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AS MY FIRST DOSE DRAWS NEAR NERVOUSNESS AND APPRENHENSION SET IN!!

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    AS MY FIRST DOSE DRAWS NEAR NERVOUSNESS AND APPRENHENSION SET IN!!

    My first dose was supposed to be this week but was rescheduled. Now, for some odd reason since I have had the extra time to think about it I've grown more nervous and apprehensive. I read some old post, some from back in 2012 and those have really made me rethink my position on taking Gilenya. My DW even made the comment the other night that she wasn't sure I should take it. Her comment really caught me off guard and left me speechless.

    The posts I read were enough to make you turn and run for the hills. Though the posts were three years old the medication is the same. Now I find myself in a quandary, do I take the medication or not. I'll be honest, this medication scares me. The other three I've been one didn't bother me at all. If it was an injection I just gave myself the shot and never thought about it. when I switched to Tecfidera I just took the pill and never thought about it. But Gilenya, it has me on edge.

    Is this normal? How did everyone else feel when they were about to take their first dose? I know no two people will react the same, but I'm just looking for some input. I guess something that will put me more at ease, other than a Xanax.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    I've been on Gilenya for nearly a year, and for me it's been great. I've had no side effects, although my liver function levels are up a little. They are not high enough to do anything about, and they have started to go back down (my levels went up on Copaxone, too.)

    My neuro told me they understand better now who is not a good fit for Gilenya, and weed them out. I'm having my first MRI this weekend since starting on it, so I'm a bit anxious to see the results.
    Optic Neuritis in 2004, Dx with RRMS in 2012. Copaxone, Sept. 2012 - September 2013. Gilenya, February 2014 -

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      #3
      Just had my first dose today!

      Had my first dose of Gilenya today and all went well!!! My heart rate dropped from 68 to 56 but came back up just enough that I could go home after the 6 hours. The nurse who handles all of the first dose monitoring for at the MS Center said that they have heard very little complaints about side effects from Gilenya.

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        #4
        I got very slightly nervous the night before and the night I took my first dose (that's when the severe side effect profile I read about got me thinking for some reason), but I've been on it two weeks now without incident. I did feel a little nauseated day two and I've had some very mild and short headaches off and on, but it's really been no big deal at all.

        I've also heard from people at my MS center that people seem to tolerate Gilenya really well. They say they've had tons of complaints about GI side effects of Tecfidera, but hardly anyone complains about the effects Gilenya has on them.

        Could part of your anxiety be because you know this is your last chance at a dmd?
        Diagnosed 1/4/13
        Avonex 1/25/13-11/14, Gilenya 1/22/15

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          #5
          The issue that I had with Gilenya was a very low white blood count so my doc took me off of it. The first dose was no problem, just long and boring. Make sure to bring a book if they do not have tv's in the room.

          Apparently, Gilenya has not been found to be very effective with secondary progressive ms but it did not hurt to try. I hope all goes well for your first pill and that it helps you like it does many other people. Good luck

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            #6
            Well I've been on Tec for almost 2 years and tolerated it very well. The only side effect I had was itching. Now I'm starting to feel a bit better about taking G.

            I never thought about the anxiousness coming from the fact that this my last shot at a DMD.

            Thank you guy's for the replies they have put me more at ease now all I have to do is put my DW at ease, she is really freaking out about his drug!!!
            Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

            It's hard to beat a person that never gives up.
            Babe Ruth

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              #7
              My MS Center also reports patients tolerating Gilenya very well, though this board is now making me nervous about it. Hope it goes well for you!
              2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

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