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    Stopped my meds...having a relapse

    I was taking copaxone for 1 1/2 years and had numerous reactions to it. Mostly, I could't handle the stress and pain of the injection. My neurologist suggested I try Gilenya instead. While I was completing all the necessary testing prior to starting Gilenya, I stopped taking my Copaxone. Almost immediately after, I started to have increased fatigue, generalized pain, emotional dysregulation, poor stress management, etc. I still haven't started on the Gilenya and probably won't for another 6 weeks.
    Has anyone ever experienced something like this, or similar? Did I perpetuate myself into a relapse because I stopped the Copaxone?

    Any comments would be helpful as I'm feeling pretty discouraged right now...

    #2
    hi

    Hi Khloe. Sorry to hear you're doing poorly.

    I stopped Rebif because I was tired of argueing with myself over every shot quite some time ago. I didn't like the side effects at all. I ran high fevers, achy all the time, etc...

    It could be stopping the drug or you could just be 'due' for a lapse. Nothing is sure with this dratted dx. Heat is a big stessor for me. Are you doing more than normal or spending time in the heat or cold?

    If you're really worried, check with the dr. I don't know if you need to be off one drug for a certain time period before switching since I've only taken one.

    Hope you feel better soon. Wish I could be more helpful.

    <hugs>

    Comment


      #3
      You probably did not bring this on. I too had to stop Rebif before going on Tysabri, and there was a long paperwork and insurance to do like you. I did have a relapse after stopping rebif, but I had relapses on rebif too. So, like the last poster said: It may have just been time for you to have a relapse.

      Best thing to do is call your neurologist and get some IVSM before it gets too late.

      Good luck, feel better!

      Lisa
      Moderation Team
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Khloe --

        It's hard to know if stopping Copaxone triggered your relapse.

        I had a similar situation 5 years ago. When I switched from my neurologist to an MS Specialist, my new doctor determined that, at 1-2 fairly serious flares per year, my Betaseron was not very effective. She decided to switch me to Copaxone. While I was in the transition time (waiting for paperwork/being trained, etc), she said it was OK to just go off Betaseron for that month.

        I had a flare during that month. It is possible that, although she didn't think the Betaseron was very effective, that maybe it was doing more than she'd thought.

        (BTW -- the switch ended up being a good idea. In the 5 years since I began Copaxone, I've only had 3 flares, and 2 of them were caught so early that they were very very minor. I have not had a flare for 2 years now, and I had never, since developing MS 10 years ago, gone 2 years without a flare prior to this.)

        Several years from now, Khloe, even it stopping your med triggered your flare, if the new med is a better "fit" for you, you'll be glad you made the switch, even if it triggered this one flare for you.

        ~ Faith
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Don't beat yourself over this because I did the same thing...and I got a flare. Who in the heck knows what caused it? I think...please don't quote me on the numbers, but less than 40 percent are on DMDs.

          Hope you get out of you flare quickly. And I am going back on a DMD next week...and I am not looking back...it is over.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

          Comment

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