Has anyone tried Elmiron for IC?

Has anyone taken Elmiron for IC? I’m not going to try it at least with what I know now, I can’t have weight gain or definitely not the concerning blindness issue that comes with it, but I’m very very curious as to anyone’s experiences with it!

Your answer

ZeldyWitch

1y ago

I recently just stopped taking Elmiron. I took it for about 2 months before it started helping the bladder pain and discomfort...I was hopeful that it was going to be a good solution until I started getting awful migraines everyday an hour or two after I would take it. It got to the point where I couldn't have a single light on in the house without feeling like my head was going to explode and becoming so dizzy...After I stopped taking it the mirganes became less frequent but now about a month after stopping Elmiron I still have migraines at least twice a week and have a lot of dizziness and trouble focusing. I was also worried about the warning that came with the medication about possible eye damage but since it was a less common side effect and more common in people who have taken it for years I took the chance. I can say that even after stopping the medication that my IC pain is still less than it was but having frequent migraines, dizziness, and sensitivity to light is not a good trade off...I hope my experience helps...

Gypsy_Soul

1y ago

Yeah, it’s tricky…the person that I know that took it says “it is a must have for anyone with IC” & that apparently the 6 months was all she needed to repair the lining of her bladder wall. I wish they’d come out with something with less negative side effects and a lower price too!

anemone

1y ago

my case was pretty minor, but avoiding trigger foods and taking aloe and d-mannose for a few months (at the recommendation of my urologist) helped mine. i still take both, and i have relapses sometimes, but generally only when i go too hard into trigger foods and/or get another uti, and symptoms tend to fade again. so, might be less effective, but also might help enough to repair some of the chronic inflammation and minimise symptoms. i also had physical therapy for it, which definitely also helped and definitely has less intense side effects, but is also pretty uncomfortable and definitely not a lower price unless you have really nice insurance... i could only afford it because i bum off my parents' plan and we always manage to max out, between all the issues the four of us have

Gypsy_Soul

1y ago

I know someone that took it for 6 months only; she said it was a life saver for her. She said her doctor didn’t advise taking it any longer than 6 months though. Hope this help 💗

cinnabunni

1y ago

Thank you so much for responding! I’ve heard that too- I can’t imagine risking that for only six months of relief before a guaranteed relapse 😅

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