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SORRY FOR ALL THE POSTS BUT....

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    SORRY FOR ALL THE POSTS BUT....

    My DW is beside herself with me getting ready to start Gilenya. She is extremely worried over the sides effects. I explained to her that if I at least don't try we know what we are going to get. My MS will continue progressing at a steady rate.

    I told her I will get a 14 day starter pack. By the time I am finished with that we should have a pretty good idea of how I am going to handle or not handle Gilenya.

    So here goes nothing. I usually side with my DW but I'm going to have to at least give this a shot. This is MY health we are talking about here. I understand her concerns and have great empathy for her but I think this one is my call.

    Any thoughts out there?
    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
    this has nothing to do with what medication you take, but I want you to know that there is no need to apologize. That is what we are here for, we are "patients helping patients". If you do not tell us, we cannot be of any assistance.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

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      #3
      No need to apologize! You are welcome to tell us what is on your mind. Personally, I want to hear about the lives and problems of other MSers. If you haven't noticed, I use this board to explain, complain and vent. I think you know your body and you need to get the drug that you think is right for you. I've been told by my health care people that you need to weigh the risk/benefit of the therapy. Good luck.

      Comment


        #4
        Originally posted by Waydwnsouth1 View Post
        My DW is beside herself with me getting ready to start Gilenya. She is extremely worried over the sides effects. I explained to her that if I at least don't try we know what we are going to get. My MS will continue progressing at a steady rate.

        I told her I will get a 14 day starter pack. By the time I am finished with that we should have a pretty good idea of how I am going to handle or not handle Gilenya.

        So here goes nothing. I usually side with my DW but I'm going to have to at least give this a shot. This is MY health we are talking about here. I understand her concerns and have great empathy for her but I think this one is my call.

        Any thoughts out there?
        I can totally relate to this. I've tried most of the DMD's have been one of those patients that have either had bad side effects or allergies to these drugs. I'm still RRMS, but have stopped taking them and my Dr is fine with that.

        When push comes to shove, every single drug, prescription or over the counter, has potential side effects. Even Tylenol.

        But I had a similar mindset, if I don't try, how will I know if this is the one for me.

        I wish you the best of luck with the Gilenya ( I was actually in that clinical trial). May it be "the One"

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          #5
          NO NEED FOR SORRY, I JUST STARTED GYLENYA 01/3/15
          NOT HEARD SIDE EFFECTS WHICH CONCERNS ME AS USUALLY I KNOW ABOUT THEM ALL B4 HAND.
          LIKE OTHERS HAVE HAD NO LUCK WITH DRUGS SO FAR, BACLOFEN,TYSABRI,TECFIDRA,BETASERON,AMPYRA NOW ON TO GYLENYA.
          WONDER WHATS NEXT.

          Comment


            #6
            Originally posted by highlandmck View Post
            NO NEED FOR SORRY, I JUST STARTED GYLENYA 01/3/15
            NOT HEARD SIDE EFFECTS WHICH CONCERNS ME AS USUALLY I KNOW ABOUT THEM ALL B4 HAND.
            LIKE OTHERS HAVE HAD NO LUCK WITH DRUGS SO FAR, BACLOFEN,TYSABRI,TECFIDRA,BETASERON,AMPYRA NOW ON TO GYLENYA.
            WONDER WHATS NEXT.
            correction

            feb 3rd 2015 started

            Comment


              #7
              I have been on gilenya for about 3 yrs and for the first 2 wks I recall bathroom issues,or if I missed a dose.


              TS Dx RRMS 1995

              Comment


                #8
                I would weigh my spouse's input and empathize with their concerns but ultimately, it's your body, your decision. Hope you do well on G!!
                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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