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Some info. about Uracyst in Canada

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  • #16
    I think the Stellar rep said that they were going to get another company to run another US study for them, but they are not at the stage of even knowing what the company will be. With how slowly research moves forward, I would say it would be a couple of years before one gets off the ground.

    I'm still trying to figure out why there is such a profound difference in the cost of Uracyst between Canadian provinces ($400 in Saskatchewan and $280 in Ontario). I'll update you when I get the answer. I also found that the cost of Uracyst and Cystistat is the same in Canada, yet in the UK, Uracyst is 37% cheaper. If the FDA won't approve Uracyst, then perhaps there is some way to make is less cost-prohibitive in Canada for people who have to travel up from the U.S.

    Onset of symptoms: June 2010
    Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
    Diagnosis: September 2010
    Current status: Fabulous. I'm feeling 90% of normal.

    Current Treatment

    Gluten-free diet
    TUMS and Prelief with acidic foods
    Alkalinizing drops with acidic drinks
    Elmiron for replenishment of the bladder lining
    Dom-Oxybutynin for bladder spasm


    Past Treatment

    URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

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    • #17
      pipkin

      I agree, the red tip cathether is very irritating. The doctor used one during my first rescue instill. my uretha was burning all day and my frequency increased.
      Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

      I have moderate-severe IC

      Currently stopped taking all medications due to pregnancy

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      • #18
        Thanks for the info!!! I really appreciate it because I'm going today for my first Uracyst instill, but I must say I"m a little dismayed- I'm staying in Spain for Uracyst (would rather be in the comfort of home, but no health insurance in US and I thought, no URacyst too!) I'm paying 130 euros per vial!!! That's around 200 dollars per vial!!! I have to pay it out of pocket too because medicines aren't covered in my insurance plan. Gosh now I know I can get it at home in California- I guess that helps if it works for me and I end up coming home anyway. I pray they use a 'good' catheter on me since my cystoscopy was the most pain I've ever experienced, and I have to start work again tomorrow!
        IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
        Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
        Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

        Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
        Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
        Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
        Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

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