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Gilenya update

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psmd
psmd Posts: 764 Member
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So my neurologist called me today and told me to stop taking Gilenya for now due to some patient deaths. It's unclear whether the deaths are related to the medication but it's being looked into by the FDA. Kind of upsetting since personally I've been doing fairly well on it...not sure if anyone here is on it but thought I would share.

http://www.businessweek.com/news/2012-01-25/novartis-s-gilenya-pill-reviewed-by-eu-u-s-after-11-deaths.html

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  • mdfishinggirl
    mdfishinggirl Posts: 18
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    Sent you a PM. :)
  • Benji49
    Benji49 Posts: 419 Member
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    I hadn't heard that docs were taking people off the drug. I had heard that a few deaths were potentually linked. But, lets face it all the side effects and possible effects for most of these drugs are a little scary. It comes down to how each individual's body processes it.

    What are they talking about putting you on now?
  • carilyn39
    carilyn39 Posts: 91 Member
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    no no no. i have gone 2 years with out a relapse. i DO NOT want to have to start shots again. I know i am being over dramatic, but this would really stink. i hope your doc is just being overly cautious.
  • psmd
    psmd Posts: 764 Member
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    Yeah my doctor is being cautious. He said they're taking everyone off in Europe (I don't know if that's true or not). I think basically he doesn't have a lot of information right now. He said to wait a couple weeks until he hears more about it.

    I don't think there's anything else I would want to take. I don't want interferon and the only other one is Copaxone which is injectable :( doesn't sound appealing obviously.

    I'm a physician also so I understand the fear of crazy side effects and worrying but I do feel it's an overreaction considering the lack of info right now. Personally I think it should be my choice unless it's taken off the market but I'm trying to be a good patient. I stopped a coupe days ago and am partially curious how I will feel. I think you can go for 14 days off of it before starting over(first dose monitoring at the doctors office). I guess I just need to wait and see...
  • ChristineW82
    ChristineW82 Posts: 116 Member
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    That's scary. I just received paper work today about Gilenya from my neurologist because we've been discussing starting up that or Copaxone. :huh:

    Now I have something else to consider into my decision.
  • Benji49
    Benji49 Posts: 419 Member
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    This is what they are saying on the MS Society, Canada site.

    http://mssociety.ca/en/help/msupdates/msupdate_20120123.htm

    Bea
  • Benji49
    Benji49 Posts: 419 Member
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    And, while I'm at it......the latest on Vitamin D and MS:

    http://mssociety.ca/en/help/msupdates/msupdate_20111215.htm
  • ChristineW82
    ChristineW82 Posts: 116 Member
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    Thanks for the articles Bea!
  • DsAdvocate
    DsAdvocate Posts: 93 Member
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    Scary. I'm on Gilenya and have been for a while.
  • Hootsmamma
    Hootsmamma Posts: 254 Member
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    Thanks for the post. I was actually considering Gilenya. I am currently taking Copaxone and have been for the past 14 yrs. The daily shot is no big deal at all anymore. Really small needle (sub que), and the side affects were just some minor site reactions--which only lasted a few minutes (with a slight sting from the medication). Don't even think about it anymore. I think I'll continue with the alternative program am I trying as I can still take the Copaxone while trying this with no ill effects. Will wait and see how I do and what happens with Gilenya. I appreciate any and all info on MS treatments. I figure the more informed I am, the better choices I can make with my neurologist. It will be interesting to see what happens as I will be going to the Mayo Clinic in the near future--look forward to what input they will have. Please...keep sharing!
  • AshleyRKnutson
    AshleyRKnutson Posts: 98 Member
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    Hello all. I'm brand new to the group. I work for a company that the Gilenya mfgs now own and the drug has only been on the market for a little over a year so yes, there are going to be "kinks" that need to be worked out. I've read the articles about the drug and I congradulate your dr for not hiding anything from you. It is always scary when I new drug comes out.

    I hope that all of you guys find the medication that you need. :smile:

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