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    #1

    Starting Gilenya

    I start the new med tomoro and am scard the doc sed it wil mak me vere tird and if it dos how il I be abul to wlk my lil dog he wil be so sad he depends on me to be ther for him
    Nobody els evr wonts to tak the tim to tak him on the long walks he liks and is use to thay are alwas in ahurre and that aint fear to him he wil be brokin hartd and wont undrstand at all I kno I ned to tak care of me but NOT if it mens my bestest frend in the whol werld is gonna suffr for it !!!!!!
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    #2
    Fatigue is not one of the side effects of Gilenya. You should not feel "very tired" while taking it.

    Either your doctor is misinformed, or you misunderstood him.

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      #3
      No that is what he sed

      Ok wel I herd him say it and I askd my daughtr aftr and she sed that was what he sed but sins you proble kno mor I wil tak it I jus worre abot my dog he is vere vere vere importint to me Thak you for ansring me so fast

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        #4
        No, I don't know more than your doctor (or any other health professional). All I know is what the listed side effects of Gilenya are.

        However, I've just done some reading on our Gilenya forum and apparently some people who are taking the med are experiencing major fatigue.

        I'm always inclined to believe what people who are actually using a drug report, as opposed to what the drug companies say.

        Anyway, if you have unacceptable fatigue you can always stop taking Gilenya (after talking it over with your doctor).

        Good luck!

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          #5
          Forgot to mention...one poster did say she'd found that taking Gilenya in the evening made the fatigue less of a problem.

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            #6
            Starting Tuesday

            After being off of Tysabri for 7 months, I finally got the approval for Gilenya and get my first pill next week. Am more than a little nervous. Have had MS for at least 20 years so hope this does a little something for me.

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              #7
              A little Scared

              I am just in the process of doing all the test before I start gilenya and I am a little scared but think it has to be better than injecting myself with a needle. I have been on Rebif for nearly 5mths now my last blood test showed inflamation of the liver don't know if from Rebif but explains why I have been feeling like **** and I just hate it. Was on it in 2002 to for a year and I think I felt the same. I try to keep positive and I got nothing to lose.

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                #8
                Loredana,

                Good Luck. It is easier to swallow a pill than than take an injection. Supposedly, Gilenya has a higher efficacy rate ... why I'm now on it after almost 10 years of all the CRAB drugs and Cytoxan. I do think about what adverse affects the pill might have each time I pop it out of the blister pack, but I still take it ... hoping it helps slow down this dreadful disease. I'm almost done with week 6, so know soon my body will be at the "full" dose.

                Another 6 - 7 weeks before my bloodwork, and keeping my fingers crossed those results are OK. Soon after, is my follow-up opthamologist appt. In the meantime, I check my eyes often by looking at the square the opthomologist gave me. I need to check that I can still focus on little solid white square in the center of lots of other little black squares. No breathing problems, but my neuro still wants another pulmonary function test in a year.

                I have had some increased spasticity, so periodically need to take some oral baclofen (I have a baclofen pump that is programmed to release a certain amount of baclofen continuously). I have had increased back pain, but that is getting less frequent. A couple of headaches, but Motrin helped those. Overall, much better than the high fevers I got on the interferons and how I felt after chemo! And, it is easier to swallow a pill than take a shot everyday (Copaxone) and deal with ongoing site reactions, although I felt that drug was the safest ... it just wasn't working. At this point, the risks just go with the territory in trying to find a drug that works for me .

                All we can do is "try" and hope for the best. Taking any DMD is a gamble (will it work & will it harm me?), but so is not taking one. In the end, it's our body and we have to take full responsibility to what we do or don't put into it.

                Wishing you well in your decision. Keep us posted on when/ if you start and how you are doing.
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

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                  #9
                  I have been on Gilenya for 7 weeks, and I honestly did feel "very tired" the first week or so. That has passed along with the other side effects (mild chest pain, dry mouth/lips, etc.) But I can't honestly say that I feel any better. I think I was diagnosed and put on treatment before I really knew what flares were like, and don't know how long this flare has been going on, but I really don't like it. I was having a hard time distinguishing between the MS and the Gilenya side effects.
                  My point, though, is that the "very tired" feeling didn't last very long. If you get through the first couple weeks, that should pass. Good luck!

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