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    Uncommon side effects?

    I have to change my dmd due to side effects and have narrowed my list to C, G, Aubagio or Tech.

    My question is for those who have taken or are currently taking these: what are the uncommon side effects that you have experienced or know about?

    I ask b/c with B I have mostly had only uncommon side effects, sx not listed on the standard packing list but available online if you dig deep enough.

    Thanks for sharing!
    DX 10/2008
    Beta Babe 12/2008-07/2013
    Tecfidera 07/2013-01/2018
    Aubagio 01/18-09/20

    Ocrevus 09/20-present

    #2
    Other than my hair thinning slightly I have had no side affects common or uncommon since starting abagio2 1/2 months ago.

    Comment


      #3
      I had an uncommon side effect to Copaxone...it was not listed on the package. So uncommon, that only about 10 or so of us have had it in the US. My MS Specialist reported it to the FDA. I am told that it can be avoided now with taking a steroid prior. I am not going to do that.

      With that said, as far as side effects go, I am a huge fan of Copaxone...huge. Yes, there is a shot everyday, and yes, there is a stingy welt for a few minutes, but I drank my Java and went on with the rest of my day. It was a ritual.

      I am aware of the IPIR effect, where you heart can race and it feels like a heart attack and many will panic. Although, I never had an IPIR, as a kid who had heart problems, I would have just laid on the couch and wait for it to go away, because I would have realized what it was. An IPIR will not hurt you.

      I LOVED Copaxone. Thought it was a great drug.
      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

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        #4
        Copaxone nauseated me (1-3% risk), interferons gave me suicidal thoughts (very low risk) and I never acclimated to them so I felt like I had the flu for 24 urs after each shot, Aubagio made my hair start falling out (14% risk) and gave me diarhhea/loose stools for months, and on Tecfidera, as long as I take a Zantac, absolutely nothing beyond mild flushing every week or two. No gastric issues, no nothing, really. I <3 Tec.

        My neuro has noted that I am extremely sensitive to meds, especially when it comes to gastric issues, so we're thrilled I am tolerating Tecfidera. really though, it comes down to what your body will handle. We're all different, so what works for me my not work for you. Plus, you can always switch meds if you need to.

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          #5
          As a result of the side effect of lymphopenia and leukopenia while on Gilenya, I got endocarditis. This was NOT from the drug, but underscores how serious of an infection you can get.

          When I was on Copaxone, the only side effect I got was the itchy welts and lumps. Some were quite large, but after 3 - 4 months, this side effect happened less frequently. I would have stayed on it if it were effective for me.

          Good Luck!
          Kimba

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

          Comment


            #6
            Thank you for all of sharing your experiences. I seem to react opposite of the majority w/dmd's so I really need to be educated about potential side effects.

            For anyone who may be researching potential side effects of B (and possibly all interferons): hair thinning, loss of sex drive, suicidal depression and for women, menstrual cycle changes in addition to (or in my case - in place of) the standards.
            DX 10/2008
            Beta Babe 12/2008-07/2013
            Tecfidera 07/2013-01/2018
            Aubagio 01/18-09/20

            Ocrevus 09/20-present

            Comment


              #7
              Side effects

              Copaxone --> migraine headaches
              Interferons --> hallucinations
              Gilenya --> macular edema which I already had in my R eye; my resting heart heart is consistently 52, so they don't want to try a med that will potentially lower it more.
              Aubagio --> elevated liver enzymes which I have


              That's just the MS drugs I have weird ones with anti seizure meds, bladder meds...etc.
              Melissa (dx. 3/22/2011)

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