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I get to go to the Cleveland Clinic, woo hoo! :)

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  • #16
    Hmmm....Mary, does that mean Dr. Rackley does not use immunosuppressant therapy for IC? That all he does are instillations? I hope he has more than just one treatment for everyone....

    I'm going to try to see where the Cellcept trials for IC are....see if there is a place nearby, see if I can qualify for the trial. Of course, one never knows if one is getting the placebo or the real stuff, is the problem....

    Do you think I will have a chance of talking Dr. R. into allowing me to try another immunosuppressant, maybe one that isn't so hard on my kidneys? Or maybe if I went off it for a month or two, got my kidneys back to normal, then I could try it again at a lower dose this time (the CyA I mean) and see if my kidneys hold up at that dose.

    I'm just frustrated because immunosuppressants were the only thing that worked for me. And it really bugs me each time a doctor (this is not the first time) thinks something is the matter with ME because Elmiron, Atarax and Elavil did not work.

    Blessings,
    Lori

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    • #17
      Dr. Rackley

      Lori,

      No he never mentioned any immunosuppressant to me. He did say that usually by the time that IC patients got to him it was time to remove their bladder. However, with his new treatment regimine he is seeing better treatment results.

      Now I remember the bug.....it's called uro plasma.

      He does seem more ready to use more unconventional ways to treat IC. Oh, also, he said to stop all insaids.

      All the meds that you mentioned didn't do anything for me but make my symptoms worse. So, you are not alone on that one.

      PLEASE, don't give up hope Lori. I'm on my 3rd month of the instills, which he said that it takes about 6 months for the bladder to heal. Dr. Rackley did say he would take out my bladder than if the instills didn't work by than.

      I also have 2 uros in Cincinnati, which 1 is a surgeon and he will remove my bladder with a robot, Da Vinci, it's called. So, right now we are just getting prepared if the instills don't work. The procedure with the Da Vinci is supposed to be less invasive with a much more speedy recovering process.

      But again, Don't give up hope. I wish you nothing but the best with tons of relief.

      God Bless,
      MARY


      Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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