Interstitial Cystitis (IC) Support Group

Hello Dr. O:

Yes, I was prescribed Elmiron around January of 2005. I was on Elmiron until March of 2006; no it did not make a difference. I wish I could say it did. I was given a DVD to watch which explained how the pill worked and how long it would take until I felt a difference. If i remember correctly a person could see results in about 16 weeks and it could even take up to 34 weeks. I was taking 200mg bid. I do believe that it is worth trying; just because it didn't work for me doesn't mean it won't work for someone else. My IC was to far gone and I now have the Interstim Implant which has given me at least 50% relief; I was bed ridden with the IC but soon after the implant I was able to do more and go out more. I still urinate often and have the urge to urinate even when I don't have to which can be very aggravating but the pain has decreased.
I don't know if you have heard of this website (you probably have) but I will give to you anyway www.ichelp.org also if your interesting in reading any stories about people with Sjogren's go to www.sjogrensworld.com...it is amazing the symptons and illness that people have with this disease and many people have had some type of cancer including lymphoma; it scared me. As you know auto-immune diseases can be very complex and hard to Dx. it took years for me to get a Dx. I am thankful however that I have a compassionate primary care doctor and as you know Boston has excellent hospitals.
Best regards
gloria

I took this drug in combonation with 2 others for 1 1/2yrs. It did very little if nothing at all. Hope someone comes out with something more effective...

I was given Elmiron to try by my URO doc. I've heard it may help after many weeks, but I took my first pill and got a migraine. Scared to take another pill. The IC diet is boring, but much easier to deal with than migraines!

Sorry, Elmiron was expensive and worthless. I wasted hundreds of dollars on the garbage, which could have gone towards my medical bills. It was rubbish...

i only take it once at bedtime. I tried 3 times and got nauseated and migrains as well... it has been proven to work for many many people though. It is expensive, it would be worth a try though... do more research... then make your decision.

Elmiron has been a life saver for me! I have been taking 100mg of Elmiron for 5 yrs now. The first 3 yrs I took it 3 times a day, then cut it down to 2 pills a day and just recently cut down to 1 a day. It does take awhile for it to work. I think it took at least 8 months before I felt any relief. Alot of people give up after a month or so. I am lucky to have good health insurance and can get my prescriptions for alot less that some people can. I know this is a VERY expensive drug if you don't have any insurance. What I want to know is if I have to take this the rest of my life and if I stop taking it, will my IC pain return? I haven't found a doctor that can tell me these answers. I am worried about the long term effects if I keep taking it.

Yes, I've been on it for two years and it has helped a lot although its hard for me to notice (my urologist can tell from my cystos/over distentions)

I've been on Elmiron 200mg daily since 2005 & although it took a long time to feel some relief I think it has helped my IC.
I have even tried to get off of Elmiron & after 4-5 days my stomach/pelvic pain, SEVERE bladder spasms & increased burning & feeling like I have to pee or have a UTI comes back. So I got back on it. The only thing is it took about 4-5 weeks to get back in my system.
It is very expensive - with insurance $40.00. I'm hoping that maybe something else will come out that's better & cheaper.

Does anyone know the long-term effects of this drug? Because what if I have to be on it for the rest of my life.
Thanks.

Wish I could try it. They are investigating my liver right now as th eenzyme levels shot up after using methotrexate and aren't coming down enough after a long time. Ahhhh!

I took Elmiron and found it to be extremely effective. I had no noticeable side effects. I began my treatment in 2001 when I felt I was at the end up my rope in discovering what was wrong with me. After I was diagnosed with IC, I began a strict regimine of modified diet, Elmiron, Elavil, trigger point injections and vicodin. I was on a combination of these treatments for over a year and as long as I stuck to the routine I found the symptoms to subside. Maybe I can attribute it to the Elmiron, maybe it was the combination of everything. But it has been almost 8 years and I have not had a flare up. My symptoms are very mild at worst feel like I have to pee constantly or when I am menstruating it is a bit aggravated. But nothing like it was when I was first diagnosed. I would say I definitely had a positive experiene with Elmiron and if I ever regress back to where I was I absolutely would begin taking Elmiron again.