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I'm scared. Any vets with advice or good stories?

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    I'm scared. Any vets with advice or good stories?

    If I pass the eye test on the 3rd, I start Gilenya on the 7th with that 6 hour observation. I am really nervous and scared yet excited at the same time. I mean a pill?! Wow! The side effects seem scary but I used to be on Rebif and I was scared then too I'm sure.

    Speaking of Rebif, as of today I am officially off of it per neuro's orders. That makes me nervous. I was on Rebif for 4 years then Copaxone which messed me up with flare ups bad and have been on Rebif about 4-5 months again, but the neuro doesn't think I'm responding to it the same. Something about my relation with Rebif and interferons as of late.

    If you have been on it awhile or have a story I'd really love to hear it. Something to ease my nerves. Oh and just to let you know I am midway through a flare up now.

    Tell me anything you can I'd appreciate any insider info. Like do you eat with it or is it better to take in am or pm or how long have you been on it. Did it cut your relapses and maybe even help with walking or symptoms? Just type anything, please

    Thanks in advance

    ~Jenna
    RIP Jenna's Beloved Momma
    Best MS Support System Ever
    7/42 - 12/12

    #2
    Hi - I have been on gilenya for about 3 years now

    In that time I have had no relapses or progression but have had a couple of new lesions

    At first I had some chest pain and shortness of breath but that was only for the first couple of weeks

    I take mine every morning and really have no side effects I don't think and it seems to be keeping things in check.....

    Fingers crossed!

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      #3
      Going into my second month on Gilenya and so far, so good.
      Although it's not necessary to take it at a certain time or with food, I do both simply to help me remember to take it each day. I take it with breakfast every day. I have heard that we metabolize vitamins more efficiently when we take them with food, so I hope that I am getting my money's worth of Gilenya when I take it with food. Gilenya nurse told me it didn't really matter though.

      If you're worried about the first dose, I'd would bet your biggest concern will be how to combat the boredom while you wait. My heart rate dipped no more than 8 beats at any time and I was back to normal by the second to last hour there. The infusion patients and I went Dutch on a pizza and partied all day. Might as well have fun with it.

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        #4
        I have been on it since October and things are great.
        The first few weeks I had a mild headache, but that went away.
        I tend to take mine at bedtime, but that is just because I take all my other meds then.

        I have no problems on Gilenya, and feel like I have my life back!

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