Forum

Risk of PML after four years on Tysabri, now with high JC virus levels

In December, I was told that I now have a 1 in 112 chance of getting PML (having been on Tysabri for 51 months). I am keen to change on to Gilenya, but I want to do it soon, to avoid the risk of rebound relapses. Unfortunately, the first time the hospital has a slot for me to have the monitored dose is weeks away. First I have to have an interview with a nurse and they’re dragging their feet about arranging that as well. Has anyone read anything about whether your risk carries on going up if you carry on having Tysabri while waiting for your first dose of Gilenya?

Why does Barts advise four weeks between the last dose of Tysabri and the first dose of Gilenya? Is it just because they’ve done more work on this? None of the other hospitals seem to be aware of the Barts advice. I wish I had gone to Barts.

I’ve read the Bart’s Blog same as you, Sewingchick - I know no more. The Barts lot certainly do have some very clear and decisive ideas about how things should be done. I get the impression that you feel in your bones that their approach makes sense and I am sure that, in your shoes, I would feel the same. But one thing’s for sure - they don’t have all the answers either.

I hope that all goes well for you and am sorry that you are having such a stressful time.

Alison