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Starting Gilenya next week now i have a major concern!

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    Starting Gilenya next week now i have a major concern!

    When my Neuro and I started talking about switching to Gilenya I started doing my research. One thing that concerned me was herpes could be a problem for anyone taking Gilenya. My Neuro didn't seem at all concerned he said he would just give me Asyclovir (sp).

    However, I was just reading some old posts in the Gilenya room and there seem to be some major issues with people with herpes. In fact one person even died because their immune system had been so compromised.

    Now I am beginning to wonder if it's even a good idea to take Gilenya. I have not had an outbreak in about 10 years. Would it be a good idea to take Asyclovir(sp) to fight off a possible outbreak before it happens? I feel rather certain an outbreak is imminent when I start Gilenya. That is something I definitely DO NOT want to happen.

    I should mention that I am coming off of Tecfidera which is also an immunosuppressant. So going to Gilenya is like adding gas to the fire.

    Any and all ideas would be much appreciated!!
    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
    Waydownsouth, Which (if any) poisons we put in our bodies is a very personal decision, but just for me, I was willing to risk the side effects of Gilenya. Occasional light headaches (which may or may not be from G.) some moderate thinning of hair and a lowered white cell count are the only side effects I have had.

    While Herpes is not anything to sneeze at, IF you get it then know also that it is treatable.
    Yeah a compromised immune system is something to be concerned about, but I use ?normal? precautions. Frequent hand washings and staying away from anyone I know is sick. A friend of ours will be in the hospital next week and I have already informed her that we will not be visiting her there. Life does happen, and my granddaughter is only 4 so she is a germ magnet. But I have not caught anything from her.

    You have posted that G is like your last option. For me it was worth the risks. Be careful, and watch your labs.

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      #3
      Why are you going off Tecfidera, being no relapse in 10 years?

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        #4
        goblue,

        I am going of Tec because my last MRI in July of 2014 showed numerous new lesions in my frontal lobes and my MS is progressing at a rapid rate. Plus I am just coming out of a major flare. A flare so bad that steroids did no good. However, I must say it was a high dose oral steroid because I cannot take IVSM due to a reaction I had the last time a took them.

        So a switch is called for and I have tried everything else. Well, everything except Tysabri because I am JCV+.
        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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