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Starting Gilenya from Plegridy

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    Starting Gilenya from Plegridy

    Hello,
    Dx 1 year ago this month.
    4 months or so on Tecfidera and failed it due to hypersensitivity/ basically becoming allergic more and more with each dose.

    5 months on Plegridy and just now being told to stop due to injection-site reactions being too large, red, sensitive, and long-lasting.

    Plan is to switch to Gilenya and I have completed all of the blood work and eye testing and insurance work. Just waiting to set up the 6 hour watch and then get my 1st delivery ordered.

    What are the first few weeks like? Anything I can expect or is this completely different for everyone. The other 2 meds I was on, most people had similar starting symptoms.

    Thank you for any insight,
    Sazed

    #2
    Hi SAZED. I hope that Gilenya is the one for you! I started it Aug 2011.

    The day of first dose was long and boring for me. Take plenty to occupy yourself. Maybe have some friends come by to visit if the monitoring site allows it. My DH took me and stayed with me all day. My DD brought my mom to visit with me and after she was sure that I was alright she left my mom and went to work, so mom caught a ride home with us. I really think that everyone but me was worried about it .

    The worst part for me was not smoking all day (yeah I know that I shouldn't smoke, but still ...) and I blamed the headache I had by the end of the day on that. And since my mom has lung problems we didn't smoke on the 1 1/2 hour drive back home .

    First couple of years were normal for me. I didn't have any energy before and I still haven't got any energy. I thought it kinda ?funny? when on my first neuro visit after starting G when he asked me how I felt - was I feeling better? I SO wanted to remind him that that isn't the purpose of any of these poisons, but I refrained. I did note that I was having more headaches - nothing too bad, but enough to take motrin for them.

    My WBC has dropped but the MS specialist that I see now isn't concerned. However I noticed around Oct of last year that I was having a lot of hair loss, and major headaches with extreme light sensitivity. She dx'ed the headaches as migraines and rx'ed Imitrex which helps some (but I am not so sure that they are migraines ) and 'reminded' me that blue eyes (like mine are) are prone to light sensitivity. She suggested OTC Biotin and Folic Acid for the hair loss, and it has helped. Ophthalmologist couldn't find any reason for my eyes to be so light sensitive (except dry eyes?) so I am still looking into that. MRIs have been fairly stable - a few new lesions since starting, but no relapses.
    I have continued with progression (mostly the invisible sx's) but am still mostly mobile, and "look so good " that it must be doing something.

    One last tip - Stay away from germs / sick people because your WBC will drop.

    Kinda boring huh? Best of luck to you.

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      #3
      During the 6 hour watch my heart rate fell pretty dramaticly and as a result I was tired and sluggish. That lasted about a day, it was back above 60 before the 6 hour so not sure if 6 hours at 55 BPM caused the whole sluggish day or what. My BP went up as well from about 95/60 to about 110/70 that never went away. In fact now it's about 117/80 but thanks to MS I am not as active so I suspect most of the recent rise is lifestyle not med. However you can expect an increase.

      Other than the increase blood pressure and that first day sluggishness I really haven't had much in the way of side effects. I do seem to be more prone to infection, got my first ever UTI 6 months after starting and have had several infections in my mouth (but my teeth are terrible so not sure I can blame that on G) I also used to get over colds in 2 days tops now they seem to linger but not so much I can be sure it's not another factor than the G.

      I am a pretty big fan of G but some others here claimed to have some pretty bad effects. For me though I was on Avonex then BetaSeron before G and both of those were 10x worse IMHO. With Avonex the flu like feeling would leave me laid up the whole next day after dosing and with BetaSeron I had 12% body fat so finding and not over using injection sites was hard. Also on both of those I ran 3 relapses a year on G I think I am running 1 to 2 a year so that is good.
      Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

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        #4
        Thank you

        Appreciate both of your kind words and thoughts. I do work as an RN but I am not exposed to "sick" patients very often. I work psych and we rarely get medical patients, so that goes in my favor.

        Extra fatigue and headaches sound rotten. Guess we'll see what cards I'm dealt. Thank you again.

        Bless you all,
        Sazed

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