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Terrified of Tysabri…

  • By LA703

    Tomorrow’s my first Tysabri infusion and I am scared to death. I tested positive for JC Virus but apparently the cutoff is 1.0 and I’m at 0.77. I really, really, REALLY don’t want to do this, but feel like I don’t really have a choice. I don’t want to progress any further, but I also don’t want PML either. I’m sure I’m worried over nothing, as usual but I just don’t have a good feeling about this.

    Has anyone had a good experience with Tysabri? Anything I should do or eat or drink to prepare?

    Any advice or tips would be greatly appreciated.

    Lauren

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  • By Erin Rush Moderator

    HI LA703 and Nancy! I am so sorry that no one responded to your original question! I hope your first infusion went well. Some of our community members have personal experience with Tysabri. One of our contributors has written in depth about his experience with it — https://multiplesclerosis.net/living-with-ms/tysabri-decisions-considerations/comment-page-1/#comments. Also, another one of our contributors shares about her experience with the drug here — https://multiplesclerosis.net/living-with-ms/tysabri-an-aggressive-ms-treatment/comment-page-1/#comments. Here is a basic article that covers the side effects and safety of Tysabri — https://multiplesclerosis.net/treatment/tysabri/side-effects-safety-profile-review/. I hope this helps. As you will see from the articles and comments following the articles, you are not alone! Please let us know how you are doing, should you feel comfortable doing so. Best of luck, Erin, MultipleSclerosis.net Team Member.

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  • By LA703

    I completely forgot that I’d posted this! Thank you so much for the info, I’ll look into it now.
    I’m doing ok I guess. I have some really good days in the middle of the Tysabri month, so that’s been good. I do have a lot of new pain in the limbs right after and then randomly towards the end of the month. I’d rather not take any of this but, it is what it is I guess.

    Thank you so much again for the links!

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  • By Erin Rush Moderator

    Thank you for the update, LA703! I am glad you are having some good days with Tysabri — I hope you keep getting more and more of those and LESS of the not-so-great days! Thanks again for the update and for being a part of this community! Best, Erin, MultipleSclerosis.net Team Member.

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