Quote:
Originally Posted by roadaction13
Thanks so much for the words of support and information.
I know that the PML is very rare, and that the antibody test just means that at some point I was exposed. But it's still super scary to me.
I didn't know that the IR was all or mostly all people who had plasmapherisis. I think I was conflating it with the possibility of a flare happening in the first 6 months of going off drug. So it's good for me to remember not to mix them up...
ok now i have to call to reschedule the infusion...
JD
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In the US, government legislation determines a "rare disease" is one that occurs in 1/1500 patients. PML's numbers, which started off at 1 /1000 for Tysabri users, is now about 1/500 for users that have been on the drug for more than 2 years.
Testing positive for the JC virus doesn't mean you will get it. Testing negative for the virus doesn't mean you won't get it.
Just makes deciding what medication to use all the more difficult.
Harry