pain seems worse after elmiron

[ouch larissa]

I have recently (3 mos) been taking 400 mg /day and my pain seems worse and more frequent. will this subside? also have thinning hair, and feel tired. Am I alone?

[pattig89]

Larissa,
I would call my dr. if this keeps up....Maybe something else is going on, or you need
another med to help you....Good luck and let us know how you are doing..
Patti G.
diagnosed IC for 2 yrs.
I am on Allegra once a day for allergies
Rhinocourt
Oxytrol patch
DMSO treatments right now once a week for 6 weeks.

[rosesitty]

Larissa - I would contact my doc. Perhaps he can prescribe something else to help you along, or maybe Elmiron just isn't for you. I went to a uro consult on Friday and she said she doesn't believe in Elmiron. Said the 38% efficacy rate was little better than a placebo, and that many people were better from the other drugs being prescribed to them at the same time. I really don't know what to believe at this point. I'm still on Elmiron (had my liver enzymes checked today so we'll see), but will discuss my treatment plan with my local uro this Friday.

[Kara Isabel]

I'd call your doctor and talk about your side effects. I'm also having alot of side effects with Elmiron....I'm not ready to give up on it yet but may do instills instead. And I have noticed and increase in pain since taking it, but I guess I'm just hoping that it means its working! lol

[LindaP]

Larissa-

I am going into my second year on Elmiron; 100mg morning and 100mg night is what I started out at. At the 3-6 month point my symptoms seemed worse but I was going through a lot of stress in my life so I figured that the flare wasn't subsiding because of too much stress. I quit my job, started de-stressing my life and the symptoms remained. I then went to this site with your same question and was referred to some sites on the web where I found an article that stated if you are sensitive to drugs in the sulfa family then Elmiron may give you trouble. Boy was I surprised and happy to read that! I AM allergic to sulfa drugs, knew that all along but didn't know Elmiron had anything to do with sulfa. I learned from experience that I can not tolerate the capsule so I pour the powder out on my tounge and then drink a full glass of water to wash it down. I never thought that there was a property in Elmiron that I'd react to. So I went to my doctor and told him that I finally feel that I'm not crazy, my sypmtoms are indeed worse and that maybe it was the Elmiron. He agreed to me cutting my dose to just the morning 100mg and I am to keep a diary of my sypmtoms. Well, low and behold, they are getting better and better. It has been 4 months on the half dose. I am soon to make an appointment with him to see if I can go ahead and ween off. We had initially agreed that I'd be on a half dose for a year and then take one every other day and continue to slowly reduce until I was off completely. (That in it self makes me wonder...if Elmiron is supposed to be 'just like pepto bismol' for the stomach why do I have to be so cautious getting off?)
Anyway, No, you are not alone, not with this disease or having more pain on this drug. We are all different and we all have different reactions to things so what I have experienced may not apply to you but when I read your question I couldn't resist sending you my story.

Best wishes to you,
Linda