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  • Sarojini
    replied
    There is debate on how effective Elmiron is -- even the company that makes it admits only 30% or so of people taking it orally are helped. However, we have a lot of success stories here from people taking it orally, despite that. We also have stories from people who it did not help at all.

    And finally, there are people trying it in instillation form right now, and some say it is great and others, well, not so much.

    IC is weird in that everyone is different... you may respond to something, and someone else might have a bad reaction to it. It all depends on body chemistry

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  • jlynn
    replied
    Thanks!
    my uro said he thinks the Elmiron gets "chewed up" in your system so if you take it orally not as much gets to the bladder where its needed. He prefers the instillation of Elmiron directly into the bladder. Any thoughts on this? It sounds like you are doing well Sammi, how long have you had ic, and how often do you flare up? How long on oral Elmiron? Any side effects?
    jlynn

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  • sami4
    replied
    Hydro

    I read in Dr. Moldwins book on IC that hydros usually last about 3 months, Donna says her last 6. You are either helped or made miserable by hydros.
    I think the Elavil and Elmiron helped me the most, I would murder anyone who tried to stretch my poor bladder with a hydro.
    Sammi

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  • DKB
    replied
    HANG IN THERE GIRL. YOUR ARE IN A GREAT PLACE FOR ADVICE, PRAYER AND ANYTHING ELSE YOU MAY NEED. THESE PEOPLE ARE SO SUPPORTIVE OF EVERYTHING YOU MAY NEED.

    Leave a comment:


  • jlynn
    started a topic just diagnosed

    just diagnosed

    Hi out there!
    Just diagnosed, and like a lot of you, very nervous about what it will mean.
    I am trying elavil 10 mgs, and tagamet, and I am feeling better! My worry is that I am only better because of the hydrodistention my surgeon did to diagnose me! I had a prolapse surgery 5 wks ago, which led to the hydrodistention and tada! diagnosis of IC, which I had been suspecting for a while. So now, I will go in to see my uro in a week, and we will settle on a course of treatment which could involve Elmiron by installation. or maybe just a "wait and see" . Does anyone have opinions on the Elmiron instil? Does anyone have knowledge of the hydrodistention and how long you are in "remission" from it? And finally, what about colostrum as a natural way to rebuild the bladder?
    I'm a teacher who has just had five weeks out of my classroom, and ready to get back to work with a positive attitude. You are all very inspiring and I thank you!
    jlynn :
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