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Important uracyst question!!!

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  • Important uracyst question!!!

    Hi,

    My name is Lisa and my main problems are frequency, urgency, and intermittent pain (I go to the bathroom all the time, and after I void, I'm not in pain...this is why I go so often). Anyway...I have been on elmiron for almost a year (400 miligrams), done tons of heparin lydo installations, low dose elavil, and attarax made me feel like a zombie so I stopped.

    QUESTION:
    I am going to start uracyst soon. I am wondering if I should stop my heperin/lydo installations while I do the uracyst treatments? I do the heparin/lydocane once a day or once every other day. I don't want it to interfere w/ the uracyst. I'm going to ask Dr. Parsons and another urologist what they think, but I'm afraid of offending him, because he seems to think that elmiron and heparin/lydocane installations are the answer. Perhaps they are for some people and perhaps they would help me if I did more of them, but regardless, I do want to try uracyst. HAS ANYONE WHO HAS TRIED URACYST ONLY DONE URACYST FOR THEIR INSTALLATIONS? Or did you do other installations at home as well during the 6 weeks uracyst treatment and thereafter for monthly maintnence? What is your experience using uracyst? I have read a few posts on it and I'm very excited about trying it...

  • #2
    Don't be afraid to talk to your doctor about your health. In my experience, when I express my honest concerns, they work to find another treatment. Remember, you health and finding successful treatment for your illness is their chosen profession.

    Even though lidocaine/heparin treatment is their preferred treatment, there are other treatments. Dr. Dell has completed research for the manufacture of Elmiron and co-written with Dr. Parsons. He also uses heparin/lidocaine instillation as first treatment, but it is not the only treatment he uses. They have to know your concerns because it is the only way they can investigate other treatment.

    Dr. Dell thinks the research on Elmiron is promising, but he said there has not been enough valid and reliable research to say it is a cure. In his practice (limited to IC and pelvic reconstruction) about 80% of his patients do find instillations will resolve issues connected with IC. Which means 20% aren't helped and other treatments should be investigated.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

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