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  • Doc wants me to wean off Elmiron

    Hi guys! I've neglected to post here for a couple of years because, thankfully, my IC has been well under control on Elmiron. But I have just been thrown a curve ball and I'm a little freaked out right now.

    My new (as of the new year), miserly insurance company not only requires my doctor to call them every 6 months so they can "approve" my Elmiron coverage, they have now sent me a memo saying they will only approve 3 capsules a day instead of the 4 I've been taking for almost 5 years. Between this and the Elmiron shortage, I was anxious to talk to my urologist.

    I was thrown for a bit of a loop when he told me that he's treated about 1,000 women for IC, and very few of them keep coming to him year after year for new prescriptions. He seems to think that most of them are tapering off on their own. I told him that I thought that IC was only supposed to get worse with age (I'm 40), but he said that was mainly true of people who are diagnosed later in life. He did admit, as I already knew, that no one knows the mechanism by which Elmiron works.

    Anyway, my doc thought that I would do just fine on 3 caps a day instead of 4. (After all, I had enough stockpiled from skipped doses that I should have enough to get me through the Elmiron shortage!) I've been taking 2 a day for the last 2 weeks, and I seem to be doing ok, except that I'm using a heating pad more than usual. My two biggest trigger foods are Diet Coke and black tea. I can still handle Diet Coke on this new dosage, but I haven't tried black tea yet.

    My bottom line is, I'm no fan of pills, but I was having a horrendous flare for about a year before I finally got diagnosed with IC, and I can eat and drink whatever I want now on my current dose, so I am terrified of reducing my dosage. I am the kind of person who will get a UTI at the drop of a hat (mainly after sex) so every time I travel I bring Macrobid and Prosed with me just in case.

    What do you guys think? Is it wrong of me to want to stay on Elmiron just because I don't have to deal with the IC diet when I'm on it? My doc says he'll give me a scrip for 3 caps/day when the shortage is over. I kind of felt like I was being a pain in his butt by staying on the stuff., but I trust him, so I'm reluctant to find another urologist.

    *Whew* Thanks for reading if you made it this far!
    Diagnosed with IC in October 2006.

    Current medications/treatments:
    100 mg Elmiron/day
    50 units Synthroid/day
    Macrobid, Uribell as needed
    acupuncture for allergies

    Other treatments that worked for IC
    Physical therapy for pelvic floor dysfunction
    heating pad, stretches and trigger point therapy
    yoga

  • #2
    You may want to avoid your primary triggers even on elmiron. Some people are able to reduce their dosage and still feel okay.

    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

    Comment


    • #3
      No, it's not wrong for you to want to continue a medication that has approved your quality of life. What's wrong is the miserly insurance company! And I would not feel guilty about asking your doctor for a continued prescription for Elmiron. You are paying him to treat you...and that's exactly what he should do.
      March 2011-Symptoms began
      May 2011-Tentative diagnosis by OB/GYN
      October 2011-Confirmed diagnosis -- IC/PFD

      Current treatments:
      Elmiron- 300 mg (Began 12/11)
      Hydroxyzine- 50-75 mg (Began 7/11)
      Tizabidine- 2mg 3xTID, if needed (Began 12/11)
      IC Diet-Began 5/11
      Pelvic Floor Therapy-Began 12/11

      Current Supplements:
      Cystoprotek
      Magnesium
      Fish Oil
      Biotin

      Comment


      • #4
        It sounds like an odd restriction by the insurance company but I had currently read something on Elmiron stating that they found that dosages above 300mg a day was not any more effective, and didn't prove to be better. Maybe this is the guideline your insurance is using. If the higher dosage was the one dosage that helped you, maybe you could try appealing it through your doctor.

        Comment


        • #5
          Good point, Donna! I do try to limit my intake of certain foods, but I don't want to give up my tea habit!

          BiblioGrrL: Thanks for the encouragement. I am seeing my doctor next month anyway, so I guess I'll keep experimenting with my trigger foods in the meantime and see how it goes.

          earthlady: Thanks for the reference! I found the thread about that; the relevant info is towards the bottom:
          http://www.ic-network.com/forum/arch...p/t-18854.html

          "Ortho-McNeil sponsored a 32 week multicenter study which evaluated three dosages of Elmiron (300mg, 600mg, 900mg). Yet again, researchers found that there was no statistically significant difference in response between the three dosages. They suggest that duration of therapy, rather than dosage, appears to be the most important in obtaining results."
          Diagnosed with IC in October 2006.

          Current medications/treatments:
          100 mg Elmiron/day
          50 units Synthroid/day
          Macrobid, Uribell as needed
          acupuncture for allergies

          Other treatments that worked for IC
          Physical therapy for pelvic floor dysfunction
          heating pad, stretches and trigger point therapy
          yoga

          Comment


          • #6
            The tea habit was harder for me to break then coffee. I'm getting used to mint tea now though, and it's ok. Maybe you could switch to decaf black tea with using prelief?

            Comment


            • #7
              Try thinking of it this way --- you know that if you put your finger on a hot stove burner, it's going to HURT! Are you going to put that finger on the stove? Of course not --- you also KNOW tea is probably causing bladder pain ---ask yourself if you would rather have the pain than give up the tea. I would think the answer would be simple.

              Sending encouraging hugs,
              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

              Comment

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