Has anyone tested positive for the JC Virus during their treatment with Tysabri, Tecfidera, Gilenya, or Ocrevus?
If so, did you continue on that treatment or switch to a drug that does not carry the PML risk?
Devin Garlit Moderator
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
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
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?
I was on Tysabri for years and agree with that it's a literal life saver! I can't say enough wonderful thins about Tysabri, it really is a wonderful drug. I am no longer on it because it wasn't working for me anymore and my JC results went from 0 to 345 in 3 months which my Dr. Thought sure was a lab error. I went for a re draw a few days later and the results were in the low 600s. Dr said he'd never seen anything like it. We agreed it best to try something else since I now (unlike when I started Tysabri) had options. Ocrevus made me ill from the first infusion, worse with second & I stayed that way for 5 months. I'm now on Mavenclad & am very happy with it, infact I start year two next week.
Lori Foster Member
I am so glad you found something that helps again without making you so sick, @kimmyk. Thanks for sharing! - Lori (Team Member)