Elmiron for the rest of my life?

[Agape]

:confused:I've been on Elmiron (2 capsules twice per day=4 total) since August. Yes, it has helped my IC symptoms, but I do think I've experienced hair loss especially on top. I already was having problems with this due to hormones since menopause started and now I think it is worse, so I am blaming the Elmiron. My main concern is the dr says I will probably have to take Elmiron for the rest of my life. I was just wondering if this is true for most IC patients or is there an alternative that would work just as well without the side effects?

[ICNDonna]

A few people manage to stop taking it, but most need to continue.

Donna

[dg2901]

In a little over a years time, I went from taking 3 pills twice per day down to 1 pill at night for maintence and am doing fine.

Best wishes...
Diana

[Dora]

My Dr said I will most likely have to take it the rest of my life as well. My hair is also starting to thin and I dont know if its doing anything to help me yet. I said I would try it for three months just to give it a chance , and I guess I can ware hats and wigs if it gets to that point. What really upsets me is on top of everything else I get to lose my hair and The Dr just didnt tell me about that lovely side effect. The pharmacy said this was the only drug that dos what it dos and there really isnt another option.

[dverba]

This has been my one sticking point. It cost alot, it only works in 30% of its useres AND it causes hair loss(in some).

If the odds were even a little bit better in the % of success I would not complain at all about taking it. Of course I would love to be symptom free! My dr said some people do not notice a difference for anywhere from 3-12 months. That is a long, expensive time to wait and see if it will work, IF at all.

What choice do we have, we do what we have to and try anything that might work.

[runningemiles]

Okay I know this is crazy but I cannot figure out how to post a thread. I am registered and all.
Regarding the Elmiron, I have only been on it six months but I have been told after a year or so your linihng in your bladder gets thicker and you are able to come off of it.

[Agape]

runningemiles: You just go to the main topic page and look at the top. It will say "new thread", click on that and then type in your topic and comments.

I've been told that is what Elmiron is supposed to do, but I guess if you go off it, then your bladder will start to lose the outer lining again and you will have to start all over. At least if it forms a lining, it will help with symptoms and perhaps you can go back to eating what you want again. At least that is what I'm hoping for.

[kadi]

I prayed for Elmiron to work & it actually made me worse. And I am, honestly, a little envious of those who can take it & find that they can return to more normal eating & lifestyle. The medicines I'm on help my IC pain & frequency, but do nothing about my diet sensitivities & have other side effects, like weight gain, constipation & dry skin, eyes, mouth. And I'd rather take a pill than have to instill medicines in my bladder via catheter.

I guess it would depend on the amount of hair loss if I'd want to quit a medicine that was making me better....