I've been doing very well recently.

[Agape]

I've been on Elmiron for a year and a month now. Taking two capsules twice a day. I've tried to cut back, but usually when I do, I start noticing symptoms again. My dr has said I will probably be on it for the rest of my life. If so, I am wondering what the side effects of staying on a drug this long might be. I rarely take Elavil anymore or any other drug. Most diet things don't seem to bother me. I have cut out the ones that were, but it is a small list...thank goodness, because I love to eat. Just hope this is a lenghthy remission!:woohoo:

[bjcov]

good for you! I don't have an answer for you, since I am only on Elavil and doing probably 70% better, my doc doesn't want to put me on Elmiron until I do the PST test (I haven't taken the test because I don't wanna deliberately put myself into a flair.) I hope the Elmiron isn't that expensive for you!

[JennaS]

Agepe,

You are very lucky!! Congratulations!! That is wonderful.

To answer your question about Elmiron, I have had IC for 20 years and stayed on it as long as 5 years straight and I never had any side effects at all. I have blood work done all the time (for other things) and my Liver is always perfect. And I have taken up to 600 mg per day for long periods of time (my IC is pretty bad). I also never noticed any hair loss. I do loose hair everyday but it doesnt seem like anything different than when I wasnt on Elmiron. I have used Elmiron off and on for about 15 years and it has never given me any problems. Thank God for that, if I didnt have Elmiron I would be in a world of hate......lol :evilsmile

[ICNDonna]

That's good news! We like to hear the good reports.

Thank you for sharing.

Donna

[vm]

Awesome! So wonderful - and very cool that you can eat some of the things that used to be forbidden. :)

I have been on Elmiron for 7 years - no long term side effects as of yet. I have my liver enzymes checked yearly.

[SharonA]

Thank you for sharing such good news. :):):)