Stopping Elmiron

[lttlewun]

I hope someone out there can answer this question for me.

As of yesterday I have stopped taking my Elmiron. I am wondering how long after being off of it will my symptoms return if indeed it was helping me?

Also, let's say my symptoms do return. I know I and start taking the Elmiron again, but does anyone know how long it will take to start having relief again? Does going off the Elmiron undo all the good it possibly did and if I start it again will it be like starting it from the very first day again?

Thank you to everyone who replies in advance!:)

[icnmgrjill]

Ummm... usually within a week or two. Read Dr. Parsons lecture on our website for more info and what he suggests to patients who are going off of it. http://www.ic-network.com/guestlectures/

[musiclover]

Why did you decide to go off of it? Are you having bad side effects? I would think you would notice within a few days, but I see Jill linked to an article that probably has more good info than I have.

I know when I went up from 400mg to 500mg, I noticed an improvement within 2 or 3 days, so I would assume going off of it would have a similar speedy effect.

[lttlewun]

Jill ~

I have read that lecture from Dr. Parson's before, but I don't see any section that mentions about going off of Elmiron. Am I missing something or just blind? LOL.

Musiclover ~ I recently received a second opinion on my IC diagnosis from a doctor I found here on the ICN. Both he and his nurse do not believe that I have IC b/c I do not fit the typical profile. I do not have urgency/frequency, I do not get up at night to void, I do not have pelvic pain and I do not notice that I am food sensitive. My main issue right now is vaginal pressure/discomfort. They advised me to go off of Elmiron and to wean off of Elavil. They gave me vaginal Valium to use to see if this helps. They believe I may only have PFD, but we are doing other tests to rule other things out in the meantime. I still may have IC, but they said if I do have it then it is a very mild case. They have been treating IC patients for 10 years and they don't seem to think that my symptoms are IC related.

[fmcbride]

I am presently expermienting with going off Elmiron when I am not in a flair.
I find within 3 days I am able to control the flairs. This has not always been the case but as time goes on I am learning. If I eat at home and prepare foods that are safe I'm okay. It is when I eat out - the unknown ingredients that seem to affect me.

That being said an instillation with the Elmiron and the other ingredients is considered a 'rescue' treatment. Fast acting. When I was having more trouble I was going to my doctor every other day for a total three days for these instillations. It usually worked.