Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Something about the inbreed JCV virus (you get as a childhood illness that remains dormant in your system) somehow Tysabri activates PML by allowing JCV to cross the blood brain barrier where PML is derived from.
The good news is that now they have a JCV leveling blood test that shows what percentage of risk you're in for PML.
Right about 32 Tysabri infusions (dosage infusuion once per month) the risk for getting PML increases.
For that reason once I was at 43 infusions (3.6 years) I stopped taking this miracle drug (70% efficacy slowing progression) and went on Tecfidera (twice daily oral pill) for 18 months after the Tysabri wash out period (3 months)
Then I took the new leveling blood test and learned I was in a very low percentile of PML. With that I decided to go back on the wonder drug Tysabri last February.
If you decide to re-start Tysabri your infusion count goes back to #1.
With that when I get back up to infusion 32 range I will take the JCV leveling blood test again to see if I'm still at a low level for getting PML.
If it increases to a more high level of risk then I may opt to stop taking Tysabri again for a period of time to then start over with my infusion count.
Who knows in 2 years some new treatment may be available.
We'll see... "