Questions about stopping Elmiron

[Sharon]

I am getting ready to start Elmiron for the first time. My concern is regarding the pain/flairs people seem to have when they stop the medicine. Those who have been on Elmiron and have stopped taking it for whatever reason , I would like to hear about your experience with this. Did it hurt, how long did it hurt, did you feel that your IC was worse after you stopped it, did you stop the Elmiron cold turkey, or gradually. Anything you can think of, I would like to hear about it.

I keep putting off taking my Elmiron for this one reason, I fear my IC will be worse if I have to stop taking the Elmiron for any reason once I start it. So any input would be helpful to me.

Thanks
Sharon

[Traysmum]

Hi Sharon

I was given Elmiron when I was first diagnosed with IC in December 98. I took it for 18 months but suffered from stomach problems whilst taking it. It did help my IC, to the point I thought I was cured. However, the stomach problems got so bad I had to stop taking it. I just stopped altogether. It had taken about 3 to 4 months before I noticed a difference with my IC but within a month of stopping, my IC got bad again. I wouldn't say, worse than before I was diagnosed though.

Over the years I have taken Elmrion off and on, even taking it out of the capsule to see if that helped but I am one of the unlucky ones in that it affects my stomach big time. It does help my IC but I have diahorrea up to 10 times a day and I am not sure which is worse!!!

I would give it a try, you might be one of the lucky ones it helps

Anne

[Nicole in ATL]

I stopped taking elmiron under advise from my uro. I wasn't having much improvement. I can't remember off the top of my head exactly how long I took it, but it was at least 6 months.

I stopped gradually, lowered the dosage over a couple of weeks. I did not have a flare up after stopping. But my symptoms were really bad at that time anyway.

I hope the elmiron works for you! There are people on this board who have had good results and have stayed on it a long time, without a lot of problems.

Good luck,
Nicole blink

[Cali girl]

I have been on it since July of 2003. I have had great results with it. It is interesting because I thought Elmiron was something that we were going to have to take for the rest of our lives but I have found people on this board talk about coming off of it after a long while. These are people that have had good results and have had no problems with it. I would be afraid to come off of it. I feel so great on it.

Cali :)

[Strawberry]

I took Elmiron for 3 years and it really helped. Six months ago I quit taking it cold turkey because of stomach trouble. So far I'm alright, but if I start having problems with my IC again I'll give Elmiron another try for sure.

[LindaP]

Traysmum-

I'm on Elmiron, had bad diarrhea and Dr. suggested Benefiber (OTC at your drug store). No more diarrhea and very few bouts of IBS :)

Hope this helps

[XkaraX]

i have been on elmiron for 7 months now. i take 2 pills in the morning and 2 pills at night. if i miss my dose by a few hours i am in GREAT pain. although, now i feel like it's not working as well as it was a few months ago.

xoxox

[windwalker]

I started Elmiron back in May. I was taken off it cold turkey after a few months due to chest pains. Within five days I was in awful pain, like I had before Elmiron. Doc ok'd me going back on it (although after my ekg came back normal and the pain was so bad I put myself back on it, normally I do exactly what docs say but I couldn't handle the pain). And again in July I had a tumor removed, and was told to go off it for a week. This time the pain didnt start until six days and not as severe. I went back on it right after surgery. I have had one bad flare and a cpl not so bad ones since then, but I feel better on it than off.

[songbird7]

I was on it for some years before it just stopped working for me and the only thing left were the side effects. I just stopped it and since it didn't work any more ( it never was fantastic for me, it was better at the beginning), no problem. I'm not a doctor and everyone is different but for me cutting down on protein and refined sugar really helps. I still deal with ICs ups and downs.........

[catwoman]

Hi there,
I'm new to this Network. Like so many others I do a lot of reading here. It saved me knowing I was NOT alone in my pain and feeling like I'm going crazy. I have been on Elmiron for 9 months now, I thought it helped then I had a bad flair up last month and can't seem it get it under control again. A lot of ice packs. A trick I learned here. :)

[vm]

:welcome: catwoman!!!! :)

I have found that the longer I am on Elmiron the further and further apart the flares are - AND they are less intense than in the past. I hope this is true for you as you keep taking it. :)

[catwoman]

Thanks for the welcome. I felt the same way about Elmiron at one point. This last flair has changed my mind, it's been a tough one, it hasn't let up. It's been over a month now. Thanks for the encouragement.

:)

[sadgirl1950]

i have a question I dont really understand how to work this board works so am posting here need help with posting also wanted to ask if anyone on elmoron i have been on it 2 mo. just 2 weeks ago my head started to kind of hurt not bad but enough to bother me , also the inside of my top and bottom lip hurts and my teeth anyone else had anything like this with elmeron

[sadgirl1950]

:dizzy: :toilet: :yikes: i have a question I dont really understand how to work this board works so am posting here need help with posting also wanted to ask if anyone on elmoron i have been on it 2 mo. just 2 weeks ago my head started to kind of hurt not bad but enough to bother me , also the inside of my top and bottom lip hurts and my teeth anyone else had anything like this with elmeron

[catwoman]

No I haven't had any of those feelings from Elmoron. I just don't think for the cost it helps me that much. Hope you're feeling better soon, when your mouth hurts it's no fun. :yikes: I'm new to the boards too, so I'm trying to figure it out as well.

[sadgirl1950]

No I haven't had any of those feelings from Elmoron. I just don't think for the cost it helps me that much. Hope you're feeling better soon, when your mouth hurts it's no fun. :yikes: I'm new to the boards too, so I'm trying to figure it out as well.


:bow: thank u for your reply i rarly get one

[catwoman]

You're welcome, I like replys too. get better soon. :)

[pattig89]

:) I am new to the boards also having a hard time printing things on this web.
I hope the Elmiron helps you and you are feeling better.
Thanks,
Patti G.

[dawnfawn]

:woohoo: I have been on elmiron for five years. Two years ago I cut myself down to two a day. The doctor was no help at all here. I have been dizzy on and off so that I have tried stopping it cold turkey. I stopped once for three weeks. I noticed no difference at all. I got scared though and went back to two a day. However, I am really worried because no one knows anything at all about side effects. For instance I have very odd visual problems. Several years ago I read a posting that elmiron can cause odd visual effects. I can no longer find that posting. Oh well I don't know what the answer is I may cut down to one a day for a while and see what happens.

[bunnykinb]

I had to stop cold turkey per my uro because I was having a swollen throat feeling. I don't know, but two days later I had horrible pelvic pain again.

bunnykinb

[lalarainbow]

Hi
I was on Elmiron almost a year and then it started to give me diarrhea...I tried taking it out of the capsule but that did not help.. I had to stop taking it .. I am doing quite well actually.. I still get short flares and it only last days and not weeks like it used to before I tried the Elmiron.
If I got really bad again I would give Elmiron another try.
~~Pam~~

[maddy]

Hi I do have headaches alot, but I had headaches before, but it seems like I have more headaches now. I have been on Elmiron for about 2 months. I am doing better than in the beginning, but I still have bad and good days. Maddy

[mary35]

:hi:Hi all I'm new here .I was told by my uro that I needed to have a procedure done to look at my bladder and then I was told I have IC. For so many years doctors told me I was crazy it was all in my head all the pain and bathroom breaks.
Its weird I was on elmiron for 5 years and I couldn't deal with the side affects anymore.I was sick all the time.It was horrible! So I stopped taking it less and less everyday and now I'm off it all together.It has been 6 months and I still have painful days but i hated the side affects of elmiron.My IC use to be so bad I would cry everyday and be in so much pain.Is there any other meds that will help my IC without all the crazy side affects like elmiron?I'm so happy I found this forum my famiy doesn't understand what I'm going through.It would be nice to talk to others that know what I'm going through
If anyone has any advice please feel free to write me.Thanks
Mary

[mary35]

I stopped taking elmiron i really don't see any difference be off it now for 6 months.

[Maidy]

These posts have been very helpful. I've been on elmiron with no side effects for a few years now. I was in remission for several months and so I decided to cut out one of my doses of elmiron. I now take only 2 a day. I'm really nervous about stopping altogether as it works so well for me and I don't have any side effects from it.

I still get flare-ups occassionally, but they usually pass quickly. I've even been able to start an exercise program which makes me feel really good.

After reading these, I might get brave and try to cut it back to one a day and see what happens.

I've also started taking dried aloe vera capsules. They are supposed to help as well. My dad was taking it for his ulcerative colitis and saw a flyer in his shipment about the benefits of it for IC patients, so he told me about it. I checked it out on this website and they sell it here. That's all the encouragement I needed. :smile tee