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My Gilenya first does experience

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    My Gilenya first does experience

    I took my first does of Gilenya at 8am last Wednesday morning. I was being monitored at a Concentra Immediate Care center. I wasn't sure what to expect, but was happy to see I wouldn't' be hooked up to a heart monitor or anything. With my anxiety, I'm sure i would have been watching that thing like a hawk! They started off with an EKG, then did checked my heart rate and blood pressure both sitting and standing. My BP was a little high, but it was due to anxiety I'm sure since its normally perfect. Then the time came to swallow the pill...Here we go!

    For the first hour, I was checked every 15 minutes. They checked my heart rate and BP both sitting and standing every time. After the first hour I was checked every half hour until the 6 hours were up. My heart rate or BP never changed! I was expecting at least a little drop in heart rate, but i was fortunate i guess. Hopefully that is a sign that this could work for me! I was asking the nurses there and they said they have never had a bad First Dose Observation. They had a few people get up and walk around the facility to get the heart rate to increase a little, but that is it. They mentioned changes usually start to occur after the first half hour, so I also took that as a positive sign.

    Throughout the 6 hours I felt fine. I was definitely anxious at first, but that faded after a couple of hours. My wife and I passed the time playing cards. I was able to eat and drink whatever i wanted and was even able to walk around. I just wasn't able to leave the facility.

    By the evening i was really tired though. I'm not sure if it was due to the Gilenya or not because i was out late the night before and had to get up early for my first dose. I will keep you updated on if the tiredness hangs around. I took my second dose at 7:30 the next morning and went to work. So far all is well!

    It is now Monday and I am feeling fine. The fatigue is no longer there, so I am guessing it wasn't the meds.

    Also, I have started an MS Support group on facebook if anyone is interested in joining. It is at

    **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**


    Thanks for reading. I'll keep posting updates if you are interested!

    #2
    Glad things are going well. I was nervous but started Gilenya last May and have had no problems or notable side effects.
    dx June 1994
    Tanstaafl !

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      #3
      I'm 13 days in and still feel great!

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