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Gillenya

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lorib75
lorib75 Posts: 490 Member
in Social Groups
Has anyone here started taking the new MS pill Gillenya? I was all set to start taking it, even did all of the pretesting, but then my insurance changed and I would have had to pay $2000 roughly out of pocket. Just wondering how well it works. I was on Copaxone for a while, but the injection site reactions were so severe that it scared my kids.
Thanks for the input!

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  • carilyn39
    carilyn39 Posts: 91 Member
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    I take Gilenya. love it! i haven't had a relapse for nearly 2 years. There is a co-pay assistance program available. (at least there was when i started it). i know its scary how much these med's cost. I had a nasty reaction to avonex. holy cow. my husband couldn't breath next to because my head hurt so bad. i will hope the best for you and the gillenya. (no side effects for me AT ALL)
  • psmd
    psmd Posts: 764 Member
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    I've been taking it since August and doing pretty good with it, no relapses. I kind of feel like I constantly have a cold about to start with it but otherwise no real problems. They do have a copay program but I'm not sure how much it covers. Maybe your doctor could call your insurance company? Sometimes that helps. Hope it works out for you!
  • AshleyRKnutson
    AshleyRKnutson Posts: 98 Member
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    FYI - in case you hadn't heard -

    http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm284355.htm

    http://nationalmssociety.org/news/news-detail/index.aspx?nid=6269
  • Sinisi2012
    Sinisi2012 Posts: 333 Member
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    I've been taking it since Jan 2012 and I have never been happier no side effects at all. I feel so free not being tied to doing shots all the time.
  • LizHowerton
    LizHowerton Posts: 329 Member
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    Hi' I've been taking Gilenya for over a year now. I had one mild flare since I started taking it. I have taken Rebif and Copaxone before...and Gilenya has basically no side effects for me. Good luck. And yes Gilenya has a copay assistance program.
  • kmac524
    kmac524 Posts: 24 Member
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    Any issues with weight gain on Gilenya? I keep seeing stuff online where people GAIN!
  • Sinisi2012
    Sinisi2012 Posts: 333 Member
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    No weight gain as a side effect of Gilenya
  • LizHowerton
    LizHowerton Posts: 329 Member
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    Nope on the weight gain. Have maintained.
  • kmac524
    kmac524 Posts: 24 Member
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    Today's the day I go in for my first dose. I'm defiinitely a little scared, but I just keep praying. Wish me luck & keep me in your thoughts. I go in at 11:30am Central time. Sit there 6 hours. I guess I can take stuff to do??? Read???
  • kmac524
    kmac524 Posts: 24 Member
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    After asking about 9011 questions at my dr's office, I decided to not take Gilenya. Not right now, anyway. I didn't necessarily hear anything bad, just had a gut feeling...
  • Sinisi2012
    Sinisi2012 Posts: 333 Member
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    After asking about 9011 questions at my dr's office, I decided to not take Gilenya. Not right now, anyway. I didn't necessarily hear anything bad, just had a gut feeling...

    Sometimes you just have to go with your gut feeling. There is no one size fits all med for everyone, what works for one may not work for the other. You definitely have to be comfortable with what you chose and that it is the right decision. Good luck with whatever med you take. :flowerforyou:
  • psmd
    psmd Posts: 764 Member
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    Regarding the weight gain issue, I've lost 35 pounds while on it.

    Do what you feel is right for yourself!
  • unicornlady77
    unicornlady77 Posts: 72
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    Ive been taking it for almost 2 years,I love it,no side effects and no relapses
  • Jane61849
    Jane61849 Posts: 30 Member
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    I've been taking Gilenya since May of last year. It's been so easy! No flu side effects like Rebif, and no side effects like Copaxone where I didn't know if my lungs would tighten up and I wouldn't be able to breath and then have violent chills for 2 hours. (I felt like I was spinning the roulette wheel every time I took my shot to see if this would be a good night or not.)

    I'll get an MRI in May to see if I have any new lesions sense I've been on Gilenya, but the day to day has been wonderful!!!

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