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Saying bye-bye to Gilenya...maybe

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    Saying bye-bye to Gilenya...maybe

    Ever since I was diagnosed in May 2013 I've been on Gilenya. And ever since May 2013 I've had a non-stop headache that NEVER lets up. Sometimes it's only at a 2.5 or 3 (on a scale of 0 being non-existent to 10 being totally incapacitated), but it's usually between 4-6. At this level I'm still functional, but just barely, since this level of headache really affects my ability to concentrate.

    This summer my neuro suggested I stop Gilenya for up to 12 days in order to test, to see if the headache is caused by Gilenya. So far it's been 8 days, and the headache is still quite healthy, today being about a 4. Four more days to go and I'll have to decide whether to stop it altogether or restart taking it. I REALLY hope that by Day 12 the headache will be a thing of the past, because I really don't want to start Gilenya again if it's the cause of my headache.

    If it is the cause of the headache, I'll probably go totally without any DMD for the next few months, and then when I move back to the U.S. (I live in China right now, but plan to move back to the U.S. permanently in Feb.) I'll probably begin Tysabri. We'll just have to see how things work out. But it would be totally wonderful if this headache would stop!
    "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

    RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
    Currently following Dr. Jelinek's OMS (Overcoming MS) plan

    #2
    I can share my experience with Gilenya and headaches.

    I was actually in the clinical trial when it was called Fingolimod.

    After hitting the 2 yr mark in the study, I began Phase II and was given the actual drug. About 6 months into that phase, I developed migraines. I had never had a migraine in my life and rarely had headaches.

    It was not pretty to say the least. Of course being in the trial, I kept the Drs and the clinical team up to date with everything that was going on. It was affecting my "quality of life" for sure.

    It was decided that I take a 3 month drug holiday. I can't remember exactly what the time frame was, but the headaches did stop. They gave me another 3 month holiday and they never came back.

    Scratch Gilenya off the list of MS meds that I can take. It is listed as a side effect.

    So hang in there, I hope relief is on it's way very very soon for you.

    Again, this was my experience and should not be considered typical or what you should or should not be doing for yourself.

    Good luck

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