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Has anyone quit Tysabri?

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    Has anyone quit Tysabri?

    my husband has been on this for 2 years. we assume it is helping but who really knows? his fatigue and leg weakness have increased during this time, also progression in balance and cognitive issues, perhaps. he is ready to call it quits with the meds and ramp up the diet (wahls/paleo). afraid, though, that quitting Ty could cause immediate decrease in function. Would appreciate hearing of experiences of others. He is jc positive.....

    #2
    HI,

    It can be so frustrating and disappointing when a med doesn’t seem to work as well as it should. But as you said… who really knows how well it is working? You may be thinking that you would only know if Tysabri was fairly effective if your husband discontinued it and became worse. Impossible to know beforehand.

    You mentioned possibly quitting the med and ramping up with diet. But couldn’t you proceed with the diet plan before quitting the med? Who knows but that combination might be the most effective treatment for him?

    A diet plan is a huge commitment, Wahls included. And then, too, it is something with varying degrees of success in different people. Maybe you could start out with small but meaningful changes such as adding a green smoothie daily. I know it sounds trite but you never know if it can make a difference unless you try.

    Sorry I don’t have personal experience with stopping Tysabri but hopefully some who do will post their comments. Often people who stop Tysabri experience a significant rebound of MS activity. We have to account for that possibility and have a plan in place.

    I realize this post probably isn’t much help other than the comfort you may receive from the knowledge that others truly empathize with you in the difficulty of treatment decisions having faced them as you and your husband do.

    Best wishes for your success. Be strong, others care for you as you care for others. Do know that.

    Comment


      #3
      thanks for the reply, and this is sage advice.

      maybe we should stick with the 'ramped up' diet for a few more months.

      we have been doing "green" smoothies, but they could have a greater proportion of greens. we can try to cut out all grains, not just the gluten ones. we can cut out beans, which we still have had occasionally. ok deep breath, saddle up!

      thanks so much for your kind words of support!

      Comment


        #4
        I quit Tysabri suddenly (due to bad blood work results)

        My MS is worse now.

        I have on and off paralysis, vertigo, headaches, and MS Hugs almost every day now. Ulcer on my foot appeared out of nowhere.

        If it wasn't for God's grace I would have committed suicide.

        I HATE Tysabri.

        I wish I'd never taken it.

        Comment


          #5
          thanks for letting us know; it is so scary. hope you improve soon!

          Comment

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