Elmiron and Flares?

[TerryEllen]

Has anyone flared when starting Elmiron? If so did you stay with it? I started it yesterday early in the day, then had a night flare. But I also ate green beans, and that's the 3rd time I've flared after those...but within 30-60 minutes. It seems then, that the green beans are the problem, although that's pretty fast to start flaring...? Confused and afraid to take more...

[blueskies]

I started Elmiron on Feb. 14th the day after I had a hydro. I am flaring bad, but I'm not sure if it is from the hydro or the Elmiron. It seems like my symptoms are worse right after I take Elmiron on an empty stomach. I'm hoping things improve but like you I wonder if it is the Elmiron. This probably doesn't help you but I can understand your pain. I hope you are feeling better soon.

[kadi]

I took Elmiron from Dec. 23 til one week ago. I realized when I talked with my uro that things had been getting gradually worse & worse. Constant sensation of having to pee and having more & more food sensitivities.

I was scared it was the hydro/cysto wearing off (I had that in Oct); my uro said the only way to find out was to stop the Elmiron, that I could always restart it if needed.

I stopped it a week ago & am feeling better, not great, but better. Go figure.

I am not sure about the role of sulfa allergy (I'm allergic to sulfa) & the "sulfate" in Elmiron??

Good luck - Elmiron does have a hotline that will connect you with a nurse to answer questions...
I don't remember the number offhand, but I saw it on these message boards?!!

[kadi]

Oh, about your flare question....

I've flared 20-30 minutes after eating/drinking something -for me that's usually how long it takes- the good news about that is it makes the culprit pretty obvious!

[TerryEllen]

Very interesting about the allergy. I think that salt might be a bad item for me, and it has sodium in it. I'm going to ask tomorrow if there is a sodium free compound. Can't hurt to ask.

[vm]

Just wanted to mention that I am allergic to sulfa and have done fine on Elmiron. Kadi and I have talked and she did learn that there is a small subset of people allergic to sulfa who have trouble with Elmiron --- but I did want to post that I know many people who have sulfa allergies who do fine on Elmiron. I only say this in case someone out there is considering it and would be afraid to try it b/c they have a sulfa allergy --- most of us do fine with it. :)

[YankeeCandle224]

I believe the # is 1-888-Elmiron. Hope this helps. I too was rx'd it, took forever to get it because it cost so much, even with insurance the copay was 65.00, and I took it for about a week, with terrible stomach aches, gas, and nausea, but when I stopped it those symptoms got better and are occasional again, meaning like 1-2 times a week for me instead of 24/7.

I do plan on starting it again because my IC symptoms are moderate and I need something to hang on to that will help me and I didnt give the Elmiron a good enough try.

Hope that is the right number. If its not 1-888, it might be 1-866 or 1-800, I cant remember....too early in the morning.

Sandy

[Sharon]

Kim, You must be a mind reader, I am also allergic to sulfa, and have great concerns about taking Elmiron. Thanks for your post, it helped calm at least one of my fears regarding this medicine.

Sharon

[vm]

Well, good, Sharon. :) I know how I was/am when starting a new med and I can see a side effect that happens in a minority of patients and get scared to death about it. lmao The sulfa thing has been brought up before and I had found some great info once upon a time about sulfates being completely different than sulfa. I'll have to see if I can find it again.

There have been lots of posters here who are allergic to sulfa and do fine. :)

[TerryEllen]

Thanks for all your comments. I think my problem was actually that I got my first period in 5 months (I thought I was done with those) and the hormone surge set of the worst flares yet. My doctor agrees, she's convinced there's no problem with the Elmiron. I started again early today, and no flare, took more this afternoon. I'm feeling a flare coming, but this is my pattern...good day, bad day, good day, bad day...yuck.

[kadi]

Thanks Kim for clarifying the sulfa allergy thing:)