Swagmantha

201d

I’m supposed to start treatment for Multiple Sclerosis in 2 weeks, my doctor is recommending Tysapbri but i’m concerned about the risk of PML. anyone have any medication recommendations/experiences?

Natalizumab

Generalized pain

Multiple Sclerosis (MS)

Tysabri • Type: Injectable

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Top reply
    • Fif

      84d

      I am slated to start tysabri soon and my Dr. From Johns Hopkins told me that the risk of PML is very low and that with regular blood tests and by knowing the risks this is something that can be avoided by a long shot. She told me that even people who are at a high risk for pml (people positive for JCV who wouldn't use tysabri) are actually sometimes put on it so they can accommodate annual vaccines which is how they were proceeding with some patients during the pandemic. So taking tysabri even while JC positive is possible but it should be closely monitored by a physician. The same provider recommended that I get MRIs of my brain cervical and thoracic spine 6 months after my first dose of tysabri. I think it's part of being newly diagnosed (01/01/2023.. worst new years ever, lol) but also making sure I don't have anything new going on upstairs. Good luck!

    • tiff0310

      185d

      I had to opt out of Tysabri bc of PML also. I take Ocrevus now instead. What options has your doctor provided?

      • Swagmantha

        185d

        @tiff0310 How have you liked Ocrevus? It is one I have been looking into along with others like Aubagio and Kesimpta

    • WereBear

      101d

      I have my treatment consultation tomorrow!!🙏 I've also been recommended to Tysabri, but as well the PML is throwing me off also. I've only just been diagnosed, and the treatments confuse me. I'm worried..😥

      • Swagmantha

        94d

        @WereBear That is literally exactly how i’m feeling, glad to know i’m not the only one! good luck ❤️

    • MSGirl

      94d

      I've taken Tecfidera for about 6 months and have been fine on it. Haven't experienced any side affects although the blood tests every three months are a pain

    • BabyBells

      91d

      I’m currently on Tysabri. It’s been highly effective to keep my MS in check. I don’t really like it though because I get so tired after. The PML thing is scary but your doctor should closely monitor your JC virus which is thought to cause PML. I think legally they have to follow very strict safety protocols on that

    • Fif

      84d

      I am slated to start tysabri soon and my Dr. From Johns Hopkins told me that the risk of PML is very low and that with regular blood tests and by knowing the risks this is something that can be avoided by a long shot. She told me that even people who are at a high risk for pml (people positive for JCV who wouldn't use tysabri) are actually sometimes put on it so they can accommodate annual vaccines which is how they were proceeding with some patients during the pandemic. So taking tysabri even while JC positive is possible but it should be closely monitored by a physician. The same provider recommended that I get MRIs of my brain cervical and thoracic spine 6 months after my first dose of tysabri. I think it's part of being newly diagnosed (01/01/2023.. worst new years ever, lol) but also making sure I don't have anything new going on upstairs. Good luck!

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