How many people have stopped/restarted Elmiron due to side effects?

[cybersis]

I started on Elmiron November of 2004. I had to stop in February due to very very painful heartburn. After two weeks I restarted and low and behold the heartburn was gone! In the middle of June I stopped again due to excessive hair loss, I restarted and after two weeks the heartburn was again very painful and non stopping. I have decided to stop again and will try and restart in two weeks. The Elmiron has real helped my IC and have been able to live my life pretty normally with the exception of a few flares due to bad eating habits. Has anyone else had any experience with these symptoms and did the stopping/restarting have any effect on this. Really don't want to stop the Elmiron but maybe I don't have a choice. This is very depressing as having found a drug that works I may now have to stop due to side effects. My gyno is not very familiar with this disease.

[Janie Miranda]

cybersis,
I've been on Elmiron for about 3.5 months now and had some heartburn from it. I asked my doctor if I could take zantac because I had read on the ICA website that zantac and similar meds were antihistimine 2 blockers and could sometimes help a bit with the IC. Anyway the zantac cured the heartburn and maybe even helps my IC a little bit so maybe you can talk to your doctor about taking something like zantac and see if that helps you.
good luck,
jane

[cybersis]

I have been taking 150 mg of Zantec a day just to keep the pain down to a minimum. The doctor told me to do this the first time this happened and also told me to stop the drug completely. After two weeks the IC flares increased as well as the pain and frequency and we decided to re start the drug. Guess I should have left well enough alone and not worry about the hair loss but it was a lot and I really thought this would help.

[Dianne]

Many are instilling it that couldn't tolerate it orally. That's what I'm currently trying.

[stacey79]

I haven't tried stopping and restarting. I actually just asked my uro's nurse about it last week because it seems like I'm losing more hair. Anyway, the nurse told me that if I could avoid doing that it would be best. I'm finally feeling better and have been on ELmiron a little over a year. She said that if I went off it for two weeks that it could get totally out of my system and it could take months to start working again. I'm not sure if that's true. I'm going to check with my actual uro at my next appointment in a couple of months.

I hope you find a solution soon! :grouphug:

[SrMaggie]

I stopped taking it a year or so ago, maybe it's been two or three actually, but not because of the side effects. I thought I was doing really well and didn't need it anymore. Just this year things got pretty bad at work. I went to see the uro and when he greeted me with, "Now, what's your stress! Everytime you come in you have a new one!" That did not sit well with me. I left the office and didn't go back. Then I thought I had a uti and went to the FNP. I finally called a doc listed on the ICN board. That office took me almost right away. I was very pleased with the level of competence. We're treating the whole thing very aggressively and I am starting feel good. I have not experienced the hair loss to any degree. My hair seems really limp these days, but then it's 102 degrees in the shade. What wouldn't wilt!!
Peace
Maggie

[windwalker]

I was thinking the same as Dianne, check on having it instilled instead of taking the pill form?

[dee5]

I haven't stopped taking it but did have the bad heartburn. It seemed to be non stop. I Dr says it is more GERD (acid reflux) than heartburn. I started taking Protonix about 3 weeks ago and no longer have heartburn while still taking Elmiron. Luckily I have not experience hair loss. Hope this helps.

Deanne