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Top-Up Treatment with Cystistat

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  • Top-Up Treatment with Cystistat


    Hi,
    This is my first post; although I’ve searched through many of the topics.

    I’ve had IC for several years, getting worse over that time. Diagnosed by cystoscopy in 2009 {although we knew what it was before then but I was struggling with Colitis and decided to get that settled first}.

    I’m now having Cystistat instillations.
    After a battle for funding from my local PCT [I'm in the UK = Primary Care Trust] as they no longer fund cystistat, I was granted funding for a trial period. I had 4 weekly instillations, then 5 monthly so far, with 1 more (at 6 months) funded.
    I’ve been lucky in that Cystistat, after 4 weeks, made a real improvement in my symptoms; although unfortunately I had a couple of difficult to treat infections after a couple of the catheterisations, which set me back.

    I now have to recommence battle with the PCT to fund any further instillations.

    What I’d like to know, from any of you who have had experience with Cystistat, is how you decide WHEN you need a top-up with Cystistat and WHAT REGIME the top-up follows. I’ve noticed on forums that other sufferers who use Cystistat say they go for a top-up when their bladder starts ‘playing up’ again.
    With Cystistat my IC has greatly improved but not completely eased … so my bladder still ‘plays-up’, just to a lesser degree … so, should I expect it to improve more if I could have further Cystistat instillations immediately after these I’m having now or am I correct in thinking (after 8 months treatment) this is the best I can hope for?

    For anyone who does have ‘top-ups’, do you just have a couple or so at monthly intervals until your symptoms ease again, or do you restart the usual initial regime again = weekly for 4 weeks etc?
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