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  • question about elmiron

    I've read a few posts about elmiron and so far it seems like elmiron has to be taken continuously to work.
    I would like to know if it's similar to an antibiotic, where you can stop taking the medication after you feel relief?
    or will you have to take it continuously and for life after you start?

  • #2
    I've been on it for over 1 1/2 years, and from what I have read it has to be taken continuously for life. I know that I could not stop taking it without bad repercussions. However, I have seen some people on here that were able to reduce the dosage after a while.
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

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    • #3
      thanks, musiclover

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      • #4
        Musiclover is correct. Some people are able to reduce their dosage eventually.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          I just started elmiron about a week ago. I read on here some people stop and then the symptoms come back so then they start again when they do. It would be nice if this was a cure. The stuff in it was made to coat the bladder. It would be nice if it was a "permanent coating" that would work for us all.
          Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

          I have moderate-severe IC

          Currently stopped taking all medications due to pregnancy

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          • #6
            I have been on elmiron for 12 years. I was able to readjust my dosage. At first I was taking 3 a day; the moved me up to 6 but just in the last few months I was again able to go to 3.

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