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HELP!! What do I do now?

  • By Avesh

    HI all! I am new to this forum and am looking to be heard and seeking advice please! This is my 10th year since I was diagnosed with RRMS. I have been on Rebif 44mg for about 3 years and it came to a point to where i felt and thought it is not working for me and that my body has become immune to it. So having this in mind, i moved onto Tysabri, to which I have heard only positive things about.

    Unfortunately, I have had 13 infusions thus far and feel that not only that it is not working for me at all, but also i have deteriorated even further since i started on it. I am considering stopping Tysabri and going back to Rebif!

    I would like to know from you wonderful people if any of you experienced the same or had a similar experience and had decided to change back to your meds

    Any/all comments and replies are much appreciated

    Thank you all

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  • By Erin Rush Moderator

    Hi Avesh! I am sorry Tysabri is not working well for you. If you haven’t already, I suggest discussing this with your physician. That said, no one knows your body as well as you do. In the end, you have to find the best treatment for you. And if Tysabri isn’t working for you, you may choose to consider other treatments. Unfortunately, no matter how great a medication may be, it will most likely not work for everyone. So, Tysabri just may not be a good fit for you. I am sorry if this is the case. You can discuss going back on Rebif or perhaps trying a new treatment with your physician. I thought you might relate to this piece about choosing Tysabri — https://multiplesclerosis.net/living-with-ms/tysabri-decisions-considerations/. I will let you know that this author of this piece did choose to switch to another treatment at a later time. I know choosing the best treatment options for MS can be challenging. I wish you the best of luck! Thank you, Erin, MultipleSclerosis.net Team Member.

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  • By Spratt

    Oh Avesh, I’m so sorry Tysabri is not working for you. I loved it when I first started because I could mostly forget that I even had MS for a couple months after I started. Then it began to not work well for me either. I even started having infusion reactions. My neurologist ordered a blood test to see if I had developed an antibody to it. And I had, which meant I had to stop this medication. So…was in the same boat as you. I hope you are able to find a medication that works well for you. I will start a new one in a couple weeks. Best of luck to you!

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  • By Ashley Ringstaff Moderator

    Avesh, Sorry to hear that Tysabri is not working for you! It didn’t really change anything for me on my day to day in regards to symptoms, but it did slow down my progression (aka: new lesions on MRI).

    However, I just switched to Ocrevus, because Tysabri was not working as well for me as it had, and I am also JC Virus positive.

    Wishing you all the best! Hope you can come up w/ a game plan with you neurologist.

    Best,
    Ashley R

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