Hi, I was looking for advice from someone who has been in a similar situation, been on Tysabri for around 5 years and now tested positive for Jcv I’ve been told by my neurologist to come Off ty but before switching dmt I need to get tested for Pml as I come under high risk. Naturally I’m extremely worried and got High levels of anxiety that I might have Pml as my status changed from negative to positive in between infusions therefore have been positive for around 6months while taking Ty and not knowing therefore neuro is testing for Pml and getting taken off is this a formality they need to follow has anyone else had a similar experience any info on this would be extremely appreciated. Thanks
You can calculate the risk using the Barts Guide.
I’m coming under high risk 1 in 125 extremely worried…
It looks to me like your medical team are carefully monitoring your condition and taking the appropriate action, although I have no direct experience of the drug.
It might be worth asking your question on the facebook page and hopefully, that will put your mind at rest.