I strongly suspect that the person who had the endo flare-up, would have had an endo flare-up even without the Cytotec. Cytotec is not known to interact in any way (negatively or positively) with endometriosis. The reason the poster thought that it was hormonal (Cytotec) was because it is given to women to induce birth - it can stimulate muscle contractions of the uterus. Another effect it can have is to cause irregular menstrual bleeding. But it does those things not through hormones, but rather through the fact that it is a prostaglandin, and the effect of prostaglandins on the uterus is to make it contract. When the uterus contracts hard enough, either birth happens (in the case of pregnancy) or else a period happens. I'm not saying it's impossible that the Cytotec had some effect on her endometriosis, but I just don't see how - it's kind of like taking a TUMS and then saying, the TUMS made my endo act up. It's just not listed as one of the possible side effects. Sometimes things happen coincidentally when you take a medicine. That's why, under side effects of medicines like birth control pills, etc. you will see listed, as well as the side effects that are REALLY associated with the pill, side effects such as a cold or the flu. Does the pill cause those? No, not really. But if a user got a cold while on the initial trial for the pill, they have to include that among the side effects. Anyway, Cytotec has been used by so long by soooo many people, for stomach ulcers, for inducing labor, etc. It's never been known in all this time to have any effect one way or another on endometriosis.

I wish the best of luck to anyone who chooses to try this medicine, and I hope those already trying it continue to get better and better!

Blessings,
Lori

[teelag]

Lori,

A couple questions...do you take the brand-name Cytotec or the generic form? And you take 200 mcg 3 times daily now? Did you start slow and build up?

Just trying to get info to go into my doctor with and beg him to at least let me try it. Usually with meds, one pill will either be fine or will feel like I instilled acid and I'll have a whopper flare. I at least want to try it...I have an appt in 2 weeks.

Sure hope you are still doing great!

[ICLori]

Hi, Teelag - I honestly have no idea if it is the brand-name Cytotec or the generic form. My bottle just says "Cytotec (misoprostol.)" I don't even know if there IS a brand name versus generic. I get my meds through the military pharmacy so I don't pay for them, so I'd have no way of knowing.

I take 200 mcg 3 times daily, yes. I started out taking 200 mcg 3 times daily - I didn't build up to it or anything. Some here have built up to it, which is actually a good idea because this can have gastrointestinal side effects.

I'm still in remission, still doing just great!

Your best bet is to print out the abstract of the study on this med to take to your doctor - that's the only real hope you'll have of convincing him to prescribe this to you.

I hope the doctor will be willing to let you try it, and I hope it will help you!

Blessings,
Lori

P.S. Edited to add, I looked at the pills themselves and they have "Searle" stamped on them so I think that means they are the brand name rather than generic. But from what I'm able to see with the on-line pharmacies, there doesn't seem to be a really huge difference in price between the two - both generic and brand name are a fairly low-cost drug compared to, say, Elmiron.

[icsonja]

HI all it is Sonja, happy to see those on cytotek are doing ok and progressing, I quit for several days due to my back, and worries about mixing all the new meds with cytotek, until I could sort them all out.
I am going back on cytotek tommorow since surgery on my back is about three weeks away and I have to take a course of steroids prior to surgery.
So I hope all the meds mes, because I am in a world of hurt, both from my back and a bad flare (I might be having a little extra stress!!!)
Will let you all know, and thank you for all the concern and support, you all are really my only buddies sinnce I am not allowed to leave home or even walk around my house for more than 5 minutes. Thanks for keeping me sane (sorta)
Sonja

[ICLori]

Hi, Sonja, I'm so sorry you aren't doing well :( I am sorry too for the long delay in getting your back surgery done because waiting is the worst part. :(

Oh goodness, I think probably a pharmacist would be the best person to ask about the meds interacting with one another - I just have no clue - the pharmacist didn't warn me about any potential interactions so I don't know about any...

I'm sorry, too, that you are in a bad flare. The Cytotek has such a short half-life and leaves your system very quickly, so I would imagine the pain would come back full-force within a day or at the most two days of stopping it. :( But you can always start it again (watching out again for the GI symptoms because when you start again, you'll go through the adjustment again) when you feel the time is best.

Blessings, and hang in there until your surgery - do you have any good books you like to read? Now might be a good time to catch up on those books that you can get really wrapped up in, so that you can "escape" for awhile....

Lori

[violet]

Hi everyone. I`m on day 12 and I think its starting to help. My pain is not great at all. I still have alittle burning. That is today it wasn`t bad. Y esterday Was bad now that I remember I took 2 super Lortabs . I`m glad I have the pain pill for some bad days. At least I don`t have to take them everyday so thats a plus. Mystomace is still kinda acting up. I started drinking ginger root tea. Has anyone drank it. It tastes kind of spicy so I hope I`m not making it worse. Its susposed to help with the nausea. I am almost at the 2 weeks so I hope my stomace problems are almost gone. Talk tp you tomorrow.

[ICLori]

Hi, Violet, thanks for letting us know how you are doing! I'm glad it seems to be helping some. I'm sorry that it's still affecting your stomach though - I hope that by the time another week goes by, your stomach will be able to handle the Cytotec better.

I tried ginger once before - a couple of years ago I think - it really made my bladder flare badly. If you have increased pain on the days when you drink the ginger tea, you might want to consider stopping it...

I think one of the ladies on the board found that if she kept her stomach from being empty (snacked all day on crackers, etc.) her stomach was better. Mostly you have to be really sure never to take the medicine on an empty stomach - eat a good meal and then immediately take the medicine - it will be much easier on your system that way...

Keeping my fingers crossed that this will keep helping you!

Blessings,
Lori

[ICLori]

Just an update - I just realized I'm coming up on my 2-month milestone, LOL! Still in remission, still doing great. Drinking too much Coca-Cola, LOL. My bladder is fine with that but my jeans are getting tight :(

Hope everyone who is trying this is doing well!

Blessings,
Lori

[Butternut]

Hi everyone. Still doing fine. I took more info into Uro today, on Cytotec and a letter detailing my progress. I asked, in the note, that she tell other IC patients about my case and how Cytotec has helped me.
I just pray that when she sees and hears about all the good results that she will continue to prescribe Cytotec, as long as needed.

[ICLori]

Hi, Butternut, I'm so glad you are continuing to do well on Cytotec, and thank you so much for letting your uro know about this, I hope so much that other people will benefit from this medicine too!

Blessings,
Lori

[Dianne]

To those of you doing well on this, did any of you have it make you worse or burn after taking it in the beginning? I bombed on day 2 the first time and day 1 the second time. Just wondering if there would be any reason to try again.

[ICLori]

Hi, Dianne, not me...I hope the others say if they did or not....I just don't know. I think that your bladder just can't tolerate the Cytotec, maybe it's just too damaged to be able to process it right now. :(

Blessings,
Lori

[kimmichele]

How many people are doing better on cytotec? How long have you been on it? HOw many have tried it and had to quit? Maybe someone can make a chart.

Kim

[ICLori]

Kim, anyone can look back through this thread and see for themselves how many people are trying this, how they are doing, and who had to quit because of a bad reaction (two people that I'm aware of.)

Really I'm just too lazy to make a chart for people, LOL. Anyone who is truly interested in trying this, will have the motivation to look up Norm's old posts, the old posts by the lady from NOLA, and the posts on this thread. Most of the people trying this lately have only been on it a week or two - I think I'm the longest at two months - and of course I am in remission. The others seem to have had either a little or a lot of improvement, from what I can tell.

Blessings,
Lori

P.S. Besides, people really shouldn't be basing their medical decisions on what people on the boards are experiencing - this is not a controlled medical study. Best to use the study done in Belfast, showing that 87% of IC'ers who could tolerate this medicine found improvement. The study is posted a couple three times on this thread, if you want to go back through the posts and find it.

[akrose]

it isn't necessary to make a chart, just ask your doc to write a script for cytotec 200mcg po tid and start taking it, it will either work or not work. for me it is working. I haven't tried orange juice or coke yet, but chocolate milk shakes are working ok. so just do like we did, find an open minded doc., get the script and start the med. sorry dianne- i wish it helped a fellow nurse. i have one more week in the hospital as a hospital nurse and then just doing home health about 3 days a week, more sitting, less stress. today i was talking to an icu nurse who, just like many nurses had no time to empty her bladder the whole 12 hr shift- i warned her- don't do it, your bladder will turn on you. that is how cystitis slowly starts to appear in the bladder- too many hours of acidic urine in there. some professions aren't good for the human body- nursing is one of them, so that is why i am slowly freeing myself of the most stressful parts of it. - an answered prayer. - so is being painfree. hi to all of you, aileen

[MarcieL]

Hi all,

I got my doc to prescribe cytotec also. I started it tonight, my first pill!! I am just praying I am one of the lucky ones it works for and I can tolerate it. I decided to start it over a weekend and I have Monday off. I will post more as my journey with this continues.

Marcie

[Butternut]

I found that taking Cytotec in the middle or end of a full meal is best.
I had chocolate off and on for the last several days. Yesterday I ate spaghetti with organic sauce. Yesterday at breakfast I had regular coffee with chocolate in it. Still doing fine. !!!!!!!!! Testing, testing, testing....LOL.
Good luck all. Keep everyone informed. Try hard, don't give up.


Started Cytotec 1-24-06

[ICLori]

Thanks, AKRose and Butternut for checking in, it's wonderful to hear that you both are still doing well on the Cytotec and that you are able to tolerate some foods now that you weren't able to, before! That's great news!

That's good advice about taking Cytotec at the end of the meal rather than before the meal - that's what I always do, maybe that's why I had less problems with the Cytotec?

Marcie, keeping my fingers crossed for you that you will have good results from the Cytotec and that the side effects will not be too bad! Please let us know how you are doing.

Blessings,
Lori

[violet]

Hi,I`m on day18 and I do think its helping I still get some burning and I get up at night a lot. The Ultrum seens to help the burning. The pain is not as bad as before I stared so I hope it goes away compleatly some time soon. My stomace did real good today it didn`t bother me at all today. We are on page 18 on our thread is this the last page. I hope not I will certainly miss this post, it has been so helpful. I`ll check tomorrow.

[ICLori]

Hi, Violet, it's encouraging that it's helping you a little bit - I do so much hope that as time goes on it will help you more and more, but we should try not to get our hopes up in case it doesn't. I just don't know what will happen. I'm keeping my fingers crossed for you though.

I think maybe after about two months on this you might be able to tell one way or another if it's really helping...I know this medicine won't work for everyone, but I'm still hoping against hope that it will...

I'm glad too that the Ultram seems to be helping you now. I'm also glad that your stomach is tolerating the Cytotec better now.

Thank you for letting us know how you are! I know it's not helping you as much as we'd hoped yet - I kind of wonder if it's because your case is pretty severe - maybe we can't hope for too much too soon. Or it could be, it's just not going to work that well, I don't know. But I'm still hoping. Too soon to give up hope I think. We'll see after another month or two.

Blessings,
Lori

[twiggy]

Hi Ladies,

I am joining the ranks of cytotec users. First, God bless you, Lori! You have the courage and love to help us all! I've been through total hell the last three years. Watched my very active life go down the tube! My doctor wrote a script for Cytotec right away but, because of IBS, I will start with 100 mg/4 times per day. I am seeing him early this week so I want to discuss some anti-diahhrea (spelling?) medicine, too. My bowels and stomach are very prone to reacting so let's see how I do. If I can get through this with IBS problems, then there's hope for a lot more of us.

Wishing everyone the best!

Twig

[Butternut]

Please, please, please let this be a cure....

[Baba Yaga]

Kim, anyone can look back through this thread and see for themselves how many people are trying this, how they are doing, and who had to quit because of a bad reaction (two people that I'm aware of.)

Really I'm just too lazy to make a chart for people, LOL. Anyone who is truly interested in trying this, will have the motivation to look up Norm's old posts, the old posts by the lady from NOLA, and the posts on this thread. Most of the people trying this lately have only been on it a week or two - I think I'm the longest at two months - and of course I am in remission. The others seem to have had either a little or a lot of improvement, from what I can tell.

Blessings,
Lori

P.S. Besides, people really shouldn't be basing their medical decisions on what people on the boards are experiencing - this is not a controlled medical study. Best to use the study done in Belfast, showing that 87% of IC'ers who could tolerate this medicine found improvement. The study is posted a couple three times on this thread, if you want to go back through the posts and find it.
Lori, I will start a crudely maintained chart anyway next week in another subsection of the forum. This conversation can continue, but I'll try to round up names there of who tried it and what the result were for each person.

[akrose]

hi lori and butternut and violet- doing ok on the cytotec- but after working (6 post-op patients) 12hrs today and having some stressful event before working 12 hrs( a nightmarish experience), i can say that there is some slight burning in the bladder/urethral area, and urinary frequency, but when i have a nice easy day, the above symptoms are very minimal, and i do notice that the i have less dryness in that area, this cytotec definitely causes secretory processes in the organs of the stomach and bladder, producing a protective lining to these areas- what is interesting, is that i can feel it happening. when i think back to the last 5 years, i took alot of exedrine migraine for headaches, so maybe that and pepsi, ice tea and some horrible antibiotics led to this, and hopefully with prayer and cytotec- the internal lining of these organs is being replaced. so violet - when you have the burning- don't worry that it isn't working, just keep taking the med and wait with me and in time the symptoms will get less and less- let's trust God that he will help us through this- because he will- i promise you. have a nice night to all my friends, still wish we could meet somewhere in the middle of the states we all live in and just have a chocolate milkshake together. aileen

[ICLori]

Oh, my goodness, lots of posts today! Thank you all so much for posting!

Twiggy, I'm keeping my fingers crossed for you that this will work, but please don't get your hopes up too high at first, because we just don't know if it will work, or even if you will be able to tolerate it - some people have had horrible stomach cramps on it at first, and bad diarrhea.

Also, I'm not sure this is going to put people into remission. I'm still hoping that it might, as it's done for me and for Norm's wife, but the original study didn't say HOW MUCH benefit was derived from the Cytotec - it just said there was improvement - but improvement could be anything from 10% better (barely better) to complete remission. If this medicine only made you better (but not all the way to remission) would you still feel it was worth taking? Just trying to be cautious - I do feel that Cytotec might be a useful drug for many IC'ers but I'm not sure exactly how much benefit to expect - and for sure the study showed that not all IC'ers benefit from it so we have to expect that it won't always bring improvement. I'm just sort of worried each time a new person tries this because I am so worried it might not help, or it might not help enough, or it might cause bad side effects. Then that person might be terribly disappointed. :(

That being said, I do hope so much with all my heart it helps you a great deal, without too many bad side effects. And if there are side effects, I hope they go away after a couple of weeks as they seem to for most people.

###################################
Baba Yaga, thank you - I wonder if we could have a thing where each person would put their own post, and put how many days they've been on it, what side effects they've had, and what percentage of benefit they feel they've had (zero to whatever percent) just so that people can get a feel for it. And then I was thinking as time goes by, each person could update their post - like if another month has gone by, they could change the amount of time and show their current level of benefit - or even just adding on.

This is what discouraged me from trying to round up the results...it could get so complicated...because you'd have to have this chart that says, "at 21 days I was X% better with X side effects" and then for the same person, "at 2 months I was Y% better with Y side effects..." you could see where it could get really really complicated fast....also I wanted each person to say for themselves what the side effects are/were, how much it's helped them or not helped them, etc. because I would be very worried about putting words in people's mouths.
############################################
Hi, Aileen, I'm sorry you had a bad day with IC and just in general, I hope so much that the nightmarish experience you talked about is in the past now and won't cause harm in the future. I hope that you are okay!

I'm glad that it does seem to be helping you somewhat, but I'm sorry that you are still having some symptoms on the non-easy days....but even some improvement is better than none (I think) and I really am hoping that as time goes on, you might see further improvement. I think what I'd love to ask everyone who tried it - a couple of months after they first go on it maybe - "was it worthwhile to try this medicine?" I know Norm's wife took 9 months before she felt she was in remission. So that gives me hope that there might be continued improvement the longer one is on this medicine. But I don't know for certain. We are just working in the dark here, not much research, not even much anecdotal evidence to go on. I really wish I could get ahold of Norm. I wish he were here to give advice or to say what he's learned.

Anyway, hoping so much for continued improvement for everyone and I hope so very much maybe remission someday!

Blessings,
Lori

[Shayner]

Do you think cytotec would help if a person had mainly urethral discomfort as well as urgency?? I have not been lucky with any other form of therapy, though Prelief has helped to take the edge off a bit as long as I take it faithfully.

[ICLori]

Shayner, bladder pain often refers to the urethra, so that pain felt in the urethra is actually bladder pain. That's what a uro told me once anyways. I thought the problem was primarily my urethra, and told him so, and that's when he explained that to me.

Anyway, it helped me...helped something like 87% of the IC'ers who could tolerate it in the study - might help you. You have to be extremely careful to avoid pregnancy while trying it, though - are you able/willing to do that? That's the most important thing I think.

Other than that, if absolutely nothing else has worked and you are desperate for relief, this might be worth a try.

On the other hand, if you are experiencing pretty good relief just with the prelief, you might want to just stick with that.

Blessings,
Lori

[akrose]

Hi Lori and everyone- i am feeling good today, no pain, and this morning while i am at work in the hospital- i see this urologist- who used to give me some advice when the ic was really painful and i was working. he asked me how i was, and i said i was much better, i had found the best urologist for ic in virginia, then he quietly asked me what was so good about my new urologist- i told him about my new med- cytotec- he asked if it was helping and i told him a big -yes-!so now another urologist has heard our good news, and he supposedly gets (like it is a bad thing) all the ic patients. I wish for one day they felt this, they would sure change their way of thinking. see ya, aileen

[ICLori]

Hi, Aileen, glad you are feeling well today, and brava for you for telling the urologist about Cytotec! I also hope that more doctors will be open to the non-standard treatments such as Cytotec and Cyclosporine-A which seem to hold promise for treating IC. I think there are some patients who have failed all the standard therapies for IC, who might be helped by one of those two drugs.

Blessings,
Lori
I think it's been two months now today, hasn't it? 19 Feb? Two months and things are going great on Cytotec for me, still not having any bladder pain!

[Butternut]

I think we need to keep talking about this to everyone who is interested. Doctors, nurses, anyone who will help get the word out. I am not 100% healed but I sure feel at least 75% better.
Yesterday, I had about a tablespoon of ketchup with some fries. This morning I had a slight lower back ache, intermittantly, that is all. It seems gone now. Before Cytotec, I would have been sick from the throat down with acid reflux, feeling raw and post-void burning with backache.

[MarcieL]

Hello Everyone,

Well I am on day 3, the gastro symptons getting to me so far are just feeling a little sick to my stomach, not too bad considering I also have IBS. I will deal with this and continue to pray that it helps with my pain and burning, so far no change but hey it's only been 3 days and 7 pills right?? Thanks to you Lori and everyone else who is here and trying this. I think we all feel the same way, after being a test bunny for 50 different kinds of treatments which were way more invasive this is well worth a little gastro distress.

Marcie

[MelindaP]

I am still following this post with happiness! I am so glad there a quite a few of you getting relief!

I had my meeting with Dr. Moldwin & mentioned the Cytotec. He really didn't seem to know all that much about it. I hope to inform him more about it!!! For now, I am going to be starting urethral suppositories for my urethral pain.

ICLori, you are right about some of the urethral pain sometimes being actually in the bladder. I know for me, it actually is in the urethra & not the bladder. Dr. Moldwin saw the inflammation where the bladder meets the urethra, in the "bladder neck". My badder looked fine. I think you needs to actually go in (via cystoscopy) see what is actually going on in there. But that is not to say that Cytotec would not work for that pain as well. It very well might! It is worth trying if all eles has failed.

Melinda :)

[Vicki]

LOri- I just wanted to let you and everyone else know that I am having surgery to remove my remaining ovary as the cyst will not go away. Hopefully, I can try Cytotec again after I get through this surgery. I am hoping that I might get another remission like I did after my last surgery when they removed my uterus and left ovary. I truly believe all my problems are due to endo on the bladder. I praise God that so many of you all are having positive results. It does my heart good to know that you all are getting some relief. I know that someday my relief will come as well. Blessings and Hope, Vicki

[Franny]

Many of us may not be commenting but are watching and listening and waiting to see what is going on or what will happen in this thread. Please keep the info. coming! This type of positive interaction is what the internet is all about. Thanks to all of you. Fran

[violet]

Hi, Sorry I said day 18 on my other thread but it was day15. Tday is day16. Today I had quite abit of urethra burning. Do you think urethra burning is harder to treat than just bladder pain. Because my bladder doen`t hurt anymore its all my urethra. Also I get up at night alot are any of you having suscess with any med.other than Detrol. Detrol didn`t help me at all when I was taking it. Have anyof you gone into tolerance with Ulram. Do you need more and more so it will help the pain. I have that problem with Lortabs. Thank you.

[ISONormal]

akrose,
I live in Virginia, too. Could you let me know who that uro is? Would love to know. You can send me a private message if you don't want to post it. Thanks!!!!!

[ICLori]

Wow, thanks everyone for posting! Good luck Vicky with your surgery, I hope you go into remission afterwards! Good luck Marcie with the Cytotec, I hope that it helps you some eventually!

Violet, I think Ultram is a bit different from narcotics - although part of the effect is a narcotic effect, the main part of the pain relief from these as I understand it is that of a tricyclic antidepressant. They work in the same way as those. So at least part of the pain relief, shouldn't be the type of pain relief you end up with tolerance for. I really don't know....you might want to ask that on the pain management boards, might be more people who know there...but just wanted to say, Ultram does not work quite the same way a narcotic does.

Blessings,
Lori
P.S. Violet, some people have gotten relief from urethral burning with drinking almond milk, rice milk, or taking prelief - might be worth a try.

[Butternut]

I read that Cytotec can possibly cause some breast pain. I had already been experiencing some left breast discomfort and had had a mammogram a couple months ago. I have not found any lumps, thickening or discharge.
I also have nerve pain stemming from the degenerative disc disease of my spine, which has been causing pain and numbness down my left arm. If I lift grocery bags or anything heavy with my left arm, it gets worse. Anyway, the left breast sensitivity and stinging/sticking feelings were not improving, so today I went to see my Gynocologist. He checked me over so well that I NEED an ice pack just for that reason! If you know what I mean... He found nothing but did mention that Cytotec can cause some hormonal activity and this may be causing the extra sensitivity. Told me to use Vitamin E 400 I.U. twice daily orally to help block the pain and to apply ice packs.
It was such a relief that he did not find anything questionable. I asked him if he thought Cytotec was safe, he said yes and that it should help my bladder heal. I asked him why doctors were not prescribing it for IC and he said he thought it was because new drugs come up all the time and they forget about the old ones. He said it is a good drug.
Thank You God for a million things today. Please help everyone get relief. This trial, for me, is worth it. I can deal with other aches but the bladder pain/back pain/post-void burning sure was difficult to handle without it changing my life! Well worth it.
Gals & Guys, I had a few bites of red tomato this morning. So far, so good.

[MarcieL]

Hi all,

I am on day 4, no IC relief yet but the gastro symptoms are starting to kick my butt. Spending tons of time staring at the potty :( . I am determined to make it thru this and continue. I figure if I can stand the pain and burning I can do this.

Keeping my chin up !!

M

[ICLori]

Wow, Butternut, thanks for letting us know! So I wonder what that means exactly with Cytotec? Does it cause estrogen levels to fluctuate or something? Could it cause endometriosis to get worse? My doctor didn't know anything about this but now I am really wondering...

I hope your breast pain gets better...did he say it was because of the increased prostaglandins? I know it means tons more prostaglandins in your system, could those affect breast tissue I wonder? Sorry so many questions, LOL!

I'm so sorry about your nerve/disc problems, that's awful. It's bad enough you have one chronic pain disease (IC) it's not fair to have more than one!

Marcie, I'm so sorry you are getting the bad gastro symptoms...I do hope they go away soon for you...

Blessings,
Lori

Argh I'm so frustrated because I keep trying to look up side effects of Cytotec and all I keep getting are the common ones, the diarrhea etc. And I want to see ALL the possible side effects, not just the common ones....

[MarcieL]

Lori,

I can't honestly thank you enough, for the first time in 8 years there is actually something that might really help me, for you sharing that with us I am forever grateful. Even if I am not one of the ones it helps, it shows us that there really is hope and it isn't always with the new fancy drugs or the invasive procedures. We all need to be open and continue to look for what will help us and then be as selfless as you and share it.

My respect and gratitude to you and all of the posters here is without end. I really don't know where I would be today had I not found the ic-network and all of the wonderful people that make it such a special place. I have not been vocal and posted a ton but I always read and read and found solice, friendship and hope from all of you.

Thanks to all of you!!
Marcie

[Oxana]

Ladies, I just curious, this drug is helping with all of your symptoms or just with some? It's mean that you can feel like old yourself again with eating no-no food too? What about bladder/pressure/fulness feelings or frequency? It's very interesting.

Thank you and I wish it helps you all great! I'm very very happy for you! :kissing:

[ICLori]

Hi, Marcie, thank you for your kind words! :)

I finally found some good information about all the possible side effects of Cytotec - this is the most complete list I have found so far - so I will cut and paste it here!

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

SIDE EFFECTS

The following have been reported as adverse events in subjects receiving Cytotec:

Gastrointestinal

In subjects receiving Cytotec 400 or 800 mcg daily in clinical trials, the most frequent gastrointestinal adverse events were diarrhea and abdominal pain. The incidence of diarrhea at 800 mcg in controlled trials in patients on NSAIDs ranged from 14-40% and in all studies [over 5,000 patients] averaged 13%. Abdominal pain occurred in 13-20% of patients in NSAID trials and about 7% in all studies, but there was no consistent difference from placebo.



Diarrhea was dose related and usually developed early in the course of therapy (after 13 days), usually was self-limiting (often resolving after 8 days), but sometimes required discontinuation of Cytotec (2% of the patients). Rare instances of profound diarrhea leading to severe dehydration have been reported. Patients with an underlying condition such as inflammatory bowel disease, or those in whom dehydration, were it to occur, would be dangerous, should be monitored carefully if Cytotec is prescribed. The incidence of diarrhea can be minimized by administering after meals and at bedtime, and by avoiding coadministration of Cytotec with magnesium-containing antacids.

Gynecological

Women who received Cytotec during clinical trials reported the following gynecological disorders: spotting (0.7%), cramps (0.6%), hypermenorrhea (0.5%), menstrual disorder (0.3%) and dysmenorrhea (0.1%). Postmenopausal vaginal bleeding may be related to Cytotec administration. If it occurs, diagnostic workup should be undertaken to rule out gynecological pathology.

Elderly

There were no significant differences in the safety profile of Cytotec in approximately 500 ulcer patients who were 65 years of age or older compared with younger patients.

Additional adverse events which were reported are categorized as follows:

Incidence greater than 1%: In clinical trials, the following adverse reactions were reported by more than 1% of the subjects receiving Cytotec and may be causally related to the drug: nausea (3.2%), flatulence (2.9%), headache (2.4%), dyspepsia (2.0%), vomiting (1.3%), and constipation (1.1%). However, there were no significant differences between the incidences of these events for Cytotec and placebo.

Causal relationship unknown: The following adverse events were infrequently reported.

Causal relationships between Cytotec and these events have not been established but cannot be excluded:

Body as a whole: aches/pains, asthenia, fatigue, fever, rigors, weight changes.

Skin: rash, dermatitis, alopecia, pallor, breast pain.

Special senses: abnormal taste, abnormal vision, conjunctivitis, deafness, tinnitus, earache.

Respiratory: upper respiratory tract infection, bronchitis, bronchospasm, dyspnea, pneumonia, epistaxis.

Cardiovascular: chest pain, edema, diaphoresis, hypotension, hypertension, arrhythmia, phlebitis, increased cardiac enzymes, syncope.

Gastrointestinal: GI bleeding.GI inflammation/infection, rectal disorder, abnormal hepatobiliary function, gingivitis, reflux, dysphagia, amylase increase.

Hypersensitivity: anaphylaxis

Metabolic: glycosuria, gout, increased nitrogen, increased alkaline phosphatase.

Genitourinary: polyuria, dysuria, hematuria, urinary tract infection.

Nervous System/Psychiatric: anxiety, change in appetite, depression, drowsiness, dizziness, thirst, impotence, loss of libido, sweating increase, neuropathy, neurosis,confusion.

Musculoskeletal: arthralgia, myalgia, muscle cramps, stiffness, back pain.

Blood/Coagulation: anemia, abnormal differential, thrombocytopenia, purpura, ESR increased.


DRUG INTERACTIONS

See CLINICAL PHARMACOLOGY. Cytotec has not been shown to interfere with the beneficial effects of aspirin on signs and symptoms of rheumatoid arthritis. Cytotec does not exert clinically significant effects on the absorption, blood levels, and anti-platelet effects of therapeutic doses of aspirin. Cytotec has no clinically significant effect on the kinetics of diclofenac or ibuprofen

[Shayner]

I haven't had any luck with urethra pain. I tried ditropan but I had to stop after about 2 weeks. My mouth and throat were just too dry, I barely had a voice, more a croak. My problem is the same, there isn't a whole lot of bladder pain, mainly my urethra. It's so frustrating that nothing seems to help. Prelief does help a little bit but not enough that I am not thinking about the discomfort for most of the day, especially after I go to the bathroom.

This disease sucks because it never seems to give me a break. When I was younger it would come and go, now there is hardly any relief. I hope to try cytotec later on. My husband would like to add a new addition into our family and being pregnant is the only time I felt normal.

Sorry I can't shed any light on the subject, I'm just plugging along one day at a time. :grouphug:

[ICLori]

Shayner, welcome! Some IC'ers have found some relief from urethral pain by drinking almond or rice milk (some get relief with one, some with the other) and by heat/cold packs.

Hope you feel better soon.

Blessings,
Lori

[Franny]

Shayner, Have you tried Urelle? I had great relief from it and no other medication similar to it worked even though they are in the same class of drug and supposed to do the same thing(Azo, pyridiem etc.).

[Franny]

ICLori, do you think using Evening Primrose oil would give me a good indication if I would be a good candidate for misoprostal? You mentioned in an earlier post you were using both since they both had some of the same properties. thanks. Frn

[ICLori]

Hi, Franny - I had used Evening Primrose Oil before without it helping me any - that's why I had a half-full bottle sitting around that I picked up again and started using again - and actually I ran out about two weeks ago and haven't purchased another bottle so I don't think it was doing anything one way or another to be honest. Haven't noticed any difference one way or another so I'm not going to bother buying another bottle of Evening Primrose Oil.

Don't know if any other IC'ers have previously tried EPO or not...but I'm pretty sure it's not interchangeable with the Cytotec...still it's worth a try if you'd like to try that first, can't hurt anything...

Blessings,
Lori

P.S. I found one post by someone who seemed to get benefit from the EPO (at least temporarily) - if you do a search you might find other posts...might be worth trying - I always say, anything that doesn't seem to have bad side effects, is worth trying first before the stuff that does have side effects....

Anyhow, here's the post I found:

evening primrose oil, slippery elm, & marshmallow

--------------------------------------------------------------------------------

I have read that these plants are soothing to the bladder. I tried evening primrose oil when soon after I became symptomatic and my symptoms went away completely for about a month; unfortunately they returned. Has anyone else tried any of these?

[pottywoman]

Are you talking about the cystoprotek pills or something else?

[pottywoman]

I just read one of the posts so guess this is not the cystoprotek. What are the side effects with it and do you have to take birth control with it even if you know you wil never get pregnant? I can't get the bc because I won't do the physical. Are there any risks in taking it and do you need a prescription?

[ICLori]

Hi, Pottywoman, a list of side effects follows for Cytotec (you are right, it's a prescription medicine, not the OTC Cystoproteck)....it's very important that you avoid pregnancy one way or another. If you have had a hysterectomy or are in menopause, you don't need to worry. Otherwise, you must use a very reliable method of birth control to ensure you do not become pregnant while on this medicine.

@@@@@@@@@@@@@@@@@@
SIDE EFFECTS

The following have been reported as adverse events in subjects receiving Cytotec:

Gastrointestinal

In subjects receiving Cytotec 400 or 800 mcg daily in clinical trials, the most frequent gastrointestinal adverse events were diarrhea and abdominal pain. The incidence of diarrhea at 800 mcg in controlled trials in patients on NSAIDs ranged from 14-40% and in all studies [over 5,000 patients] averaged 13%. Abdominal pain occurred in 13-20% of patients in NSAID trials and about 7% in all studies, but there was no consistent difference from placebo.



Diarrhea was dose related and usually developed early in the course of therapy (after 13 days), usually was self-limiting (often resolving after 8 days), but sometimes required discontinuation of Cytotec (2% of the patients). Rare instances of profound diarrhea leading to severe dehydration have been reported. Patients with an underlying condition such as inflammatory bowel disease, or those in whom dehydration, were it to occur, would be dangerous, should be monitored carefully if Cytotec is prescribed. The incidence of diarrhea can be minimized by administering after meals and at bedtime, and by avoiding coadministration of Cytotec with magnesium-containing antacids.

Gynecological

Women who received Cytotec during clinical trials reported the following gynecological disorders: spotting (0.7%), cramps (0.6%), hypermenorrhea (0.5%), menstrual disorder (0.3%) and dysmenorrhea (0.1%). Postmenopausal vaginal bleeding may be related to Cytotec administration. If it occurs, diagnostic workup should be undertaken to rule out gynecological pathology.

Elderly

There were no significant differences in the safety profile of Cytotec in approximately 500 ulcer patients who were 65 years of age or older compared with younger patients.

Additional adverse events which were reported are categorized as follows:

Incidence greater than 1%: In clinical trials, the following adverse reactions were reported by more than 1% of the subjects receiving Cytotec and may be causally related to the drug: nausea (3.2%), flatulence (2.9%), headache (2.4%), dyspepsia (2.0%), vomiting (1.3%), and constipation (1.1%). However, there were no significant differences between the incidences of these events for Cytotec and placebo.

Causal relationship unknown: The following adverse events were infrequently reported.

Causal relationships between Cytotec and these events have not been established but cannot be excluded:

Body as a whole: aches/pains, asthenia, fatigue, fever, rigors, weight changes.

Skin: rash, dermatitis, alopecia, pallor, breast pain.

Special senses: abnormal taste, abnormal vision, conjunctivitis, deafness, tinnitus, earache.

Respiratory: upper respiratory tract infection, bronchitis, bronchospasm, dyspnea, pneumonia, epistaxis.

Cardiovascular: chest pain, edema, diaphoresis, hypotension, hypertension, arrhythmia, phlebitis, increased cardiac enzymes, syncope.

Gastrointestinal: GI bleeding.GI inflammation/infection, rectal disorder, abnormal hepatobiliary function, gingivitis, reflux, dysphagia, amylase increase.

Hypersensitivity: anaphylaxis

Metabolic: glycosuria, gout, increased nitrogen, increased alkaline phosphatase.

Genitourinary: polyuria, dysuria, hematuria, urinary tract infection.

Nervous System/Psychiatric: anxiety, change in appetite, depression, drowsiness, dizziness, thirst, impotence, loss of libido, sweating increase, neuropathy, neurosis,confusion.

Musculoskeletal: arthralgia, myalgia, muscle cramps, stiffness, back pain.

Blood/Coagulation: anemia, abnormal differential, thrombocytopenia, purpura, ESR increased.


DRUG INTERACTIONS

See CLINICAL PHARMACOLOGY. Cytotec has not been shown to interfere with the beneficial effects of aspirin on signs and symptoms of rheumatoid arthritis. Cytotec does not exert clinically significant effects on the absorption, blood levels, and anti-platelet effects of therapeutic doses of aspirin. Cytotec has no clinically significant effect on the kinetics of diclofenac or ibuprofen
@@@@@@@@@@@@@@

Hope this answers your questions,
Blessings,
Lori

[MelindaP]

Franny,

Is Urell the same thing as Urised? Turns your urine bluse? I have Urised but don't feel it helps all that much with urethral pain.

Thanks!

Melinda :)

[violet]

Hi, this is my 17th day. It has been a good day no urethral burning, no pain pills either. I hope this continues, now tonight I will see how often I get up. I had breath cancer will the cytoter cause me to get more hormons in my boby? Reading butternuts thread she said somthing about hormons. Thank you violet

[Butternut]

Very good question Violet. It is a question that I would like the answer to also. Gyno said it causes hormonal action and thus can cause my breast pain to worsen I would like to know more but don't know where to get more info other than what we have found. And he said he feels it is safe.

[ICLori]

I sure wish I knew too! My doctor knew I had endometriosis before putting me on this, and he wouldn't have put me on anything that affected me that way hormonally.....

All I can think of is prostaglandins can sometimes cause breast pain too (not frequently, and breast pain was reported less than 1% of the time - fewer than one out of 100 patients reported it, in other words) and this is a prostaglandin....

Please, Butternut, if your doctor can shed more light on this I would really love to know more....

I know that they use this medicine on people who have had various cancers, for ulcer protection...there are no contraindications against that....whereas with breast cancer, etc. they never put you on hormones - so from what I can tell this medicine is safe that way....

Blessings,
Lori

P.S. Best thing to do is call a pharmacist if you have questions - they know so much about medicines and about who can be prescribed what and what the contraindications are...they know even more than doctors do about drugs really...

P.P.S. I'm glad you had a good day, Violet! What I am hoping for is that you have more and more good days, and fewer and fewer bad days, the longer you are on Cytotec.

[twiggy]

Started cytotec! I am going to go at this slowly though. One pill at a time until I work up to the maximum dosage. Must keep the bowels quiet! May God help us all!

[Butternut]

Lori, good idea. Pharmacist would be the one to ask about anything Cytotek.

[pottywoman]

Thanks Lori for telling me what the side effects are. Has anyone had a problem with them? Can a Uro prescribe it? I have a hard time with pills and side effects so not sure if I dare to try it.

[ICLori]

Hi, Pottywoman, a uro could prescribe it, but you might have a hard time getting it if you are of childbearing age because of the risks if you become pregnant. I had to go to five different doctors before I found one to say "okay."

Most of the side effects seem to be gastrointestinal - stomach pain/diarrhea/nausea sort of thing - in most people this is just temporary and wears off after a week or two.

If you are doing okay on your other meds you probably don't want to try this - this is mainly for people for whom nothing else has worked and they are certain they can avoid pregnancy.

Blessings,
Lori

P.S. If you really want to try this, your best bet would be bringing along a copy of the study abstract (it's buried somewhere in this thread, you can find it if you look) with you. Doctors are much more willing to prescribe a medicine when they can see a study done on it showing it to be effective.

[pottywoman]

I'm not really doing well with the few meds I take. Just trying to get along. If I could just stop the pain it would be nice. I can't remember what a painfree life was like. :rolleyes: I'll see if I can find the study in the threads. Will give me something to do. :biglaugh: As far as getting pregnant. I'm not having sex or ever will so that pretty much stops that. Unless I am visited by little green people at night without knowing it. ;)

I'm sure you have told this before but how bad was your IC? Pain/frequency

[pottywoman]

Wow, guess what?? I hit the right thread with the first try. :bow: :biglaugh:

[ICLori]

Hi, Pottywoman, I'm glad the study wasn't too hard to find!

It does sound like maybe this medicine could be worth a try for you. I know it doesn't help everyone, and I'm not sure how MUCH it helps those it does help, but I'm of the opinion that it's worth it to just keep trying every medicine available, until you find one that helps, instead of just living in pain. But of course most medicines have chances of side effects, and those must be weighed too. The Cytotec side effects aren't really too awful as long as pregnancy is avoided.

See what your doctor has to say about the study, and whether or not the medicine might be right for you to try. It never hurts to have a discussion with your doctor about all the possible meds for IC that you haven't tried yet. Another one worth looking into (IMO) (but again there are side effects, sadly) is Cyclosporine-A. There have been some studies done on that one too showing some promise.

My urogyn and I decided to try Cytotec first instead of the Cyclosporine-A first because we both felt the side effect profile wasn't as bad for Cytotec. But I think both of these medicines are worth keeping in mind when other more standard treatments have failed.

Blessings, and good luck
Lori

[Baba Yaga]

http://www.ic-network.com/forum/showthread.php?t=24988

OK, peeps, here it is!

Remember, your conversation with Lori and others continues here in this thread.

The one I have linked to is for brief synopses of what has been going on for you. To get the most thorough overview we need everyone who spoke to their doctor about it, even if their doc discouraged trying it (that is data in itself), to those who tried their first pill and couldn't tolerate it, to those who tried it for longer, to those who have been on it for a while and intend to continue. Please read the first post in the thread I linked to and then post your contributions. I will try to do a consolidation after about a week.

[ICLori]

Thank you, Baba Yaga, what a great idea! :)

Blessings,
Lori
P.S. I went to a play last night - half hour drive each way, nearly 3 hour long play - didn't have to go potty the whole time! It was great! And I even had a rum and coke in the lobby and still didn't have to go!

[violet]

I`m on day19. It was not a good day at all.Last night I started hurting real bad. both bladder and uretha. I took extra Lortabs and they wouldn`t touch the pain. So I didn`t get much sleep last night. All day today I have been in pain and I though I was doing so well. I cleaned a friends house and I worked pretty hard , with the vacume,It was a heavy one. I had to carry it up the stairs, I wonder if that might have messed up my bladder. I hope I am better tomorrow. Does anyone know if lifting heavy things messes your bladder up. I like to clean houses for extra money as I am retired.

[ICLori]

Violet, I'm so sorry you had an awful day :( I was hoping so much that maybe the Cytotec was starting to work for you.

Some people have said that if they are very active physically, it affects their bladder. I just don't know. I sure hope you feel better soon though.

Blessings,
Lori

[akrose]

Today was a good day, no pain, it was great. when i have no pain, i can't even remember what the pain feels like, and i feel like I am forever free of it. Cytotec and Elmiron are still my meds. I have added golden delicious apples and blueberry yogurt and blueberry tea to my list. Violet, when I was working in the hospital and walking and lifting, etc. the urethral, vulvar pain would immediately come back. Now that i am no longer working there and mostly sitting and driving to pts homes and doing home health, pain is subsiding. tommorrow, I am planning a 3 hr rollerblading day, last time- no pain. want to try it again. I saw my uro on weds, and he told me that we have pretty much tried everything and it is up to God and the above listed meds to get me healed. I have got to believe that this can happen. I do wonder if I would ever be able to be a 'normal woman' - have sex and not be in horrific pain the next day- again??? have a nice evening to my new friends, aileen
I don't if any of you except the nurses know what it feels like to ask patients everyday- do you have burning when you urinate- the pts are 20 years older than me- and they all say no they don't- this thing we have can make me feel so alone sometimes. that is why i wish i could meet a few of you.

[Butternut]

akrose, I can so relate to burning. I have not had any lately but the memory of trying to stay at work, the whole shift, 12 hrs., while burning and uncomfortable and wanting to go back to the bathroom to try to get the burning to stop and have to take care of patients, even if I was chilling, burning, hurting, sweating, etc....so terrible. And co-workers don't have any sympathy because they need our help and they can't relate to everyday bladder trouble. I am so VERY thankful for this relief. Now if I could just lose weight.....LOL. I am so glad you feel better.

[ICLori]

Hi, Aileen and Butternut, it's good to hear from you! Aileen, I hope so much that between the Elmiron and the Cytotec, you will be able to do everything without pain. I think both drugs probably require some time before they reach peak effectiveness. I know in the study on Cytotec, they didn't evaluate patients until they'd been on it for three months - maybe three months is a good milestone for evaluating whether or not Cytotec is working for you. And Elmiron can sometimes take up to a year to really reach full effectiveness. So there is still lots of reason to hope that you will continue to get better and better.

Butternut, sounds like you are doing pretty well, I'm so glad for you!

I'm just on the edge of my seat really with all of this, hoping so much that the people who are trying Cytotec will get some benefit from it. I feel as if we are all having to do experiments on ourselves, because there was only that one small study done on Cytotec.

I told my doctor that a number of IC'ers were trying Cytotec, and he was very interested - I told him that it's a bit too soon in the process (many have just recently started the Cytotec, kind of too soon to tell) but that after a couple of months I would print out some of the results for him (from the compilation thread that Baba Yaga started) so that he could learn more about whether or not Cytotec might be an effective remedy for IC.

Blessings,
Lori

[akrose]

when i spoke with the urologist on weds. he told me about a pt who comes in every 6 wks for dmso instillation, no meds- no elmiron, nothing, it puts her in remission for 6wks, then he tells me about the pre-school teacher who took elmiron 300mg bid for 12months, and is now in remission w/o elmiron. he said that the treatment of ic is an art not a science, so that what works for one pt, may work or not work for another, which is why they try so many different methods to treat, till they come up with the one that works, that is why i am his only pt at this time on cytotec, but to my surprise he had read the belfast study. have a nice sat., your friend, aileen

[violet]

Hi, this is violet. I am on day 23. The flare I had is finally gone. I feel pretty good except I still get the uretha burning. I bought some almond milk. But its called blue Diamond almond breeze, is this the right stuff?. It doesn`t seen to help yet. I`m still trying. Is this the right stuff. Please let me know. I still have to take pain pills for the burning. Do you drink it alone or with food or on an emply stomace? Thank you.

[Dianne]

Yes that's the right stuff. No idea why it works for me when nothing else does. I started out drinking 4 oz. every 4 hours. I got relief immediately like within the hour. Now I drink 8 oz. three times/day and that takes care of it. Good luck.

[Oxana]

Ladies, tell me, please were you are getting this almond milk?
Thank you.

[purpleviolet]

Hi all - I am back from my Hawaii vacation, (it rained alot), and was eager get back to read these posts. I will not be participating in the new drug trial (herpes took care of that - why didn't they clarify the questions on the survey and on the phone?) and although I am disappointed, I will go to my uro and ask for cytotec. I had some rough days on vacation - probably due to digressions of small amount of pineapple and guava/passion fruit drinks which were handed out on plane and in hotel (couldn't resist). Being on vacation made me feel more miserable because everyone else seemed to be enjoying themselves.... You know how it goes. By the way I think Bladder-Q did nothing - I've tried almost 3 bottles by now, and maybe made me worse. I guess I don't respond to quercetin ( main ingredient in it and also in Cysta-q and cystoprotek, both of which I have also tried.) So I will try to get cytotec. PeeVee

[ICLori]

Hi, everyone! Violet, I hope that the almond milk (you can find it at most grocery stores, it's in a box like the rice milk is - in fact it's often in that same section. In my grocery store, all that stuff is in the "health food" type section where they have what I think of as "granola" stuff.) will help you with the urethral burning. It has helped some IC'ers (but not all, of course.) It might be worth a try.

PurpleViolet, those herbal remedies didn't work for me either - in fact they made me flare :( which really disappointed me. I just don't know why they work well for some but not for others, this IC stuff is such a mystery!

I hope so much that everyone on Cytotec, or who will be beginning it, will get better and better. I hope for remission soon for all of us, for all IC patients really, and more and more effective medicines that will really work for everyone.

Blessings,
Lori

[Franny]

I don't think the Almond milk works for me. Last time I tried it I burned. I will try again someday in case it was something else but for now I am too scared. Has anyone else had a bad reaction to almond milk? It seems so popular. I seem to have a contrary to the IC diet bladder anyway. I can eat tomatoes, coffee, chocolate,oatmeal, kiwi and strawberries but cannot tolerate pears,poultry,pnut butter,honeydew mellon....figuring out my diet has been a continuing challenge.

[kimmichele]

I get almond milk at the health food section in the grocery store. I like the vanilla. It does help my bladder. the only problem with it is it is addicition because it is sweet. I thought about making my own, but there are other ingredients it it - its hard to tell what in it works - but is does help!
Kim

[Baba Yaga]

kimmi -- the plain is not nearly as sweet. you could try that, or mix it with the vanilla one or with a little pear juice?


Lori, I am counting on you to crack the whip over time on the delinquents ;) who haven't posted their data to the other thread.

[kimmichele]

ah ha. I got the plain at first because I didn't know if the vanilla flavoring was ok for my urethra. I added vanilla but it wasn't nearly as good as the vanilla flavored almond milk -now I know why -sugar...
Kim

[lm2]

Lori,

Can I ask what were your symptoms before and how bad were they?

Thanks

[ICLori]

Hi, Im2, my symptoms were mostly feeling like I had a UTI nearly all of the time. Pressure and a feeling of my bladder always being full even when it was empty. I know that doesn't sound all that bad, and I didn't have pain bad enough to make me cry or anything, like some have, but even still it drove me nuts and I was ready to take my bladder out. Anyway I had pain all evening/night long and much of the day as well. So I thought of my symptoms as being fairly severe because they were pretty constant. But some IC'ers have pain so bad they can't walk or anything so really my symptoms weren't severe from that point of view.

Anyway, the Cytotec has been my miracle - I still don't really understand why - it seems to work pretty well for some of us but maybe not all...it's hard for me to tell because some have just started it recently so we don't have a clear picture yet. But I think this medicine might be useful to some IC'ers.

But you want to try all the standard remedies first for IC - this isn't the first one to try at all - it's mostly just another drug to keep in mind when you've already tried and failed every other remedy. There are some side effects, and it can be very dangerous if you become pregnant so you have to really be very sure 100% that you won't become pregnant while on it.

Have you tried other remedies for IC yet?

Blessings,
Lori

[lm2]

Yes, I've tried it all (except the interstim). I've had IC and been posting on this board since 1999 (changed my username in '02). :(

That have-to-go feeling is the one I can't stand either. I also have pain, but it's the pressure feeling that drives me insane. I don't want to get my hopes up because I've tried so many things with high hopes only to be disappointed, but it's nice to hear there is at least something to consider. I actually had a bad bout of gastritis for several months last summer so if my bladder is suffering a similar problem, I could theoretically see how this might help.

Glad you are feeling better.

[violet]

Hi again. The almond milk doesn`t seem to be helping. But I will keep trying. Also this is my24th day on cytoter and it doen`t seem to be helping either. I will keep trying. I see m y doc in march, I hope he will have a plan up his sleeve. I get up so often at night, so I am tired all day. I have taken ultrm the last 2 nights just to help with the pain and urge to go to the bathroom. I have the urge and there is not much there. I will keep trying .

[ICLori]

Hi, Violet, I'm so sorry the Cytotec isn't helping you. :( I know in the study it didn't help all IC'ers. I hope so much your doctor will be able to help you in March. If you've already gone through all the usual treatments for IC, the last one I can think of left for you might be Cyclosporine-A - there are some studies done on that that have been very promising.

I hope that something is found to help you soon.

Blessings,
Lori

[MelindaP]

Hi ICLori & everyone!

Still following this thread & am glad that the cytotec is helping some of you. I mentioned it to Dr. Moldwin when I spoke with him the other day. He said that it was "really heavy stuff" (whatever that means) and that you need to have your liver checked repeatedly while on it. I just thought I should mention it to those who are taking it & their uros did not mention to have your liver checked.

I actually need to have my liver checked as I have been Elmiron for quite a while now.

Melinda :)

[ICLori]

Hi, Melinda, thanks for letting us know what Dr. Moldwin said! Gosh, it wasn't on the insert given to me by the pharmacy - no mention of liver problems - in fact I googled trying to find some mention of Cytotec causing liver damage or anything like that and couldn't find anything.

Actually what I found was a site claiming that Cytotec is safe to administer to patients who already have hepatic (liver) or renal (kidney) impairment - something about how it's processed.

Here's the link for that - it also talks about how Cytotec works exactly to protect the mucosa...very interesting stuff!:

http://www.arthritis.co.za/misoprostol.html

This is definitely something worth talking to your doctors about. But liver damage is not listed by the manufacturers of Cytotec as one of the possible complications, so....I kind of have to wonder if Dr. Moldwin misheard you and thought you said Cyclosporine....

Blessings,
Lori

P.S. Here's the snippet where it says it's safe for patients with renal/hepatic impairment...

@@@@@@@@@@@@
18. Can Cytotec® be used in patients with Compromised Liver or Kidney Function? How does this compare with H2-receptor Antagonists?

Cytotec® (Misoprostol) is metabolised by fatty acid oxidising systems found in organs throughout the body. Its metabolism and plasma levels are therefore unlikely to be affected markedly in renal dysfunction or hepatic impairment. This suggests that the drug can be safely administered to patients with hepatic or renal impairment without the need for dosage adjustment.

@@@@@@@@@

Ah, see, this might provide a clue - when you first mentioned it to Dr. Moldwin, he knew nothing about it:

I had my meeting with Dr. Moldwin & mentioned the Cytotec. He really didn't seem to know all that much about it. I hope to inform him more about it!!! For now, I am going to be starting urethral suppositories for my urethral pain.

I'm guessing he saw the studies on Cyclosporine-A (which IS really heavy stuff and really DOES require careful hepatic and renal monitoring of patients) and got confused between Cytotec and Cyclosporine-A...

[purpleviolet]

Guess what guys - I got my misoprostol today. I split the 100mg pill in half and took it after dinner. I'm going to titrate up real slow so I hopefully can avoid side affects. But it was a bummer day 'cause my daughter has bad stomachaches and headaches. She's being tested again for mono and celiac disease. Somethings amiss with her. My celiac blood tests were negative. but there could be false negatives. I wonder if her problems are related to mine? Anyway back to the misoprostol - doc looked up side affects and didn't say anything about liver. Lori - thanks for the link. I won't know if it is working unless my capacity actually increases. On good day's I don't have pain for awhile between voids. The pain starts as soon as there is a few ounces to pee and then I go and it is OK for awhile again. On bad days some pain is always there - either on the left side of the bladder and continuing over all of it the more I hold urine, or down in the urethra. Sort of a stinging irritation. I'll know when something is working when I can drink an alcoholic drink or a cup of coffee with no after affects. I may also need a hypnotist. I can't imagine anymore what life is like with a normal bladder. I've forgotten. I think I'll keep up th 20 mgs. of hydroxyzine for the sake of keeping things constant. PeeVee

[ICLori]

Keeping my fingers crossed for you, PeeVee! I hope so much too that the doctors can help your daughter to get better.

Blessings,
Lori

[Butternut]

Update: Ate a whole cup of strawberries with Splenda, two nights in a row at work. Doing fine!!! AND I only had two Cytotec tablets each day.

I wish this relief for all....

[MelindaP]

Hi everyone!

You know ICLori, you may be right because I did mention both medications to him at that time. Maybe he did confuse them. Did not mean to alarm any of you!

Butternut- That is awesome! I dream of the fruit I used to eat...... I need to start experimenting more because I found chocolate does not irritate me!

Melinda :)

[purpleviolet]

Thanks IClori for your concern. I'm also posting under Baba Yaga's thread under Other Treatments in response to the polls.

[ICLori]

Hey, Butternut, that's great news! I just wish everyone were getting great results.
:( I guess I always hope for the impossible.

Hi, Melinda, you did a good thing by passing on the info - I was just kind of thinking out loud there because it was confusing to me, I figured if liver disease were a big problem with this they'd mention it in the package insert list of side effects if only for liability reasons...

PeeVee, I'm hoping so much that this medicine might be your miracle drug, or that one way or another you will find your miracle soon.

Blessings,
Lori

[akrose]

hi sharon and lori, was great to talk to you sharon the other day, it is so nice to hear the voice of someone who knows what this feels like and is recovering. I am also doing better. some days, like yesterday, i feel great, no pain, don't even feel my urethra, then there are other days, where there is a slight burn, until i empty my bladder, then it goes away. i started almond milk- yuk, don't like it yet, but will keep trying it. i may be one of the people that the cytotec may take 3 months to get to remission, i am around one month now. also i am not running up and down hospital floors anymore, have a sitting job and that is a relief. They called me from National Institutes of Health yesterday, and have enrolled me in an IC study, even though my cystoscopy/hydrodilation and KCL test were negative, they said my symptoms sound like ic. They are studying a protein found in the urine of ic pts, once they identify the protein, they can then work on the cure - to reline our bladders and urethra, they said within the next 2 years it will be here. I am doing my part to help. On April 1 it will be one year for me, that is the first day I woke up with an urgency to urinate. I think alot about how much better my life was before that day, and I wish I could return to that time. your friend, aileen
sharon - if you want to call tonight, please do.

[kimmichele]

ak rose do you have the number of the folks a NIH. I'd like to find out more about this protien.
Thanks
kim

[icsonja]

HI all, just checkin in, I cant start the cytotek again until the nureosurgeon stops the steroids I'm on for my herniated discs, so I see him on the 7th, so hopefully I will get to restart the meds. I could sure use it, the stress of my back and my family has all had the flu has put me into a bad flare. So I'm just hangin on till I can get over this bump.
So happy for all who are seeing improvements!!!! And so very proud of ANYONE who is taking this chance to help themself and ALL of us along with you!!
TOGETHER we are an amazing group, I am in awe of all we have accomplisshed thru sheer determination and desire, I am honored to be in this group. Bless you all.
Sonja

[Baba Yaga]

Thanks IClori for your concern. I'm also posting under Baba Yaga's thread under Other Treatments in response to the polls.

Thank you PV!

Everybody else do the same if you haven't yet, and I'll try to consolidate the info by early next week.



Try the Vanilla Almond milk, if you haven't, Almond Breeze is sweeter than Pacific brand. I like Pacific Vanilla and plain Almond Breeze best, I think.

[Butternut]

It sure would be interesting to see bladder linings after a few months of being medicated with Cytotec.

[Njul]

Hello Everyone --

Firstly, I'd like to say MANY CONGRATULATIONS to Lori, Butternut, Aileen and others who are benefitting from Cyrotek. I keep my fingers crossed for ICSonja, Violet and Melinda-- that in time it will work for them.

Secondly, let me introduce myself. My name is Nancy and I was dx with IC by my PCP about a year and some ago. It was not really bothersome, for about three evenings I would have to pee every ten minutes one or two hours before I went to sleep. It was really just annoying and since my pcp told me that there was no cure or treatment, I didn't think much of it .... until this January when the flare -ups started and at times I was peeing every 1 -3- 5minutes/hour. At first they put me on biacin (antibiotic, sp??) then pyridium then Cipro --- everything worked for about a day and then the efficacy wore off. Then I was put on Detrol LA and that worked okay for about two days and now I am on Oxybuntin anywhere from 5mg to 2.5 mg tid or qid depending on how I feel. Actually, I am really dosing myself, because the urologists I have seen have not been very helpful.

At this time, I am on free care (have just had a very bad winter physically) so my urologist selection is limited. The clinic I go to is a teaching clinic so only the residents work w/pts. At first I was misdx with an overactive bladder and even though, at the time, I requested a cytoscopy (to check for IC) and an IVP and ultrasound to rule out kidney stones, the dr. decided not to do this. And she decided I had OAB without even doing a simple bladder exam. I then had to get a second opinion (pd. out of pocket) and he said most definitely it was IC. This doctor happened to have trained the first doc who misdx me (go figure!!) and he was extremely surprised to learn her dx!! Anyway ... yesterday I went to see my acupuncturist and whatever she did caused another flare plus I took some Argonot Plus and I think that affected me too. I am trying to get through this flare, but as you all know, it's really hard and at times you feel so alone.
I will be going to Urology Associates at U of T on Wednesday March 16th -- I have an appt with Dr. Ragi Wiygul -- I hear she is wondeful and look forward to meeting her.

Reading through this thread, it appeared to me that both ICLori and Butternut are both long -term, long-dx, many-tx ICers. I know this is a long shot, but could it be that all of the other failed and semi-successful txs prepared their systems for medication? OR is it just as a naturopath described to me that at some point, because of antibiotics, other meds and the environment have broken down our mucosal membranes in both the stomach and the bladder. He says what I need to do is rebuild the mucous membrane lining in those areas so that the bladder neurotransmitters and the urine will have cushoining between them, which will make the bladder less irritated, etc. That being said, because this theory (mucosal membrane lining)makes the most sense to me I would like to try the Cyrotek before anything else. Everyone seems to be on so many medications, it's really overwhelming --- especially since I have really only used wholistic and natural remedies in the past. Oh, I have also been dx with asthma and allergies/allergy induced asthma -- again, it's just overwhelming, especially since I've always been relatively healthy.

One last thing, and I am sure everyone has run across this, it's amazing the lack of knowledge, insight, intuition that many of these clinicians have. When I was first prescribed the Detrol LA -- the nurse wasn't sure what to do and (after going to the bathroom 2x in half an hour) I was the one telling her to give me the damn Detrol LA already (and I only knew about it from the tv commercial). Also, my allergist truly believes that allergies have nothing to do with IC (don't doctors share information??). Anyway .... I could go on and on and on ... as I am sure everyone could.

I have a few quick questions: is the newly acquired lower back pain I'm feeling (about a month) associated with IC?; 2. can you take oxybuntin (ditropan brand name) if you have asthma?; 3. how come,all of a sudden, this occassional slightly annoying illness has become the focus of my life, and, 5. finally will it ever end?

Sorry about the length -- unfortunately I can only discuss this in a lengthy way.

Good luck to everyone with this disease and I will keep my fingers crossed and say a word to the wind for ICLori, Butternut, ICSonja, Violet, Aileen and others taking Cyrotek.

Nj

[Njul]

Hello all,

Nancy again, I just realized that I wrote Cyrotek when I meant cytotek.

[violet]

Hi, this is violet, I think the cytoter is kinda helping me. I havent` had a flare in a few days. To day my urethra has not hurt. I could feel my bladder but it wasn`t pain. It was a feeling only. Yesterday I went shoping and my urethra started hurting so I took 2 ulrams and they helped. I will not give up.

[akrose]

Nancy- don't give up. most urologists are really good with prostate problems, kidney stones, but when it comes to women and the bladder- many are lost. so forget the detrol and oxybutinin- they are worthless. get on cytoteck as fast as you can- 200mcg po every 8hrs, and start taking it around the clock. don't waste time with accupuncture and other naturopath stuff, just take the stuff that works and slowly you will feel the pain leave, and you will begin to once again think about other things. don't go to a bunch of doctors- as waste of money- just find one that is good and open minded- and get started on this med.

[Njul]

Thanks Aileen, I really, really appreciate your support. I have already sent the cytotek information to my pcp and her np --- but of course the pcp is really too busy to spend the time to listen. It appears that I have the severe form of IC -- just beginning to get on again, off again burning in the groin area , which I have yet to experience -- YIPPEE!!!!!! -- wouldn't want to skip an affected area.

The problem is I don't have an urologist, so hopefully the information I sent will convince my pcp. If not, I will push the subject, because she knows the bad luck I've had with her urologist colleagues.

I have a question --- does anyone else experience acid reflux? I believe I have this now: I am burping all the time; it feels like there is a bubble at the base of my throat; my throat and upper chest area feel inflamed and it's difficult to swallow things like cookies. I spoke to the allergist and am now off the flovent, could this be the oxybuntin? I don't believe it's listed as one of the side effects. I can literally feel the acid in my mouth.

My goal is not to go to a bunch of docs and to educate the group and their supervisors who misdx me. They only dx for IC when everything else is absolutely, positively ruled out. I told I thought this was ridiculous --- why not dx and test simoultaneously. I also told them that by not testing, they are invalidating the patient's sxs and basically saying it's all in their head. Talk about backward thinking.

A friend of mine pointed out that, in most of medicine, it's still a man's world -- and I think she is right. All normal women are supposed to pee 1 -3 -5 - ten - ... minutes per hour ....

Anyway, thanks for the support and I hope you are doing well and enjoying your new job.

I am rooting for everyone -- especially those who have lived so long with all the pain associated with this disease and who have worked so hard for relief and/or remission.
My hat is off to you all, I hope I am strong enough to follow in your path.

Cheers,

Nj

[Njul]

Hello --

Is there a specific brand of glucosamine anyone can recommend. I have the Trader Joe's here and it has beet root (for color) and stearic acid -- and I'm not sure if I can tolerate them. I am afraid to try, because I just went through a bad flare -- it's weird -- I am good for two days and then flare --- good for one day and then flare, has this happened to anyone else?

Nj

[ICLori]

Hi Njul, welcome! I'm sorry that you've had inconsistent treatment from doctors. The problem is, right now, doctors each have their own favorite treatments, and there does not seem to be a "set in stone" kind of plan for treating IC. Many of the treatments available work for only some IC'ers and not all of us, so it can be a frustrating thing to try one thing after another, just trying to find something that works. That's what happened to some of us currently trying Cytotec - we already did the standard treatments, nothing helped, so now we are trying the more "far out" ones that have not been really mainstream but show some promise in small studies.

I would never recommend that a new IC'er start out taking Cytotec, actually, even though it's been good to me.

The reason for that is, it's still sensible, conservative medicine to use the accepted remedies first. Those are generally Elmiron, Atarax, and Elavil. Some also use instillations such as DMSO, although DMSO treatments seem to be less popular lately with the urogyns I've consulted. I would suggest trying those first to see if you get any help from those. And of course, it goes without saying, trying the IC diet to eliminate irritants from the diet so you can be much more comfortable. And some people find relief from using prelief or another calcium source with their food/drinks.

Once you've tried all the usual remedies for IC, if they don't work, Cytotec (and another new drug showing some promise, Cyclosporine-A, you can do a search on these boards to read about it) are other medicines that can be tried before you give up and live in pain or request bladder removal.

There are side effects with Cytotec (please read back through these pages - I know that's a lot of reading, but please do so because I don't want to cut and paste yet again the side effects of Cytotec and bore everyone) and it's especially dangerous to take if you are pregnant or become pregnant because it can cause miscarriage. Once you stop taking it, however, you can become pregnant with no problems, the Cytotec has an extremely short life in the body and is out of your system very quickly.

Now that I've said all this, I admit when I heard about your acid reflux, I thought - Cytotec might very well help with that, perhaps your doctors will opt to try it if only for that reason alone. And at that point, if you are prescribed that for that problem, you would be able to see if it helps your IC.

Not all IC'ers are helped by this. I can think of several who have dropped out due to things like increased bladder pain, fears that it may make endometriosis worse (it's not on record as having that side effect, but you never know what a drug might do to the body, anything is possible) and in the original study (again, please read back through the pages to see the abstract of the study which you might want to take to show your doctors because they'll never prescribe this otherwise) quite a few IC'ers dropped out due to the gastrointestinal side effects.

So this is not at all a medicine to be taken without serious thought by both patient and doctor, especially if a woman is of childbearing age.

Yes, I'm glad I'm taking it. I am glad for anyone else who has been helped by this medicine, too, and sorry for those who haven't. But I am cautious in recommending it for others, because of the risks and also because I can see from the study and from here on the boards, it doesn't work for everyone.

Blessings, and welcome, you'll find so much good info here on the boards and good support,
Lori

[Vicki]

Njul- I was once a patient on Dr. Ragi. She is wonderful and compassionate. Unfortunately, I live in another state and she recommended a doctor in my home state to try the interstim for insurance purposes. It was half the cost to be treated by an in-state physician. Being that the interstim was $25,000 that was huge! My IC seems to have progressed like yours. It does become the focus of your life. However, once you find a good cocktail of medications to take you will probably be able to reduce your symptoms to a level that is tolerable. Granted it may not be perfect but you will learn to cope. I cannot deal with the pain off of meds any more. It is just indescribable both physically and mentally.
I tried cytotek and it seemed ot be helping when I got a large cyst on my ovary. I had to stop the cytotek and have surgery last week. I just got back and once again I am eaten up with endometriosis. My small intestines were adhered to my bladder. Maybe I will get some relief now that everything is out of me. I am trying to make it without hormones. Best of luck to you. -Vicki

[Njul]

Thanks Vicki and also thanks to everyone else on this entire site. Without your prior expereinces and knowledge, we would all be lost.

I am glad to hear so many good things about Dr. Raji. I would like to meet an urology doc I could trust --- that alone will be comforting. Do you think she would consider Cytotek?

And thanks again to Lori -- I appreciate all of your advice. I mentioned to my doc that maybe we could try cytotek for both the acid reflux and IC --- let's see what she has to say.

Cheers -- Nj

[Butternut]

Njul
I have had acid reflux a LOT. The Cytotec is sure helping with it but at times if I eat something with much sugar in it, or bread, or coffee, I end up with some acid reflux anyway. But not as bad as it was.

[Njul]

Thanks Butternut --

Do you take Prilosec? Does it help? Does it often feel like something is lodged in the base of your throat. Last night, the doc on call, advised that I take some Tums for immediate relief and then Prilosec. It seemed to help. I hope you are still doing well on the Cytotec.

Nj

[Butternut]

Since beginning Cytotec I have not taken anything else for acid, except occasional Tums, just in case, after drinking coffee. Cytotec helps protect the linings so the irritation should improve. For me, it has.
I have thyroid nodules and when I "felt" something in my throat, I had an Ultrasound which found the nodules. I am not saying that you have nodules, I am just telling you about my experience. If you have had a lot of acid up into your throat, it may have irritated those tissues and that may be what you are feeling.
Good luck.

[kimmichele]

Thanks to Lori, butternut and others who are better and keep posting. many times when someone gets better they want to forget the whole IC experience. so thanks again for keeping us posted.

[violet]

HI, this is violet. I do think cytoter is helping. I have not had any pain for 2 days. I sometimes feel alittle burning but just for a minute or much less. The amond milk didnot help at all but now it has stoped burning so I don`t need it. I am so happy I hope it continues to help me I will keep taking it. I read on this thread that you are susposed to take it every 8 hrs. Is that correct? I will do that if thats what you are susposed to do. I now take it 3 times a day at meal times. And all my gastro symptoms are almost gone. I drink ginger tea if my stomace feels funny just to be more comforable. Has anyone tried Buchu , its an herb, for burning. I still want to try it just in case. Thank you.

[MelindaP]

Violet,

When you say it has helped your burning, do you mean urethral or bladder burning? I tried the almond milk for my urethral burning but it did not seem to help. I am so glad it has helped you!!! This is wonderful news!!! I am really so excited for everone here that cytotec is helping!

Melinda :)

[ICLori]

Good for you, Violet! I am hoping that at least a fair percentage of those who try Cytotec, will be helped. Oh, the truth is, I wish it (or some other drug) would magically cure everyone, LOL.

Blessings,
Lori

[Butternut]

I need to tell you all that I have found that I can't eat much salsa. So, tomatoes are still a problem for me, at least somewhat. Or maybe it was the peppers in the salsa. It was "medium" not "hot". The next day I noticed lower abdominal discomfort and some back pain.

[blondie45]

Hi-
It is great to see that so many people have had so much success with this. I am still reading everything and printing off some stuff. Hopefully soon I can get to my urologist to see what he says about trying Cytotec. I am just not too optimistic because I happen to have a urologist who anytime I have asked for something new or that he is not familiar with says I don't know anything about that, so I end up not being able to try it. I am just not sure how he will react about trying this, but I will go in and talk to him face to face instead of calling in to ask for it.

I cannot believe this has not been discovered yet and trials are not going on for this!

[kimmichele]

While there is only one study on IC and misoprostol in humans, the cancer treatment researchers have been looking for a way to avoid the cystitis that comes from cytoxan(cyclophosphamide) a drug for lymph cancers.
Here are two rat studies on cytotec (misoprostol):

[If you google national library of medicine, the second title is for pub med. I searched pub med abstracts and found some articles on cytotec.]

"sustained intravesical drug delivery using thermosensitive hydrogel, by Tyagi, P; Li, A; Chancellor M. De Groat, WC;Yoshimmura, N.; Huang, L. Pharm. Res. 2004 May; 21 (5);832-7. This study instilled misoprostol in rats that had been induced into cystitis using a cancer drug (cyclophosphamide) in a thermosensitive hydrogel. The purpose of the hydrogel was to keep the drug in the bladder longer, thus avoiding the problem of drugs staying in the bladder only until the next urination. I thought it was an interesting possibility for the people who say that misoprostol didn't work.
*Cancer drugs cause cysititis inflammation of the bladder. Some researchers are combining miosprotol with the chemo drugs to alleviate cystitis.
*The rats in this study showed sifnificantly reduced frequency of urine voiding as compared to rats instilled with saline.

From the abstract: "Histological examination of the urothelium showed near normal morphology in rats instilled with misoprostol in hydrogel, whereas extensive tissue damage was observed in rats instilled with saline" (the placebo).
"Conclusion: Our study showed that PEG-PLGA-PEG polymer could be used as a viable sustained drug delivery system for intravesical therapy of diseases of the bladder such as cystitis using misoprostol."

Another abstract: J Urol. 1986 Aug; 136 (2): 497-500. "Evaluation of misoprostol cytoprotection of the bladder with cyclophosphamide (Cytoxan) therapy. " Gray, KJ;Engelmann, UH; Johnson, EH, Fishman, IJ. "male rats receiving misoprostol in conjunction with cyclophosphamide were found to have a reduction in ulceration, inflammation and edema of the bladder walls as compared to those threated with cyclophosphamide alone. The abstract didn't say how the rats were given the drugs.

"Misoprostol therapeutics revisited" Davies NM, Longstreth J, Jamali F. Pharmacotherapy. 2001 Jan; 21(1): 60-73. Discusses all the uses of misoprostol. "Misoprostol enhances glycosoaminoglycan systhesis in cartilage after injury." "It works against drug-induced real damage, interstitial cystitis, lupus nephritis, and hepatorenal syndrome." "It synergized antiinflammatory and analgesic effects of diclofenac or chochicine and has been administered to treat trigeminal neuralgic pain." etc.

[kimmichele]

Butternut,
I wouldn't push it with salsa, alcohol and some hi risk foods. You need to give your bladder lining time to heal. I would still try to eat an alkaline diet for the most part. You are so lucky!!
Kim

[kimmichele]

Here is another study showing how misoprotol may help the bladder in the role of preventing an allergic reaction:

Am J Ther. 1995 Oct;2(10):749-754. Related Articles, Links


Misoprostol Inhibits the Cutaneous Late-Phase Allergic Response to Antigens. Results of a Double-Blind Placebo-Controlled Randomized Study and an Investigation into the Mechanism of Action.

Alam R, DeJarnatt A, Stafford S, Forsythe PA, Kumar D, Grant JA.

Division of Allergy & Immunology, Departments of Internal Medicine Pathology The University of Texas Medical Branch, Galveston, TX, USA.

We investigated the effect of misoprostol on allergen-induced cutaneous immediate- and late-phase allergic reactions in a double-blind placebo-controlled randomized study. Sixteen dust-mite-allergic patients received misoprostol (200 &mgr;g) or placebo and then had skin testing on two different days. The immediate- and late-phase skin response was monitored for 6 h. Skin biopsy was obtained from five selected donors at 5 h. In vitro studies included the effect of misoprostol on eosinophil chemotaxis, eosinophil survival, basophil histamine release, and cytokine production by lymphocytes. All subjects developed an immediate wheal reaction and a late-phase induration in response to dust-mite allergens after taking placebo. Misoprosol selectively inhibited the late-phase but not the immediate-phase response (p < 0.05). Histologic studies revealed a trend toward a reduced number of inflammatory cells in the skin dermis after misoprostol treatment. We also investigated the mechanism of action of misoprostol in vitro. Misoprostol significantly (p < 0.05) inhibited eosinophil chemotaxis and the production of granulocyte/macrophage colony-stimulating factor by lymphocytes at concentrations greater-than-or-equal10(minus sign8) M. However, at significantly lower concentrations (greater-than-or-equal10(minus sign12)M), misoprostol blocked cytokine-stimulated eosinophil survival. Thus, misoprostol has potent antiallergic effects and blocks the cutaneous late-phase allergic inflammation.

PMID: 11854781 [PubMed - as supplied by publisher]

[purpleviolet]

This is all so interesting. So what about evening primrose oil or borage oil - I think they encourage prostaglandin 1? I did call Lane Labs one time about their product Natural Lining for the stomach (it contains something called Pepzin (sp)which is zinc l-carnitine or carnosine (I'm not sure which)) and is supposed to boost the stomachs mucus producing pumps. So I asked them if it could possible affect the bladder and they said no it doesn't affect other organs, but I wonder if they know that for sure. They probably didn't even think of bladders. I should e-mail them with a more formal question. I tried SAM_e a little bit, but probably not enough. That is another thing that is supposed to encourage GAGs so it is used for osteoarthritis and it is also an anti-depressant (also I think gotu kola for Gags). Why aren't some researchers looking into these things? Money that's why and patents. Does anyone have a clue if the people who respond to misoprostol have Hunners ulcers like the rats? Are the people who respond more allergic types, responding to atarax and other anti-histamines or less allergic types? If enough people respond to this drug then we would have to sort this out. And then what type of pain do people have? It seems many people have "burning" . I have stinging irritation, a little different than burning, and I don't think I have "spasms", but I feel sometimes like someone literally kicked me in the bladder/urethra. I feel strictured. Just some thoughts. PeeVee. interstitial cystitis cure. (for the sake of googlers)

[Baba Yaga]

I need to tell you all that I have found that I can't eat much salsa. So, tomatoes are still a problem for me, at least somewhat. Or maybe it was the peppers in the salsa. It was "medium" not "hot". The next day I noticed lower abdominal discomfort and some back pain.
Butternut, maybe this is the best of both worlds -- conditional remission together with reminders that you should not be consuming sodas, coffee, chocolate, sugar, high sugar juices, and hot hot peppers in excess?

[Shehorst]

Lori,

I have a question about Cytotec. I have been newly diagnosed with IC. I am 53 years old and have had a hysterectomy (uterus only). I have asthma and a hiatal hernia - the acid reflux really irritates my asthma. If I understand what I've been reading, Cytotec protects your stomach from acid by producing mucous. I've taken a drug called Protonix which blocked the acid in my stomach from coming up my throat but instead shot it out my bowels and most likely my bladder. The Cytotec should replace the mucous lining that the acid destroyed. I am also not having any more children so this seems like the drug for me. What do you think?

Sherry
:cat:

[ICLori]

Hi, Sherry, I think it might be worth discussing with your doctor - never hurts to ask him or her what he thinks! I know that not all people with IC will be helped by Cytotec, but a few of us have been helped, and the studies (thank you Kim for those wonderful studies on misoprostol!) seem to indicate Cytotec may be helpful to some patients.

It might also be useful for healing your stomach lining, maybe - I think the original use for misoprostol was to heal stomach ulcers, wasn't it? Then it ended up getting used for some off-label things like labor and delivery and that sort of thing.

Well, it never hurts to print off a study or two and take it in to ask the doctor about it. I think the more proactive we are as patients, the better off we are.

Keeping my fingers crossed for you, whatever you decide, and hoping for remission for you.

Blessings, Lori
P.S. Butternut, I'm so sorry you flared some with the salsa. Now, it may be that you might never be able to eat salsa again, I just don't know. But maybe you will be able to, maybe the longer you take this medicine, the better it will work. That's what I'm hoping for!

[kimmichele]

I took sam-e a long time ago. I don't remember if it helped. About the Pepzin: if the misoprostal was meant to help the stomach, and it helped the bladder, then maybe the Pepzin would too.
Maybe a protocol of evening primrose oil, sam-e and Pepzin would be in order. Of course, these may not be as safe as they are supposed to be especially if taken at high doses. But it is something to look into.

[purpleviolet]

Hi Kim, I agree - if misoprostol helps me, eventually I may try a combo like that to see if I could continue the improvement with natural items. I never thought as lemon juice as being helpful, but I may try cabbage broth.

[Franny]

I tried the Evening Primrose but it aggravated me even at a low dose.

[Butternut]

If anything irritates my bladder now, it seems to be just a day or two, instead of a week. Of course it's only been the salsa (tomato), so far, pretty much. So, maybe we can say quicker recovery time from a very short flare?
Cytotec has taken the total mental concentration on the bladder away. Being constantly conscious of the bladder is gone.

[MelindaP]

I know that feeling! I am constantly aware of my urethra, ugh! I am glad it is helping you!

Melinda :)

[blondie45]

Could those of you that have had success with Cytotec please let me know what symptoms you had that are feeling better and if any what symptoms are completely gone and how long you think it was before you noticed any change and/or improvement?

I am trying to get up the nerve to go see my urologist and ask for this but I am chicken that he will say no.

I have had my tubes tied so that should not be an issue with me taking this medication.

[ICLori]

Hi, Blondie, I won't repeat myself here as I've posted about this before (in this particular thread, as a matter of fact) and I really hate repeating myself - if you read through these pages, you will find the answer to all your questions! If, after reading through all of this, you still have questions about my reaction to Cytotec, I'll be glad to answer them.

Blessings,
Lori

[blondie45]

I have NEVER felt so unwelcome by anyone to this site than I was after the private message I just received from the above person. Sorry I imposed and will NOT ask again.

[ICLori]

Sorry, as I told you in the PM which was a reply to your PM where you stated it was too much work to sift through the posts, I just get tired of people asking me to spend my time sorting through posts to help them, when my time is (to me) just as valuable as their time is to them.

I have disabled my PM function so hopefully I won't have to respond to any further PM's asking me for this sort of thing. I don't mind people asking questions once they have read the messages. What I DO mind is people presuming I have nothing better to do than to read through previous posts, copying and pasting for them, just because they do not want to be inconvenienced. They want to inconvenience ME, in other words, because they feel my time is much less valuable than their time is, and I find that offensive.

Blessings, Lori

[blondie45]

I did not ever state that it was too much work to sift through all 300+ messages. All I was asking for was a simple answer as to your symptoms that were helped by this medication. I did not intend for you ever to go through all the posts and send me the informative ones. A pleasant 1 or 2 line answer would have been sufficient, otherwise if you are tired of everyone asking then don't respond. When I find things that have helped me I am more than happy to respond to anyone's emails to try to also help them. I try to be nothing but positive on this site in helping others and only ask for the same in return.

[ICLori]

I'll let you have the last word on this. I really don't care.

[ICLori]

Here's the bottom line for me: People, if you have a legitimate question about this medicine or anything else, after reading the numerous posts I have made and many others have made, I will be happy to try to answer your question.

If you are asking a question simply because you are too lazy to read the posts that I and others have already spent time typing in our efforts to help you and others, I am not interested in spending any more of my time and efforts on you. If that offends you, so be it.

I find that I'm becoming much less interested in these boards the longer I am well. Happens to most of us in remission I guess. I will pop in every once in awhile because I know there will be some who wonder whether or not I'm in remission (a legitimate question) and I will let them know if I am or not.

People have taken a lot of time and effort to record their experiences with this medicine, to show the side effects, to copy and paste articles from medical journals and abstracts of studies for you. If you are too lazy to read those posts and want instead for us to post everything again, whether on the boards or in PM's to you, you are being very entitlement-minded and, at least to me, offensive. I will not respond to requests for information already contained in this thread or other threads.

Blessings,
Lori

[blondie45]

Again I was not being too lazy (as you want to call it). When you post your good experiences here of course we are all interested in finding out how you are doing. I still do not think it was called for to get kicked and spit out by you when all I simply asked was what symptoms you had before you started the medication. Yes, as you said maybe you are feeling too good to help those of us that are not at this point. If you are going to take the time to answer an email I didn't know it was such as imposition to send 1 or 2 lines in an answer as to your previous symptoms. You have to remember though that not all of us (in fact probably most of us here) are not in remission and still feel absolutely terrible and ask questions in desperation seeking anything that may help. As you know, this disease is VERY unpleasant to cope with. Believe me, if I do get to take this medication and anyone wants to email me I would more than welcome their questions. As the saying goes if you don't have anything nice to say don't say it!

[ICLori]

Everything you asked me (and others for) is contained already in these threads.

End of discussion.

[Baba Yaga]

Oh, crud. This would have been averted if I'd already had my table together in the other subforum.

Blondie, I will soon have a table compiled in "other treatments" that has a little of the info you want in one post. Please go to "other treatments" and find my threads -- there are some posts there qith women reporting their experience too.

I too understand not wanting to repeat things/reinvent the wheel -- I was hoping to have my own threads not filled with too much chater, so I could update them easily. Lori is a really nice person. I think if you are calling this experience "disgusting" maybe you are having a generally "sensitive" day, like I often do. I can see your point too, as your question/request was innocent enough. I hope you two can chalk this up to a misunderstanding or bad day -- blondie you should stay involved in the dialogue too.

And you raise a concern that I was thinking about earlier today -- Dr.'s who will dismiss this new idea. (I even touched on the topic in my little call for data). I was thinking it would be good to rally the old ICers and men to consider if they want to try misoprostol, as they are the foot in the door for the rest of the population.
"C'mon doc, I'm already menopausal/post-hysterectomy/tubes tied/a GUY/whatever. This is an inexpensive(?) drug and not dangerous to me, and I can stop it anyway if I don't tolerate it. I might be interested in arthrotek as a pain killer anyway/arthritis drug anyway. I already have stomach lining issues (reflux? ulcer?) that could call for trying this."

Something along their pick of those^ arguments.

If it helps more people and its off-label use slowly grows, it will help more and more people who might have a tougher time persuading a doctor, like younger women who are on birth control or even celibate but still fertile, women trying to hold their families together but their marriage is strained over IC issues (this really gets me upset).

Although isn't elmiron itself contra indicated for pregnancy??????

[ICLori]

Thank you, Wendy. I think your compilation will be helpful to many.

I've just had it up to here (pointing over my head) with people who PM me asking about the side effects of Cytotec, what symptoms I had before starting it, how long did it take me to get results, and asking me to tell them whether or not they should try it (I'm not a doctor, and I can't make medical decisions for them...)

I can't come on these boards anymore without seeing several PM's asking me questions I've already answered (many times over, usually) in the threads.

I understand the reasoning. "Oh, that's too much for me to read through - I'll just ask this person what I want to know, that way I'll save time."

Well, it gets to be too much of an imposition when it happens over and over and over and over. And the bottom line is always that the other person would rather have me waste my time on them, than do the work themselves to find the answer in the threads.

Yes, it IS an imposition. And, no, I'm no longer willing to answer questions that I have answered before in the threads.

I've done enough. I've given enough.

Anyone who wants to try this, try it. If you don't, don't. No skin off my nose. If you can't be bothered to read through the threads to find out whether or not this medicine might help you, then you probably aren't all that sick to begin with.

Blessings and goodbye to everyone,
Lori

[akrose]

Lori- I understand completely and I feel the same, and I am a nurse. Just listen to us, all of you, just go to a doctor - find one, search until you find an open minded one- tell him you need to feel better and cytotec is helping us, get a script for Cytotec 200mcg one tab every 8 hrs, try it for 3 months, every day without missing a day, then write us back and tell us how much better you are. also, start exercising , i rollerbladed for 3-4 hrs yesterday, not a stitch of pain, i am going again today, do everything you can do to save yourself from this, don't waste your time asking us the same questions, just get on the med, start to exercise, decrease stress, find a calmer job and there will be a difference. and lori- you said the right thing. aileen

[ICLori]

Thank you, Aileen, you said it much better than I did. Everyone here is an adult and should be able to decide for themselves whether or not they want to try this drug. I get the feeling most people writing to me want me to beg them to take the drug or otherwise pay lots of attention to them.

Really I feel I don't owe anything to anyone. I've recorded what my experiences are, and answered questions. If something comes up that I haven't already answered many times before in these threads, I'll try to answer it. But if it's just someone wanting attention or someone wanting to avoid reading - nah. My time is too valuable, to me, to waste on that.

The person who was upset with my curt reply has posted before on this particular thread, so she's been following this issue for some time.

Blessings,
Lori

[Butternut]

I walked for half and hour and then rode my bike for a little while. I feel fine.

Try the Cytotek. Ask for the prescription! What have you got to lose, except the pain??? If they say no, try another doctor. I have not taken ANY pain medicine since starting Cytotek, except one Advil tab, because I had a headache! Cytotek might not help everyone but how will you know till you try? I am looking forward to a great summer fully expecting to remain pain free!!!!!!! I have already bought my garden seeds and am now trying to find my leaf rake to begin cleaning old leaves from around our house and flower beds. Get on with this wonderful and very short life! TRY.

[emilyrose197377]

Lori the dmannose didn't help me . I have had two uti and kidney infections since then. I am having a major uti and kidney infection now.

[ICLori]

I'm so sorry Emily :( Can they just keep you on preventive antibiotics until things get sorted out? Do they have hopes that the Interstim will help more in time with the retention problem, or are they saying, this is it? What do they recommend from here, if the Interstim isn't going to solve the problem totally? I'm sorry that you are having another infection, I know you must be getting very tired of them...one is bad enough let alone one after another... :(

Blessings,
Lori

[emilyrose197377]

yes they tried bactrim ds and macrodantin as preventives but it did not work. right now I am on levaquin and doxycycline for the infections now. eseentially the interstim helped because I can urinate on my own now. I couldn't urinate on my own at all before. they just can't keep my infections at bay. I see the uro on thursday maybe he will have ideas. I am asking for a cystocopy and a bladder scanner when I go in. I know this has lead to kidney problems for me. which he has to adreess as well.

[ICLori]

Oh, man, I'm sorry :( I hope so much the doctor has some good ideas to end these infections. There are so many antibiotic-resistant infections today, it's scary. Well, hopefully the doctor will come up with an idea that will work great and you won't have any more problems. I know doctors must have a lot of experience with this because of people who have their bladders removed and everything, having infections. There must be some studies done on this.

Blessings,
Lori

[Njul]

Many, many congratulations to those in remission because of Cytotek!!!!! I wish you all the best. It must be like a second lease on life, not constantly having to think about your bladder and urethra or associated pains. I wish you all long and happy remissions.

Nancy

[ICNDonna]

I am closing this thread. It has become so very long that it's difficult to read completely through it. Please feel free to start another thread on the subject of Cytotek.

It's very rare to have a thread with 400+ posts and it has become too long.

Donna