@Ancy 

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Ancy

Any advice on Tysabri fears

Hi 👋 first time poster here 😀. A brief (I hope) background. I was told I had tumours on my brain and spine which were highly likely to be cancerous. Cut to 'downgrade' (not my words) to MS. I am under a neurologist who said I need to forget the notion that all the different types of MS were the way to view it. He said hes put me under the bracket of rapidly evolving MS and to start treatment with Tysabri. When I mentioned my worry about PML and wanting to be tested for JC virus prior to any treatment he said being tested for JC virus wasn't something he was aware off. My care so far has made me uncomfortable and I've lost any confidence in being treated and monitored by the team. I had to have 2 lumbar punctures as my spinal fluid was originally lost. I've seen lots about ocrevus and just wanted any advice about requesting that over Tysabri. My only problem with Tysabri is the risk of PML. I have had health anxiety for over 15 years, that coupled with fear of not being monitored correctly is just making me feel lost and alone in my diagnosis.
@Stumbler

@Ancy , well, Tysabri is a monthly infusion, ad infinitum. Or, until the regular monitoring (yes, your JCV status and titre levels) suggest that a change of DMT would be advisable. On the other hand, Ocrevus is half yearly infusions, with clinical trials showing good results.

@Ancy
 

@Stumbler thanks for replying. Yeah, I was curious if everyone (or at least most) people had the JC virus test prior to starting treatment and were monitored regularly. Or how people made the decision to take tysabri over drugs like ocrevus etc just a bit lost 😕