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Doc wants me to wean off Elmiron

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  • ICNDonna
    replied
    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

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  • earthlady
    replied
    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?

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  • feelingfine09
    replied
    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."

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  • earthlady
    replied
    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.

    Leave a comment:


  • BiblioGrrL
    replied
    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.

    Leave a comment:


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

    Donna

    Leave a comment:


  • feelingfine09
    started a topic Doc wants me to wean off Elmiron

    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!
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