September 30, 2019
If so, did you continue on that treatment or switch to a drug that does not carry the PML risk?
Devin Garlit Moderator
October 9, 2019
I'm still JC negative, but I'll tell you my mind is already made up if/when I become positive. I take Tysabri and would continue to take it. While PML is a risk, it really is a small one. Is it scary? Of course, but the risk is low, particularly when compared to the benefits of medication. I've lived with a grandfather who had this disease, I've seen what it can do without a disease modifying treatment, it's far scarier than PML. I also consider Tysabri a literal life saver for me. I honestly don't know if I'd be here without it. Far too many people get overly worried about PML, without worrying about the consequences of MS itself.
Kim Dolce Moderator
October 9, 2019
Devin, thanks for sharing your experience and views! I hope it'll encourage others to express theirs. We have so many readers fret about PML and ask tons of questions about DMD safety. I'd love it if we could have an ongoing dialogue about it. Best, Kim, moderator
November 3, 2020
I am newly diagnosed and about to start Tecfidera. I have not yet been tested for JC Virus. I think I'd feel more comfortable knowing before getting started on treatment. Is it not normal practice to test for this before recommending treatment?
May 22, 2021
I was on Tysabri for years and agree with
Lori Foster Admin
May 23, 2021
I am so glad you found something that helps again without making you so sick, @kimmyk. Thanks for sharing! - Lori (Team Member)