hi all, I am meant to start Tysabri soon and the more I read about it the more scared I become. I have 1-2 relapses a year and I guess I feel like the risks with Tysabri of PML/disability/death are really high so surely a relapse twice a year is better than those risks? Just really scared and not sure what the advice is or what to think/do. Many thanks!
Before you start Tysabri, you’d usually (always) have a blood test to check for antibodies to JCV (John Cunningham Virus).
Only someone who has the antibodies to JCV can contract PML. Even just being JCV positive, there are gradations that make it more or less likely that you’d get PML and these would be apparent from the initial blood test.
Additionally, no one gets PML until they’ve been on Tysabri for at least 2 years. So even being in the highest risk category should mean you could take Tysabri for 2 years without it being a massive risk.
Have a look at: https://www.mstrust.org.uk/a-z/jc-virus-and-pml and talk about it with your MS nurse. I suspect you’ll find once you’ve had the blood test, your risk will be clearer, and you will be able to make a more informed decision about whether to take Tysabri or not.
Sue
You can calculate the risk by using the Barts Guide.
http://www.clinicspeak.com/understanding-pml-risk-on-tysabri/