Has Elmiron helped you?

[Daniel]

Personally speaking, I do believe that Elmiron DOES work. I have been on it for a bit over 12 months (300mg/day), and I have seen good results. My frequency and pain and flares are all down and I can live a perfectly normal life.

I am much better than I was a year ago.

I'd say that it took 4-6 months before I noticed any improvement. Also, improvement is steady but quite slow. I would estimate that my symptoms improve by 1% per month. But that's actually pretty good! I plan to continue on Elmiron indefinately.

So, how has everyone else found this drug? How long have you been on it? has it helped you?

[asmashly]

I believe it works, but it takes a little bit. I was on it for about 3yrs (300mg per day) and then went off for about 3 months. I then experinced the worse flare ever! But I am back on now since April 2005, and feel better.

[patricia1]

Daniel I am very happy that you have found great results with Elmiron. It has helped many people. But it can take anywhere from 6mths to 1 yr for full benefit effects. I was not able to take this medicine because of side effects, I had hair loss, but I wish I could have. It might have been a life saver for me if I could have. Again I am very happy with your progress. Hopefully there will be many more after you......

[vm]

I've been on it for about 4 years now and it has definitely helped me (along with some other meds). I feel normal most of the time. :)

[mandyleija]

I have been on Elmirion now for about a month and feel a little relief but still hurts sometimes to urinate and severe pelvic cramps. Since my Doctor has diagnosed me with interstital cystitis he gave me a few pain pills but said he will not give me anymore. Now i am also having low back pain too. I feel now i am being ignoed now from the Dr.

[diane57]

I've been on it about 4 months and have noticed a very very gradual improvement, so I think it does help and I plan to stay on it indefinitely.

[traceann]

I have been on it since Nov of last year, and I am definitely pleased with how I have been feeling, I hope it even gets better! But, lol, I am perfectly happy if this is as good as it gets... ;)

Tracey :)

[liznazz]

I have been on elmiron for 1 year and 4 months. Along with atarax and celebrex, I definitely feel a great improvement in my symptoms. I didn't start feeling any relief till about 8 months into using the meds. I plan on staying with it for a long time. liz

[VickiB]

Glad to hear you're seeing good results from Elmiron, Daniel.

I took 100mg/3Xday for a year, and didn't feel any improvement until the eight month mark. My day to day, normal discomfort was all but gone, leaving only a very slight frequency problem. For the past five months I've dropped the dosage to 100mg/2Xday and am still feeling great. I plan to drop to once a day in another month.

While over-all it definitely has helped me, I still pay dearly if I stray from the diet.

Vicki

[Sarah05]

I have been taking Elmiron since November 2004. I do believe that it has helped, but it takes a few months.

The most useful treatments I have found are a very strict diet, physical therapy for PFD, and Elmiron. I am also using acupuncture, and have yet to decide its effectiveness. I want to try it a while longer before I decide for sure (though it DOES certainly help with my emotions).

Sarah

[emilyrose197377]

I am glad elmiron has helped you guys. I found out elmiron didn't help me much. I also had to stop taking it because it made me real sick and made my ulcer bleed .

Kim

[sue1]

Its good to read something positive(4 a change) :)
I will be starting this in a few days~ Hope it helps..even 1% is better than nothing~

[Janie Miranda]

Yes, Elmiron is helping me. I've been on it only 4 months but could tell a little difference within a month. The symptom it helped me with the most was a terrible burning pain. Now that I've been on it for four months that burning is virtually gone. I have to watch my diet religiously or else my urgency/frequency flares up but thankfully the burning is gone. That symptom drove me crazy. I lived under a heating pad to help me deal with the pain for months as I couldn't take any pain meds - they just made my burning pain worse. Anyway, hope you have equally good success with Elmiron.
hugs,
janie

[rinnie]

I am newly diagnoised after a HD last week. The ONLY symptom of IC that I have is severe burning deep in my vagina (like a hot coal is burning 24/7). This has been going on for over 3 months. I am on Elmiron, Elavil and Attarax, but nothing seems to quiet the fire, not even the IC diet. I know the Elmiron takes a while to work, but was put on the meds over 2 months ago on a suspicion that I might have IC. My new uro says the burning is a "tender bladder" due to nerve endings out of control. Can anyone relate to this 1 symptom? The nurses say I am lucky, but I am at my wits end.

[bjt]

Janie,
I have had a similar experience as you. I have been on Elmiron for 4 months, too. My main symptom of IC was the burning pain. Now, with Elmiron, that is pretty much entirely gone. I can eat a wider variety of food now too. If I go overboard, though, on too many "bad" foods I do have a flare, but instead of burning its just frequency/urgency. It also doesn't last as long (1 to 2 days as opposed to 2 or 3 day flares before). I feel like Elmiron has helped me a ton... I eat a healthier diet now, and I feel much better! I also am taking aloe pills which I think help, but I'm tapering off those to see if its just the Elmiron or not that is doing the majority of helping.

cheers,

[Sarah05]

Rinnie-

I've had burning as part of my IC pain. My deep vaginal pain felt more like a sprained ankle than strictly burning, however. The pure burning for me is in the urethra. Physical therapy exercises and internal work seem to have helped the vaginal component a lot for me.

The diet did not seem to help me at all for six weeks. I mostly followed the diet for a year with no improvement, then went on it religiously for a month and a half. I then cheated once--and that's how I learned how sensitive I seem to be to diet. It's not always an easy thing to figure out, and it is an incredible inconvenience. The smell of coffee still makes me cry sometimes!

Good luck. Keep after your doctors. NO ONE is pain should be considered "lucky" unless their pain is -improving.- Good luck.

Sarah

[Jocotter]

I've been on it a couple of years, 4 a day, and it did really help. I had no side effects at all. I am currently having a flare though and I'm not very happy about it! However, I think the Elmiron overall has helped alot.

[Trishie]

I take elmiron ( 4 a day) for 10 months I am alot better than I was - still not where I want to be

[poetgirl]

Yes, I have been on Elmiron for 2 years and have seen significant improvement. When I started taking it, I was on 400 mg per day. Now I take 100 mg per day and most of the time, I feel fine.

[Vampireness]

Hi everyone,

I'm new and I got this problem in 2000 and all the wrong diagnosis were made and finally I found out I have IC in like january this year. My doctor did hydro and it seemed to help but I don't know why she didn't suggest I do it from time to time, plus it's very painful anywayz. I am from Singapore so we don't have Elmiron so now I have to wait for her to bring it in, that would take 2 months, so after all I have been waiting 5 years for something, 2 months is nothing. Is one medication alone enough to let u live a "normal" life?

Persin