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Is Tecfidera Making Me Worse?...

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    #16
    I could Have written this post myself

    Originally posted by Dreams008 View Post
    I've been on Tecfidera for 4 months now. Each day my walking has deteriorated to the point where I can't even make it through the house. I still get extreme flushing, even though studies show the side effects should start to diminish after a month. I'm talking my whole face looks like I've been out in the sun all day. I also have severe spasticity, which I'm on Baclofen for. But, more than anything, I'm just so weak it's hard to get around.

    Soooo, today I did not take my Tecfidera as a test. Believe it or not, I felt so much stronger tonight that I was actually walking somewhat normal and am able to type this with speed, as my hand was also really affecting me. I took the pill tonight, as I'm nervous to just not take treatment, but as soon as I took it, I began flushing and feel horrible again.

    I have an appointment with my neurologist next Tuesday and I plan to discuss this with her. I know I can't continue to just take one pill a day, and I'm sure she won't agree to it, and I'm also debating if I want to continue treatment. I know it puts me at risk for not being protected, but my quality of life is really being affected and if it's the treatment that's causing it, then I'm really debating whether I should stay on.

    I've done Tysabri, but being JC+, I knew I didn't want to stay on that and I had no luck with Copaxone. None of the other DMDs appeal to me. I was super excited about Tecfidera coming out, but I don't know how much more I can handle not walking. I really believe the pill is causing my MS symptoms to flare up, as I wasn't this bad before.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
    Same with me. I've been on Tec since June and I am still getting side effects. I am also much weaker. I spend most of the time in my wheelchair now. I was on Tysabri and loved it. But like you I tested positive for JC.

    I haven't decided what to do yet. I'm tempted to go off Tec but then what do I do? I'll let you know what I decide.

    Thanks for posting, I feel better

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      #17
      Thank you, thank you, thank you!

      I am in my 5th month of Tecfidera and my walking has worsened and worsened. After reading these posts I am confident in my assessment that I should stop taking it. Thank you all. I was successful taking Avonex for 8 years or so (dx in 1999) and when that stopped working, have been on Copaxone (eh), Rebif (terrible), Gilenya (no side effects but MRI showed activity), and most recently Tec (not as bad as rebif, but not good). My Neuro is waiting for Lemtrada to get FDA approval. We'll see.

      Something that has been VERY helpful to me is CBD (cannibidiol). Before anyone dismisses this as another 'pot-head cure', please know that there is no high associated with CBD and that though it is less effective than it's 'not totally legal' cousin, CBD derived from Industrial Hemp is available on Amazon, Please, for your own health, research this product as it is being used as a Cancer treatment as well as an anti-convulsive for Epilepsy. It is what "Medical Marijuana" was always supposed to be.

      -Jon

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        #18
        Had to stop tecfidera

        My tecfidera dosing ended after being on it for 8 months. I experienced hair loss, flushing,weight loss, stomach pain and nausea which got progressively worse and even went to digestive clinic because of it. (I tried all the recommended methods to reduce side effects but they didn't help. It was hard to eat a hearty meal with the pill when I was full after a few bites and had pain in my gut.) The clinic wanted to see how I did off the drug before doing anything and in the 1 1/2 months off it my stomach has gone back to normal. For some reason this drug really tears me up inside. I'm so happy for the folks who have no side effects! That was me on Avonex and Tysabri. So now I'm DMD free and wondering what to do next. Personally I prefer a drug free approach like the MS Recovery Diet or Wahl's diet and am pursuing those, but like everything else it's a challenge.

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          #19
          more info on CBD please

          Jon, please elaborate! Would like to know more about your experience with CBD and which type you use...thanks

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            #20
            Me TOO !!!

            I am going through the same thing. I started asking my boyfriend if he thought I should stop taking it. My walking has become worse. I haven't been able to exercise because my legs won't allow it. I am using walls to assist in my balance more than ever. I've been taking this for approx 6 weeks now, and am ready to give it up. I've not tried the Ampyra, any thoughts on that?

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              #21
              Try Ampyra for sure!! (Tec made me worse too)

              Hi Clubleggs,

              I got worse on Tecfidera too & have not recovered since stopping it (took from 7/14-11/14). Don't waste time on something that makes you feel even worse than MS already does. I learned that the hard way. Try something else, time is of the essence with this disease. Also, I have been on Ampyra since it was a clinical trial drug-2006 & would recommend every single MS 'warrior' give it a try! It is NOT an MS modifier by any means, you need to take it in ADDITION to your DMT like you would Baclofen for spasticity. I'm not sure how it works technically (no medical background), only that it helps ME with 'overall' nerve conduction. I no longer am able to walk but ran out of Ampyra for 4 days last year & it was TERRIBLE for me to be off of it!! I had no idea how much it was helping me until I ran out of it.

              Have has MS 21yrs but fairly new to interacting w others w MS. I don't know how to contact you directly. If you do know how to contact me please do & we can 'talk' further. Good luck to you!!

              Originally posted by clubleggs View Post
              I am going through the same thing. I started asking my boyfriend if he thought I should stop taking it. My walking has become worse. I haven't been able to exercise because my legs won't allow it. I am using walls to assist in my balance more than ever. I've been taking this for approx 6 weeks now, and am ready to give it up. I've not tried the Ampyra, any thoughts on that?
              ~jennifer
              1st symptom '94 Diagnosed 1999
              Progressive/Relapsing
              Copax/Rebif/Chemo/Tysabri/Rituxan
              Plasmapheresis/Steroids/Copax again/Tecfidera/Aubagio/Lemtrada start 10.5

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