Tysabri and JC virus
Hi all, is anyone else positive for JC virus and still taking Tysabri?
My MS nurse says the risk of PML is the same for the first 2 yrs of tysabri treatment whether you're positive or negative for JC virus. I was only offered tysabri as my treatment (no alternatives were offered) and I've only been on it a few months since my diagnosis in Feb 2022. Sometimes my anxiety about the risk of PML is pretty bad because my titre level of JCV antibodies is high.
How do others deal with it? I was half paralyzed earlier this year so I want powerful treatment, but I'm scared.
Dear @Mel-N, I'm on Tysabri too, but am fortunate to be JC negative after 5 years. I'm sure your doctors in Canada, just like here in England, monitor your titre levels regularly. If they become too high, then they will offer an alternative DMT. Tysabri is a very effective DMT, which I assume your doctors thought was the best one for you. It will be doing plenty of good. One other thing, your JC status can change. You can go from positive to negative (and back). I did. Or it can lower as well as raise. Your doctors will keep an eye on it. Good luck, and best wishes, Jon
Hi i am JC negative but if for some reason if i was to become positive i think that i would stay on Tysabri as long as i could it really works for me. i know its a worry but you have to offset what i can do for you with having no treatment. if you are really that scared you really should go back to your MS nurse and have a good conversation about whether it is truly the correct treatment for you. the way i see it these treatments are supposed to be giving us a better life and if your scared everyday then that isnt the case. Best of Luck and i truly hope that you find what is right for you! Pete