Elmiron

[alon1]

Anyone ever taken this med. Dr. gave me info. packet. I have a week to decide about trying it. Diagnosed with IC last month.

[traceann]

Hello! Oh yes, there are tons of us who take it, and I would imagine just as many who don't for one reason or another, LOL. I take 100 mg of it 3 times a day. It helps to fill in or "coat" your bladder walls so it doesn't become so irritated as easily. I have been taking it since mid-November of 2004. It does have a downside, as they say it can take anywhere from 3-6 months to see a difference, or improvement -- but from what I understand, if it is one that works for you, the longer you are on it, the more benefits you see. So it's definitely worth the try if you can handle waiting. In the mean time, I know that alot of the people have the bladder instills (put directly into the bladder via catheter) with various cocktails of medications, some including Elmiron, for more immediate relief -- that in combo with the IC diet, which I know for many and myself included has been a life saver, to say the least!!

I haven't had any instills myself, I just take it orally. I take it along with 5mg Ditropan 3x's a day, and vistaril (hydroxyzine --antihistamine) 25mg at bedtime.

My doc also let me make up my mind whether or not I wanted to take it. I had read about it even before he suggested it, but the minute he suggested it, I was willing to start taking it. And the only side effect I was worried about was a RARE one, hairloss. But, no worries there, haven't had that at all. Some do get nausea as a side-effect of it, but again I have been really fortunate, no side effects to speak of. The first day or two I had some stomach troubles with it, but none since then. Which is wild, cause I always get the "weird-little-known" side-effect of medicines!

Well, I hope that helps a little, I know you will gets lots of info on it from this site, especially in the patient handbook -- from meds, to self-helps, to the diet. (here's the link if you haven't checked it out already!
"http://www.ic-network.com/handbook/" )

Take care and feel better soon!
Tracey :)

[Imustpee]

Elmiron has been a miracle for me..I take 4 pills per day and for the first 6 months I have been on it I have also gone to the uro for Elmiron bladder instills...I have had 30 - 35...I feel WONDERFUL for days after...I am also trying the aloe vera gels and I have just started Visteril...

[CareBear]

Hi! I just started taking Elmiron for the second time. I tried it a few years ago and wasn't impressed, but am giving it another try. Drink lots of water!! I am usually one to get every side effect in the book and have been fine so far--its been almost two weeks.

Hey, it won't hurt any worse than the IC already does!

Blessings,

Cari

[alon1]

Thanks for the info. I want to learn as much as possible. Where I live, no one has heard of IC. Thanks again!

[traceann]

I totally understand about nobody knowing anything about IC due to where you live! I live in a really rural area, and it's impossible to even get specialty food items for the diet!!! UGH!

Tracey :)

[Julie B]

Hi there......you might want to post on the Elmiron board also if you haven't already!

I would love to see a study done on IC patients who go through an elimination diet first, then maintain on that while being treated with Elmiron. Seems to me that you would have better results........if you are eating foods that are damaging your bladder, how much harder does the medication have to work?

[traceann]

Oh yes, I agree with Julie B, the elmiron could never get a chance to get ahead of the game, it would be "torn down" as fast as it was "put up"!

Tracey :)

[navemj]

Just wanted you to know that I was on elmiron for five years. I stopped the drug and my IC came back full force. Now I am having elmioron instillations. I would suggest to defintly try it!
Maryann