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  • when you are in remission...

    What do you do when you are in remission?
    I was on elmiron (stopped now) and the diet and I've been in remission for several months from mild IC. Do I continue the diet? Or do you think it's okay to stop a little (like, hey, not talking about eating oranges or anything crazy like that!) or will that re-damage my bladder?

  • #2
    i would continue the diet and enjoy being out of pain. it sounds like everything is normal for you again and that is wonderful. i would be afraid to go off the diet if i were you. i wish you complete health the rest of your life. keep us posted
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    • #3
      Usually people don't stop elmiron if it's helping. The effects from it are not permanent. I would definitely continue the diet.

      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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      • #4
        I've been in remission for 3+ years now. For me, that doesn't exclude the occasional bladder twinge, but almost all of the time I do not have chronic bladder pain, and I never have frequency and urgency anymore. I'm off all IC meds, but have remained on the diet. Once in awhile I'll add in a food to see how I do, but since I have other inflammatory medical issues, it seems to work best for me to remain strict about diet. The other thing I do is take natural anti inflammatory supplements.

        I'm glad to hear you are doing well and wish you continued success.

        barb

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        • #5
          I haven't been really in remission in years, but the last time I was the only thing I was doing was taking Elmiron. I have never been too diet sensitive but I do watch what I eat, and if I am not familiar with the food I won't have it.

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          • #6
            This too would be an interesting survey type thing. For those who get lucky and have a remission, what do they feel it was that put them there? What was that one defining thing? Maybe this stuff can get narrowed down a bit, altho realize there is a 50 tined forked road and everyone is different.

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            • #7
              fifteen yr remission

              I had very severe ic for fifteen years and then when I hit menopause things were almost normal. I did continue atarax and I needed the diazepam to keep things normal. I stayed on a low acid diet. I was given gabapentin for an unrelated problem and that helped also.

              I got a severe case of shingles four yrs ago and lost my remission but it's not like it was before. Right now I'm dealing with intense vaginal itching under bladder wall.

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