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Not alone with the unlisted side effects

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    Not alone with the unlisted side effects

    I started Tecfidera several months ago. I too was excited to say goodbye to a needle. With the only major side effects being flushing and possible digestive issues, I thought it would be great. From the beginning, I've had weird side effects...
    At 240 mg 1X per day - I would not only experience flushing, but would get real itchy for about 20 minutes...
    My neurologist suggested a low dose asprin, which helped...
    When I tried the full dose of 240 mg 2X's per day - my body seized up and I thought I was having an exacerbation...
    Instead of calling for a round of steroids, I tried backing own my dose to the 240 mg 1x per day again...
    It seemed to work well, but I noticed a lot of hair falling out after my shower
    When my neurologist told me a few weeks ago that in trials, the half dose was not effective, I decided to try the full dose every other day...
    Not only am I tightening up again after only 1 week, but my hair is falling out/thinning at an alarming rate...
    I was also happy to read that I was not the only person who has been experiencing the leg cramps and numb hands at night...
    I am not continuing with this med - it is not working for me...
    I am so thankful to this website and the many participants who said they were experiencing some of the things I've gone through - with the Rx company only talking about the side effects of the flushing and digestive issues, I thought I was going crazy...

    #2
    unlisted side effects

    I am one of those people with a side effect that is unlisted. I have mentioned my side effect (in another post) of grover's disease which basically is red pimple like bumps mostly on my legs.

    When I stopped the tecfidera this skin problem went away. Now that I am back on the medication these annoying bumps are back. Neuro is pretty convinced that the medication is triggering this condition.

    I have reported this to Biogen but have not heard anything. I plan to put up with this side effect because I do not have any other terrible side effects like you and so many others are reporting.
    I too am very grateful for this forum. So many helpful people.

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      #3
      9 1/2 months on Tec.

      I still get flushing no matter what I eat , or if I take aspirin, & I get severe itching / rash sometimes hives that follow the flushing . Neuro says no one else on Tec in his practice beside me , has these problems.
      I am giving Tec until 1 yr then quitting, because I've had 1 or 2 relapses since starting it.
      Tl-Tr3
      DX'07 MS- on Tysabri-

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        #4
        I get the red bumps on my legs too! I thought it was related to the recent heat wave we had in the area, but then it got cooler... So glad to know what's causing it.

        I also get cotton mouth about 3-4 hours after taking my Tec. Aside from that, it's just been mild/moderate burning/itching/redness for about 30 minutes late every morning.

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          #5
          side effects not listed

          Definitely get the cotton mouth. Not much flushing though. And of course the skin bumps are part of the side effects not listed.

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