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    #1

    Ampyra - Anyone Worse after Taking?

    I am in my third week of taking Ampyra 2x daily and I feel worse. I can hardly walk, my whole body is going numb and I am experiencing the worst fatigue I've had in a long time.

    I'm seeing neuro tomorrow and will request MRI to rule out exacerbation and PML (I'm on Ty and JCV+). The only change has been the Ampyra.

    I know it is supposed to take 6-8 weeks to become effective, but is is supposed to knock you on your behind before you feel better? All I can find online are great results, so I'm feeling very alone.

    I should point out that this was my last hope for fatigue and the fact that it made it worse is so awful. I've done Provigil/Nuvigil, Adderall, Supplements. Nothing can break through my fatigue :-(

    Thank you!
    Melissa Goerke
    [I]DX 7/2/10, Copaxone then Avonex, started Ty 9/13/11, JCV+ ended Ty 9/13, started Gilenya 12/13 Blood Pressure skyrocketed, started Tecifdera 4/5/14 - fatigue beyond bearable and symptoms became worse. Rituximab 8/8/14.....waiting for the miracle. I WANT MY TYSABRI BACK!!!
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    #2
    Tried Ampyra for gait improvement about 2 years ago. Got 5 weeks into it before the mind crushing fatigue returned. Called my neuro and stopped taking it immediately. Took about a week to get over the fatigue and 6months to get over the weakness that came with it.

    Some people swear by it but Ampyra was a bad drug for me. Exacerbations are a potential side effect of Ampyra.

    I use exercise for fatigue relief. It took a couple of years but, except for the Ampyra induced episode, I rarely suffer from fatigue now.

    Comment

      #3
      Is the Ampyra working?

      My doc asked me this question when I had an issue with a possible drug interaction. I've taken this med twice a day for several weeks now, and I feel like I am not only seeing no noticeable improvement but instead a worsening of an issue I'm having with urinary retention, balance and noodle legs and arms. It was mild for awhile, but these past few weeks these issues have progressed, it is coincidence or is this med that my doc says improves nerve conduction working too well?

      I don't know how long I should continue this med to see if I will eventually get a benefit of improvement, or end the drug (with my doc's knowledge and guidance, of course).
      Possible MS 1993, RRMS, Dx 2007, SPMS 2013. Avonex - Oct '07 - Jul '12, Gilenya - Sept '12 to May '13, Tecfidera - June '13 to present. You see things as they are and you ask why..I dream of things that never were and I ask 'Why Not?!'

      Comment

        #4
        Ideas for fatigue that help me

        I so know what you mean and can relate I have had MS 23 pf my 46 years of life One thing that recently helped is by vyvanse (lisdexamfetamine dimesylate) 30mg. Make sure you are eating well, taking and asking for help when you need it, getting lots of sleep ( I take 3 mg melatonin at night and it works better than any pills my doctors have prescribed because there are no side effects or grogginess in morning).

        Nap when you are tired and stay hydrated. Hang in there. There are a lot of ebbs and tides but continue to take care of yourself even when you are well. Get your Dr. To give you a vitamin B12 shot every month and take 5000iu of vit D and fish oil capsules Avoid alcohol and exercise three times a week no matter how tired you are - even if it is only for ten minutes as that helps with the serotonin and try and get sunshine every day for twenty minutes without sunscreen.

        If you are not somewhere sunny get a small Philips GoLite or something similar. All these things help. Best of luck to you. Try and think positively as hard as that seems and always allow yourself a few tears and then think "it can always be worse.". Oh and don't watch the news but read good books, watch shows that make you laugh and lose friends who aren't understanding or supportive. No dead weight!

        Best of luck to you.

        ** 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. **

        Comment

          #5
          Originally posted by abcima View Post
          Try and think positively as hard as that seems and always allow yourself a few tears and then think "it can always be worse.". Oh and don't watch the news but read good books, watch shows that make you laugh and lose friends who aren't understanding or supportive. No dead weight! **[/COLOR]
          Abcima! This is one of the best posts I have seen! Thank you!
          Kara

          Comment

            #6
            All meds work differently for different folks

            I was having extreme gait issues and had gone up to 60mg of baclofen, ampyra helped me tremendously.

            I am off the baclofen now, but I've never had much fatigue to begin with so the conditions affect us all differently. At least you were able to try it and now you know.
            Diagnosed 9/2010, copaxone 10/10, avonex 10/12

            Comment

              #7
              Fatigue

              My issue is fatigue too.. Tried all those meds too.. No luck.. But been better on acetyl l carnitine and alpha lipoic acid... Search for Shashi on here.. Saw it on her post.. Buy it from puritans pride.com.. Super cheap.. Good luck....

              Comment

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