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Tecfidera the drug for you? Great! Not for me...

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    #1

    Tecfidera the drug for you? Great! Not for me...

    (Continued from my Copaxone nightmare post)

    So my brain is being killed off slowly but surely.
    Wait for the Tecifidera post..............

    So here I was 3 months on this Tecfidera.
    Cannot eat or drink hot or cold food/liquids because my teeth are killing me.
    I cannot stand the sight of food or drink because it reminds me of what it feels like to put it in my mouth.
    Relapsed within my 3rd month. Thanksgiving day sitting on an IV. Felt great after that. Who doesn't? I manage to get a lot of things done that have been backlogged due to me being sick.
    Around 45 days later lo and behold, another relapse! Another IV drip. 5 days not as good as before. So I hit several medrol packs..pretty much double dosing (yes upon Dr. orders)

    Insane "back pump"
    Teeth killing me, cannot eat, dropped 25 lbs that month.
    I thought it may be interacting with other meds so i cut back on it.
    When I did all started to get better.
    Received notice that it has no reported interactions with drugs I was taking.
    Receive my new 90 days supply and I'm sitting here staring at it.
    I think I'm done with this too.
    IMO these "approved" meds are killing me.
    So if Tecfidera works for you let me know.
    Tags: None
    #2
    tec no good for me

    My doc changed me to tecfidera and 6 mos in i take a steroid treatment and it doesn't help at all, they usually make me feel better but while on tec it is just a waste in my opinion. I was doing good until my meds changed. Hope it helps everyone else.
    Disabled and going to school at the moment to make the best of my situation.

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      #3
      I understand how you feel.

      Haven't taken Tec ... but I did Rebif and Copaxane for 1 1/2 yr each. I thought I was going to Implode and die. The side effects were terrible for me. I have been off dmd 's for 10 yrs now. MS still suckered but it's much more manageable than the daily shots.
      Karen

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        #4
        tecfidera did work for me the 19 months i was on it. my mri was good & i didn't have any exacerbations. but now i truly am "immuno-compromised" (starting to Hate that term!) because it caused my lymphocyte count to plummet. now i have shingles...oh the joy!
        MS dx's 2000
        Tysabrian
        ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

        Comment

          #5
          It's been some time that I posted.
          I still haven't gotten over the Tecfidera GI issues. Following the stop I still have major lower back-pain. I have constipation occasionally. I cut out all pain meds after the colonoscopy flush. After all, my pain was due to GI issues. The flush proved that. Neuros couldn't look at the MRI of my guts? "Oh its neurologica."
          Even if I go to the restroom (#2)...my lower back still kills me. As if I have something wrong with my back muscles or between my hips. But I take Milk of Magnesia and that all clears up. Usually I can still go but its like bypassing something stuck. Intestine stones? hahaha. Not funny but whatever.
          I am taking probiotics now and of course eating healthy. I have always eaten healthy but I felt the need to say that because it is not just the probiotics.
          Thank you Tecfidera!
          FAIL!

          Comment

            #6
            I'm off it too-also immunocompromised. Shingles at Christmas-still a bit itchy-and pneumonia twice this summer.

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