Being on Tysabri while JCV+....How do you think about the risk?
Hi everyone, I've had MS for about a year and half and thankfully am in good health, but despite no symptoms my most recent scan showed a lot of activity, so I'm now on Tysabri.
I'm JCV+ unfortunately, which means my risk of developing PML will increase to 1 in 5000 within the next two years, and then more after that in years to come. Tysabri seems to be working well for me (in that I've been symptom free since starting and don't mind the infusions) but the PML risk is really messing with my head. 1 in 5000 doesn't feel small enough for me to relax, and I really don't know how I'll cope (anxiety wise) if/when it increases to the hundreds!
Is anyone in the same boat and if so, how do you think about this risk? Any insights greatly appreciated ( :
I’m on Tysabri with a medium JC virus titre which the calculator (Barts I think?) puts me at 1:330 risk by the end of my second year- too high! I’m still in my first year though so my risk is currently 1:10000. My risk of increased disability through an MS flare if I wasn’t on Tysabri would be much higher, so this is how I justify it in my head. I used to think about it a lot, but 9 months in I have stopped worrying so much.
I was previously on Tysabri. My doctor checked my blood regularly. I trusted him to give me solid guidance on my meds. I wasn’t even thinking about the risks. I came in for a dose and they just checked my JCV levels and there was a ten-fold increase. He let me take it since I was still well below threshold but said he would recheck to make sure there wasn’t an error. Turns out there wasn’t an error, he took me off that and put me on Ocrevus. I hope you have a good relationship w your doc. Would they give you solid advice based on your comfort levels and acceptable risk level? I only ever saw a direct benefit from Tysabri. Wish I could still be on it. Good luck.