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Appell Instillations No Longer Working--Need Help

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  • Appell Instillations No Longer Working--Need Help

    Hi, everybody,

    I'm in a difficult place today, and I hope y'all can help me. When I was first diagnosed with IC, my uro-gynocologist put me on 6 weekly instills of Appell cocktails, 3 months of Elmiron, PT, and of course, sticking to the diet.
    Well, I've stuck to the diet, done the PT and the exercises that were recommended, but the Elmiron, deepened my depression down to suicidal levels, especially when I was told that my physical therapist was wrong and my muscles are still too tight.

    So…they've switched me to the antihistamine treatment, which may or may not be causing my crippling dizzy spells. Still sticking to the strictest form of the diet (brown rice, pasta, corn, peas, green beans, carrots, beef, chicken and occasionally vanilla ice cream), still doing the exercises, yet the Appell instills are working less and less. The first one made me feel great for five days, but they've worked for a shorter and shorter time since then. The last one worked for about five hours.

    This is a bit of a concern since I need to drive 30 miles to the doc's office and 30 miles back. They've offered to teach me to do the instills at home, but apparently, the only pharmacy that can produce this cocktail is located in California, and the Cal pharmacy wanted 600$ for a kit for four treatments. Yikes!

    They are all nice folks at the Doc's office, but when I mentioned that the instills were working less and less, one of the doctors cheerfully said "Well, we can always install the battery! So you're not out of options!"

    I do NOT want the battery installed, especially after I've heard about all the pain and fatalities involved. I am looking into acupuncture to help my tight muscles; once that's solved, maybe I can go back to the Elmiron. Has anyone else had this problem? Is there any treatment between the antihistamines/Appell cocktails and the battery? And how do I phrase it firmly, yet politely? I don't want to hurt anyone's feelings.

  • #2
    Re: Appell Instillations No Longer Working--Need Help

    But you can try some different instills. Some are just not working for some people. There are more options to try.

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    • #3
      Re: Appell Instillations No Longer Working--Need Help

      True, that. Do you have any suggestions? Thanks!

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      • #4
        Re: Appell Instillations No Longer Working--Need Help

        I am getting Uracyst, but in USA is hard to get, need to order from Canada somehow. I am not from US.

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