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Hang in there- it won't be long(effective treatment)

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  • Hang in there- it won't be long(effective treatment)

    Hello everyone! I live in Orlando Fl and just got back from seeing an IC specialist in Rochester New York. My IC for the past three months has been out of control. I can't get any relief- there is constant pressure on my bladder so as you know I'm peeing drops all the time. He started me on Elavil and Atarax and we'll see if this is working in a month from now. However, good news.... I was fortunate enough to hve him answer many questions. In fact, the office visit was close to two hours. I asked all sorts of questions and got a lot of answers. He asked me to be part of the BCG study that they were doing there in Rochester. So far it has a favorable 60% response. That's good. And nobody with IC has gotten TB that has opted for this treatment. I didn't choose to partake in the study because that would mean that I would have to come off the Elmiron which I don't know if it's working but I don't want to throw away what it may be doing for me. Also, you never know if you're going to get the placebo. He also told me that the vast majority of IC patients are well read and articulate and that there is so much lobbying going on in Congress. He said that research for IC was moving more quickly than it was for breast cancer. And a final thing... on my way out the door I asked "do you think they'll have an effective treatment for all within ten years from now?" His Response, " more like five years. We're gonna get you better" So everyone hang in there. 5 years is a long time, but know that research is being done and we will with our strong minds bury this horrible disease! Stay Positive. Oh and by the way the day after my appointment there was an article in the Rochester D&C titled UR testing TB drug on cystitis. Much research is done here and quality doctors exist. Dr. Mayer and Dr. Messing.

  • #2
    Thank you for the news! I've about ran out of hope and am so depressed about this disease. I really needed to hear that. Pray on about finding a cure!!!


    • #3

      You just made my day! Thank you for the great news! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

      Gail <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />


      • #4

        Thank you for the good news and information. It makes me a lot more hopeful.



        • #5
          Wow shaunie that's great news! I now have a little bit of hope for my dad. Thanks and good luck!! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />
          "Yesterday is history/Tomorrow a mystery. TODAY IS A GIFT/That's why they call it the present." -Checkmark


          • #6
            I'd about run out of hope, too. That is great news - thanks for posting it! Kathleen