Finding Relief with Cytotec

[cableigh]

Well, I don't want to jinx it, but I do want to share it so here goes. I'm finding relief with Cytotec. My flare has been building over the past few weeks. Last week it was the worst it has been in years. I logged on to see what was new and being discussed. I looked at all the options and side effects of most of the current therapies and decided to ask my doctor about the Cytotec.

I will say I was very leery about the diarrhea side effect. My IBS has been acting up as well and I wasn't looking forward to making it worse, but at the point I was at the IC was my main focus and I needed to find relief.

My doctor was open to giving me the prescription. He said it was worth a try.

I've started slowly with only 50mcg 3x a day hoping to let my body get used to it. Wonderfully, I have noticed results at that low dose and will continue on it as long as it is helping.

Once I've been taking it for a while I will fill out the chart to add my information to the survey, but wanted to let people know that I have had success with this so far. Monday morning I was in tears it was so bad. Here is is Thursday morning and I feel somewhat normal again.

[hollipop]

That is so exciting! I hope others like you try this new treatment and have success! I'm going to stick with my regimen for now, but in a couple months I want to ask my doctor about this!

[MelindaP]

Yeah!!!! I am so happy for you!!!

If I may ask, what were your IC symptoms?

Thanks!

Melinda :)

[ellienor]

has anyone broken a pill of cytotek?
I have 100 mg tabs and i want only 50.

[violet]

Hi ellienore, I am on day 47. I think cytotex has helped .I no longer have bladder pain but I still have urethral burning and frequency. I just started taking cymbalta and veslcare for the frequency. I take all 3 and they are helping me more than the cytotex alone. I still have alittle nausea from the cytotex. I have sever IC. So it takes longer for me to get results.

[purpleviolet]

I broke my 100 mcg pill in half when I started on the drug. I used a pill cutter.

[ellienor]

cableigh:
how are you now? is it still helping?????

I am starting with 50 mg tomorrow morning. ( have to go someplace later today. )

[ICLori]

Just wanted to give an update. I came down with a genuine UTI (blood, bacteria, pus, nitrites, fever, the whole nine yards) about five or six days ago, and got put on Cipro.

I'm still not back to normal yet. I'm mostly back to normal during the day, but at night I am having some bladder irritability. Even with the Cytotec.

So I have no idea if this is just lingering irritation from what I was told was a "very bad infection" or if it represents a change in my baseline...but I thought I ought to let you all know.

I fear for the worst because every other time I've had a UTI, it led to my bladder being worse than it was before, permanently. So I'm really scared at this point my bladder might not get back to normal. I still have a few days worth of Cipro left to take, so of course I will take those until they are finished, but...I'm feeling pretty down about this now.

If I don't get back to having no pain with the Cytotec, I guess the next step is trying Cyclosporine-A.

Hope everyone else is doing better than I am.

Blessings,
Lori

[cableigh]

Sorry, I've been away. Someone asked about my symptoms. My worst symptom is the constant feeling of having to go. It's one level below thinking you will pee your pants if you don't get to the loo, but enough that it's all you can think about, very uncomfortable. I have pain but not a lot. Mostly at night I have pressure and my bladder almost pulses.

I have been able to survive for the past 15 years mostly with only Ditropan. Most drugs are too strong for me. I usually only take a 1/4 and never more than a 1/2 tablet at a time. I always take a 1/4 before bed.

Since I also have a bad neck, I have been taking large doses of Nsaids over the past couple of years. I think that it has finally done something to my bladder and that is what caused this big flare.

I was in my worst flare in many years when I logged on and found the discussion about Cytotec. Luckily I was able to speak to my doctor at an appointment for my daughter and he gave me a prescription. I started it two weeks ago today. I noticed an immediate result. Within two or three days, I felt so much better. And the stomach problems resolved themselves quickly.

I started very low with only 50mcg three times a day. Now I can take 100mcg two or three times a day (always with food).

Last night was the first night I have been uncomfortable in two weeks. And I think it was from eating two much sugar yesterday.

I'll keep you posted on my progress. I hope that others who are considering trying Cytotec have good luck with it too.

ICLori, I hope you get back to the good place you were when I first discovered your posts.

[ICLori]

Thank you so much, Cableigh, I hope that the good results with Cytotec continue for you.

It looks like this discomfort I am having might be the UTI coming back. My pain has been increasing over the last 24 hours, as well as frequency, and I am running a fever a little over 100 and that often means a UTI rather than an IC flare, for me.

I am going to the doctor this afternoon and will ask him to take a urine sample to see.

I am hoping it's the UTI coming back, maybe not completely killed off from the cipro, because that would mean that maybe there's a chance I can get back to having good relief from the Cytotec.

Blessings,
Lori

[ellienor]

I dont know if it's too early to post this, but here goes.

I have been in a bad flair for about 5 weeks.

I started on Cytotek last thursday, 5 days ago.
did 50 mcg that day.
Had a strange feeling all thru my guts that night.. but i decided to keep trying.
next day 50 mcg 2 x per day.
Still stomach upset and felt like someone was sitting on my chest.
Next day, 50 mcg 2 x per day.. less stomach distress - AND

less bladder burning after urinating.
My diary on sunday says " Less buring now. Peed 12 oz with only 20% discomfort."

Yesterday, monday, I had the best day in 6 weeks. It started when the burnig after peeing stopped. The pain and burn left, but I still had pressure starting one hour after peeing. I could wait to pee for 2 1/2 hours, at which time I peed 2 cups.
Today, I didnt do my marshmellow tea in the morning and i have a very slight burn now ( I have not peed for 2 hours ). Not much at all.

I am sooo much better, but it could be from the marshmallow tea and the diet.
I am going to continue on the 100 mcg of cytotek for a week. Why up the dose? If I can continue to improve like this, I wont need more.
I am also taking 5 mg of atarax 2 x per day. and 2.5 mg of elavil in the evening.
I will post again in a couple of days.

By the way, there are "good" prostiglandins and " not so good" prostiglandans. ( the not so good ones are in corn oil, other vegi oils, and they induce inflamation if you get too much. )

The good ones are found in omega 3 fish oils.
So, I am also taking 1500 mg of omega 3 fish oils per day.
I use some olive oil on my toast, to balance this out with omega 6.
I figure why not help the cytotek with a natural prostiglandin.

ellie

ellie

[Oxana]

Hi Lori!

I'm so sorry you are having the symptoms again. I still thinking that it is UTI is giving you the problem. Can you ask your doctor to do broth culture of your urine? This way they can found someting. They also will know what kind of antibiotic will work for you.
I wish you started treatment and feel better soon. And, get back to having good relief from the Cytotec. :grouphug:

[Shehorst]

Lori,

Glad to see your back - but not with a UTI. I have been having major urethral problems and started taking 100 mg of Doxy twice a day - Cirpro does nothing for me. So far, my urine stream is getting stronger although I still feel urgency. I am drinking more water and I am fighting the urge to urinate. I only have enough for 14 days, but I am going to see my GP next week and a new gyne/uro so I am going to discuss the possibility of taking Doxcy for an extended time. I have always felt the the glands around my urethra are causing the bacterial problem. Also, the Elmiron is burning my stomach - I also have a hiatal hernia. I am going to see if one of them will give me Cytotec. I am really happy to hear that the Cytotec is working so well for you. After reading about Cytotec, it makes so much sense to use it off label.

Sherry
:cat:

[purpleviolet]

I wish my doc could do a broth culture - I don't know of any that do except for Dr. F. awhile ago. I don't feel too good on cytotec yet. In fact I'm in a flare and I having a regular culture done, which I know will be negative. I'm getting scared cytotec won't work. I've been on 600 mcgs. for about 2 weeks now and I'm getting a refill tomorrow. I hope it is not making my IC worse. I'm soooo glad it it helping some though and I will stick with it for awhile. Sometimes my gut feels a little funny, but bearable. PV

[celine]

Well, I must post also. I LOVE ICLori's posts.I read all of them.And went to my pain doc last week and asked for a script to start Cytotek.He was all for it when I showed him all your posts Lori. I had printed them out to show him. So, I have been on it for a week and a half. We will see.I am hopeing for a God Send with this med. I am on every strong pain med,elmitron,evail,etc.etc.And none of it touches the pain I have in my bladder and after I pee.So,I want to be in remission like you all who this medicine is working for.I just want to say-I am in remission........Thanks for all your posts from those who ARE taking cytotek.To learn and keep in touch. Celine

[akrose]

Lori - I still remember the day you wrote all of us and told us about how great it felt to drink a giant glass of lemonade- I was so happy for you, I could almost picture your smile. I got on Cytotec right after I read that. HOping and praying for you that your bladder comes back from this setback. Stay on the Cytotec, don't let this cause you to stop. I am now doing better -almost 2 months of cytotec, and last night was a great sleep, today no pain. Have added Butcher's Broom extract to my meds, my friend who has this is also taking it and said that it helped her.
The other thing - the Climara patch on my abdomen- 1xwk patch is really helping with the postmenopausal dryness to the urethra with progesterone cream once a day to the abdomen. So I think the most important think is praying to God and asking him to help us find our way out of this pain, then finding really good doctors, who want to help us- my urogyn said it perfectly- she said that she was going to help me so that this disease wouldn't 'dog' me the rest of my life. Of course - be kind to our bladders/urethra- nonacidic foods. I can take chocolate milkshakes without problems. Also, low stress. so just keep looking upward and doing our best and we will get out of this - i believe it.

[maryla]

Hi everyone!

I was just wondering what dosage you all are taking of the cytotec? And what is the usual dosage? Thank you! God Bless!

[akrose]

cytotec 200mcg every 8 hrs

[maryla]

Thank you akrose,

Also, those of you that are taking cytotec, are you also taking nexium or any other digestive med for GERD or any other stomach problems?

Thank you all in advance!!

[ICLori]

I'm also taking 200mcg every 8 hours. I'm not taking anything for digestive problems, but I've been very lucky in not having had bad gastro symptoms with cytotec.

P.S. This is neither here nor there but I experimented last night with dabbing dimethicone (anti-chafing gel) on the outside of my urethral opening, and within a few minutes, about 75% of my discomfort was gone. That leads me to believe my current problems have more to do with my urethra than my bladder. Still having discomfort, but dimethicone is my new friend.

[purpleviolet]

I take 600 mcgs a day divided into 3 200mcgs dosage. Drank some wine last night. That was a mistake. Still waiting for remission. PV.

[purpleviolet]

IClori - I read about dimethacone gel. It doesn't seem for internal use (thought I did see a form that said is what for acid indigestion so I'm confused). It said not to put on anything like a cut. Do you think it could get inside you and be bad? PV

[maryla]

Thanks everyone, this site and ALL of you are truely a devine intervention. I'm taking all the info about cytotec today to my uro, wish me luck!!!!

God Bless & love to all

[ICLori]

Good luck, Mary!

PV, not sure - I know GasX and some other remedies contain dimethicone so it's safe to take internally that way, but...shrug...who knows? Seems to be very soothing to my outer area though.

I hope you feel better soon - wine can really make your bladder hurt if your lining isn't in good shape...

Blessings,
Lori

[ellienor]

MARY:
In a recent ic newsletter, there was a lady who says when she took 20 mg pepcid ac, 2 X per day, her ic went away in one week.
did you see that story?

I have been weening off of nexium, and it seems thats when my ic got worse.

eg

[twiggy]

I have an extremely fickle stomach/bowels. I worked my way gradually up to 800 mg of cytotec and had no problems. I always take it with food. Started with 200 mg/day for five days, then went up gradually.

[ellienor]

well, one week since my last post and am improving every day!!
I am so excited!! This is day 12 I think. For the last 2 days I have felt 90% normal most of the time.
Yesterday and today I have peed every 3 hours or so. NO pain or extra pressure at all.... only a normal feeling of having to pee.

I am adhering stricktly to the diet. That last flair was not worth anything to taste good. I am keeping a strict food and activity diary so if things do go bad again I will know why.

I am taking 100 mcg per day of cytotek now for 12 days.

I am tempted to up my dose to 200 per day, but wont unless things go bad again.

OH, my stomach is noticably better too. I have had stomach pain ( gastritus ) for 9 years. This is the best I have felt in years. I have gained 4 lb in the past 2 weeks too. Up to 130 now so I will need to cut back deliberately now!

[ICLori]

Awesome, Ellienor, hope you keep getting better and better! Today has been a good day for me, too, bladder-wise. It gives me hope!

Blessings,
Lori

[ellienor]

Blessings to you too Lori! Just a minor setback.

I have also been doing some affirmations:
I believe my bladder is healing.
I believe my bladder is healed.
Thank you God, for healing my bladder.
I love my bladder and it feels so good to be healed.

The mind controls the body somehow. I saw a tv show where theese guys meditating brought their heart rate down to 20 beats per minute with their minds.
I am going to take a meditation class soon and learn all about this. But we must "believe" first, then it will appear.
This is the philosophy of many of the great leaders.
The body is always trying to heal itself. The scientific community knows this. We need to give it a spiritual boost ourselves too.
I believe it for us all, because it cant be any other way. The body is self healing. If we cut ourselves, a week later it is healed up. We dont have to tell it to heal, it just does. ( if we dont break it open ).

I think the drugs, like in the cytotek case, help the body along. I myself, don't like the idea of taking too much of it though, because then it makes the body toxic, and could de-sensitize the body to the subtle help it needs.
Small is better, and see if that is all the body needed.

Hope for everyone!!

[ICLori]

Keeping my fingers crossed for everyone! I had pain again last night. If this doesn't kick back in soon I'm going to go ask to try Cyclosporine-A. I'll give it until the end of April or so.

Blessings,
Lori

[Baba Yaga]

Ellienor, that is really great that you have experienced some improvement with even more than just your IC. I hope everyone continues to get better.

Lori -- is the frequency, duration, and severity if your pain improving since you started antibiotics for the uti? I hope so. Could you PM me and let me know your age? I am wondering what the likelihood is that a 43 year old woman will get argument about the cytotec for the same reason you got resistance to it from some of your doctors.

[purpleviolet]

Just reporting status quo. Not tooo bad, not tooo good. Just so-so as usually. I will stay on cytotec for 3 months and then what? PV

[maryla]

Hello, everyone. I started cytotec Tuesday, 200mg 3x daily. This is the last thing to try so we are all praying. My uro wants me to go to Cleveland Clinic to a uro who specializes in ic. if the cytotec doesn't work. I also went to a reflexologist Tuesday who claims to have treated other ic clients. So Lori & Annie2 if you want the info, I would be glad to email it to you. She told me to give her 2 weeks and if I'm not better, then she recommends Cleveland Clinic as well. She is very hopeful that she can help.

Lori, I hope you are feeling better! How long did it take for you to start feeling better on the cytotec?

Well, I need to lay back down.

God Bless to all!

[maryla]

OH, did you all have nausea when you first started cytotoc? Thank you!

[ICLori]

Hi, Mary, I got almost immediate relief at first with the Cytotec, no nausea, but since my UTI, I'm having bladder pain at night again and I'm very frustrated. I don't seem to be getting better. I'm off antibiotics now and the UTI is gone, so I should be better, but I'm not. The urogyn said I should expect to have a flare for at least 3-4 weeks, maybe longer. So I'm trying to be patient. I think if I don't feel better by - maybe the end of May or something - I'll see if I can try Cyclosporine-A instead.

Blessings,
Lori
P.S. Baba Yaga, I'm 44 (almost 45) - I think any woman under the age of about 55 (anyone who has not gone through menopause yet in other words) is going to have a hard time getting this medication from doctors...

[cableigh]

I am 41 and I had no trouble at all getting Cytotec. I got it from my family doctor actually as I was waiting to get into the Urologist. Had my appointment with the Urologist on Wed. and he was thrilled that the Cytotec was working, he hadn't heard of it for IC before. He happliy gave me a refill on the prescription my G.P. had given me.

My G.P. was actually surprised when I told him people had been having trouble getting Cytotec. He said it is a medication that has been used for years for ulcers, and he has prescribed it many times for that problem. You have to be aware of the dangers of any drug, and act accordingly while taking it.

[maryla]

Hi Lori,

The same thing happened to me. I had a few days where I felt almost normal then at the beginning of March I got a bladder infection, took 2 weeks of antibiotics and still feel horrible. The reflexologist said that my bladder, kidneys, and pancerous sp? were all inflamed. She also recommended a topical cream "Pro-G-Yam-500" to put on the vaginal and rectal area that is very soothing.

This is day 4 of cytotec. Still not releaved! Thank you all! God Bless

[fashionmum]

My main problem is the urgency and frequency and sometimes the burning after you pee, but that the main problem I would say is URGENCY and feeling full all the time.

Would you say Cytotec would help with the urgency.

Thanks.

[maryla]

Hi Mary,

I too feel full all the time, urgentcy frequency, bladder pain, uretha burning, and rectal pain. I am hoping it works for all. Good luck......God Bless

[ellienor]

Mary, yes, yes.

I am impressed with the lack of urgency in the last weeK!!

It is now 5:30 and i have not peed since 2:30. I have not drank alot of water either,, but still.....I dont really have to go now.

On another note, i ate some chocolate ice cream at 2:00 and it has not caused urgency or burning!! Holy molly!! Ahhhhh lah looooo yaaaaaa.
I am not going to push the issue, no more iffy foods for a few days.
I am going to leave well enough alone, but it was a test.

I think I am going to up my dose to 200 mcg per day next week.

If you want cytotek, maybe complain to your md about heartburn and stomach pain. Tell them you think you have an ulcer.

[maryla]

ellienor, THAT IS INGREDIBLE 3 HOURS WITHOUT PEEING? WOW!!!!! I'M SO GLAD TO HEAR YOU ARE DOING WELL! KEEP UP THE GREAT WORK!!!! GOD BLESS

[purpleviolet]

Has anyone actually had a real increase in capacity? I'm not feeling too great due to diet, I guess. PV

[Meemer]

Hello All:

I've been lurking & watching this subject and have a couple of questions. Do all of you who are currently taking Cytotec have IBS or some kind of stomach issue? Also, is this medication related to a topic I was reading that a poster by the name of Norman brought up under different topic? I just want to know if the condition he referred to and this medication are related.

I'm currently using prednisone to control my IC. I've had IC for a long time and have been through the ringer with instills, surgeries, all the meds... Needless to say, my body cannot take too much more. I always develop nasty reactions to medications and it's only a matter of time with the pred. Hydrodistentions no longer work and instills have never worked for me. In fact, they make me 100x worse. I'm definitely looking for other options.

Thanks.

[ICLori]

Hi, Meemer, it is the same drug Norman talked about. I don't have IBS or stomach issues myself, but many IC'ers do.

If you aren't happy with the current prednisone treatment, you might want to talk to your doctor either about Cytotec or about Cyclosporine-A (that has shown great promise in several studies used on IC...)

If you do a search on the boards you will bring up several interesting studies on Cylcosporine-A.....

Blessings,
Lori

[Meemer]

Thanks ICLori. I have already tried cyclosporine-a and it made me very ill. That's why I'm taking the pred.

>Meemer

[ICLori]

Oh, my goodness! Just curious, what happened when you took the Cyclosporine-A, did you get sick to your stomach or...? I have heard that you can get nausea with it. Just wondering what your symptoms were.

Blessings,
Lori
P.S. I didn't have any pain at all today or so far tonight. Not sure if it will continue.

[blondie45]

Well now that I think about it I am starting to wonder if the stomach pain I am having is a side effect of the Cytotec and not my IC acting up. I am having terrible stomach pains today. I think I will either have to go back down to 100 mg 3 times a day or give up on the Cytotec already. I hope it continues to help the rest of you that it has been helping. I may have to go back and give Elmiron another shot, who knows.

[Meemer]

ICLori:

I had severe nausea, severe headaches and terrible fatigue. I do not have IBS or any other gastro issues. That drug just wasn't for me, but the pred. has been extremely effective for me. Right now, the main side effect I've had is weight gain and it can be a lot depending on how long it's taken. Last year, I was on it for six months and gained 20 lbs. I lost 11 of it and just recently had to go back on it for a shorter period of time. This time, I gained about six pounds. Prednisone also revs me up and banishes my depression, so I love the happy energy I get from it! However, after you stop taking it, your weight gain stops, but the happy energy is gone, too.

Prednisone is definitely not for everyone. It can cause diabetes, osteoperosis, cataracts, hypothyroidism, among other things. When getting off of it, one must proceed very slowly. An adrenal crash can be deadly, so I work very closely with my doctor.

Since I've tried everything out there, I have few options. I have an IC researcher as my physician and we work together and are creative. I stumbled upon prednisone when I had a bad reaction to codeine. I developed serious breathing problems and landed in the emergency room, barely able to breath. Up until then, I had taken codeine for years, then boom. That's how my body works. It doesn't like it when I take medications consistently. I've been on Amitriptyline for six years. I now have tinnitus from it and cannot hear over the buzzing in my ears if I take over 5 mgs.

Ain't life grand.....

[ICLori]

Hi, Blondie, it could be the Cytotec, for sure - lots of people have had stomach pain from it. Usually it resolves within a couple of weeks but it can be awful while it lasts. Some people have had their doctor write them prescriptions for something to stop the stomach pain, others have tried to make sure they always had a full stomach for those two weeks. Next time you have some pain, try eating a few crackers or a piece of bread and see if that doesn't help. Hope you feel better soon!

Hi, Meemer, sounds like you've really been through the wringer with all these meds, ugh...I hope that they find a cure for IC soon....

Blessings,
Lori

[blondie45]

Lori-Thanks. Hope you are still improving after your UTI. I am still thinking that is why I am not back to normal. The Cytotec has been doing a good job on the IBS constipation though didn't do anything yet for the IC pain. I only took one yesterday morning and am taking a break for now from them as the stomach pain was absolutely unbearable, almost like the contractions for having my kids. I wonder why some people have stomach problems and some people don't seem to have any side effects. Must work almost like the Elmiron.

[erk]

I'm so confused!!! I didn't know that you need an RX for cyctotec. I thought it was an herbal remedy available from a mail order company. And what is dimethicone? Is it a prescription cream and how is it used? Uretheral burning is so painful. I can hardly sit down at times.

[Ruth France]

I have read the whole four pages of this forum. Can somebody explain to me axactly what cytotek is and what it is prescribed for specifically and what the side effects are?

Thanks

[Shehorst]

This should help in explaining what Cytotec is http://www.drugdigest.org/DD/DVH/Uses/0,3915,459|Cytotec,00.html.

Sherry
:cat:

[ICLori]

Hi, Erk, you are thinking of Cystoprotek I think which is herbal. Cytotec, which is spelled kind of similar, is a prescription drug.

I am totally depressed. I'm still having pain in the evenings and had a big flare when I tried to take Motrin recently for menstrual cramps.

I give up. Maybe I will try Cyclosporine-A next. I'm getting the feeling I'm probably going to end up having my bladder removed after all. :(

Blessings,
Lori

[maryla]

Lori, Iam soooooo sorry to hear you aren't doing better. I too just can not get over a uti. The frequency is awlful. I'm not getting any sleep. I started the cytotec 2 weeks ago as well as herbal meds. PLEASE before you have your bladder removed go to my reflexologist. I have to say I am feeling a little better. I still hurt, But 2 weeks ago I felt like I was lifeless!

My reflexologist said to give her some time to help me heal before I go to Cleveland clinic, So, I decided to!

Just email me and I will be glad to give you the info! Thanks to all...God Bless

[ICLori]

Thank you so much, Mary - I'll keep that in mind if the cyclosporine-A doesn't work either. I'm starting to think nothing will work for me. Maybe I really am crazy and that's why none of the medicines work. Well, except that the cystoscopy photos show something actually physically wrong. I guess that means I'm not crazy. But I just don't understand why all these meds work for so many people but they don't work for me, or don't work for very long.

I'm glad you are feeling better, I hope you get better and better every day!

Blessings,
Lori

[maryla]

Lori,

You are not crazy! I too feel the same way sometimes! This disease sucks! I am having another cysto and hydro tomorrow, I pray it helps with the frequency! I am just exhausted! Hurting and exhausted just does nothing for the spirit! Blessings to you too!

[blondie45]

I have to admire your attitude that you will keep searching until something works. Please if you choose the route of bladder removal talk to as many people as you can that have had theirs removed to see if it helped because years ago when there used to be an IC support group in a big town near me a lady was there that had IC and had her bladder removed. She said that she was still in pain and it did not help, which is totally weird since we know that doctors can see things on the walls of our bladders. Go figure! I started taking Elmiron again and have only been on it a week. I know it is too soon to say I am feeling better but I think I am (maybe it is in my head cuz I know this medication is suppose to work). Hope you find something that helps your pain soon. I had tried the Elmiron before a couple times but always gave up right away as I guess I am a person that wants immediate relief. I am going to stick it out this time if side effects don't start that are unbearable.

[purpleviolet]

Hi Lori,
I'm bummed cytotek stopped helping you. It hasn't helped me yet. My capacity is low, I still get flares. What gets me is that it seemed to help you so much at first. How could that be? It doesn't seem that anyone on the boards here was helped except for that guy's wife who took nine months. My doctor says she doesn't trust European studies. Maybe she is right. I feel embarrassed. First I brought her the Singulair study. Tried that a few weeks - it failed. Then this. Maybe I'll try Elmiron. I just don't know how to face the emotional issue of my already thin hair. Crappy on the outside. Crappy on the inside. Lori - what happens to you in the daytime if only at night it hurts?PV

[akrose]

Lori- if you had your bladder removed, would you go to the Cleveland Clinic?

[Baba Yaga]

Lori, I'm so sorry to hear you haven't improved. Aren't there things you could revisit to use in combination with the cytotec? So many people are reporting success with so many different things, and new things too, like enablex, vesicare, lyrica, cymalta -- or easily tolerated things like aloe, gotu kola, Urocit-K, cystoprotek.

I hope you will keep trying everything now that you found *some* benefit from the cytotec.

[ICLori]

Hi, Baba Yaga, thank you so much....

I've tried the natural remedies you've mentioned and every last one of them made my bladder pain and symptoms worse. Same with the other meds you mentioned - I've tried Ditropan, Neurontin, and Cymbalta - (same basic drugs that you mentioned) and all of them made my bladder pain and symptoms way worse. My bladder is just hypersensitive to basically every medication out there. Even Elmiron made my bladder symptoms worse. My bladder just can not handle meds. Pain pills work pretty well, but they irritate my bladder at the same time they are handling the pain, so I end up with worse rebound pain whenever I take a pain pill.

It's time for me to try Cyclosporine-A. Cyclosporine-A eye drops worked great for the inflammation in my eyes - maybe it will work for the inflammation in my bladder.

I have some reason to believe that my IC is in conjunction (or maybe because of) Sjogren's syndrome. I've had a positive ANA test, positive Schirmer's, I have dry mouth, and got arthritis symptoms really bad when the IC hit. All of those things are signs of Sjogren's. Including the IC. And the treatment for that is Cyclosporine-A. So it seems like the right drug for me to try. I've read up on it and it's been used on many patients for disease like Crohn's disease, etc. In low doses it seems fairly safe, and the studies I've read made it seem effective for IC.

Wish me luck! :) Mostly I'm worried my kidneys will not be healthy enough or my blood pressure will be too high, to allow the doctor to prescribe me the Cyclosporine-A. I might not even get to try it.

Blessings,
Lori

[Baba Yaga]

Lori, I hope The C-A works for you, and quickly.

:grouphug:

[ICLori]

Thank you - I've been so frustrated that all the medicines that have helped others, have caused increased bladder irritation in me. It's like my bladder is just too far gone or something.

Blessings,
Lori

[Mrs. Burschman]

Good luck, Lori! We're all cheering for you! Keep us posted.

Amy (Mrs. B) :bunny:

[ICLori]

Thank you so much, Amy. Hey, if nothing else, at least I'm kind of a good guinea pig for other IC'ers, because I'm willing to try any and every treatment, that's for sure!

Blessings,
Lori

[purpleviolet]

Good luck Lori. Are you stopping the cytotec right away? Sounds like the cyclorsporine - A might be right for you if you have an over active immune system. My aunt long ago had lupus and she took enormous amounts of steriods then, as that is all they knew then. I wonder if she had celiac which I understand some lupus do. I get some alternative newsletters that believe all autoimmune is being triggered by something external, atleast initially. Who knows. It would be so easy to cure if it was just eliminating something. My friend eliminated most grains and all her headaches and IBS went away. It's so hard to know what to do. Good luck. You are a champion. PV

[ICLori]

Thank you so much, PV - I'm still taking the Cytotec because I think it's helping me somewhat, just not enough anymore for some reason. I will probably stop it if the doctor allows me to try the cyclosporine-A though, just because it makes sense to just use one medicine at a time to see which one is working.

Autoimmune diseases run rampant in my family, and I think I just got unlucky genes, I don't know. Sometimes I think that autoimmune diseases are more common among Scandanavians and I have some Swedish blood (grandfather was from Sweden)...I don't know, I have all these theories...

I'm really sad though that I can't get complete remission anymore from my Cytotec. I've had a couple of nights pain-free but most nights I need pain meds, and I just had a mini-flare with my period this time so I'm giving up....

I'm just so scared that my blood pressure and/or kidneys won't be good enough to let the doctor prescribe me the Cyclosporine-A. I'll feel a lot better after I get the tests done and he says "okay."

I'll let you guys know if I get the prescription (I should know by mid-May I think, the tests should come back by then and I should be able to get another appointment to discuss the test results) and what my results are.

Blessings,
Lori
P.S. I wonder how everyone else is doing on Cytotec?

[ouchmyjunk]

Just started Cytotec myself. Day 2, so we'll see how that goes.

By the way, how are you doing? I'd advise against using ibuprofen. I have a wacky hypothesis that some IC can either be caused or exacerbated by NSAID use (Motrin is ibuprofen) because it suppresses the expression of a hormone that helps repair the mucosal wall of the bladder.

Hope all is well.