Genentech Reports PML Case with Ocrevus - My MSAA Community

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Genentech Reports PML Case with Ocrevus

postmanjim profile image
8 Replies

This happened in a JC virus-positive patient who had stopped taking Tysabri in February after being on it for three years and switched to Ocrevus with a first dose given in April. Carry-over or not, it is something to think about before switching medications.

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postmanjim
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agate profile image
agate

Up to now the indications have been that there'd be no PML with Ocrevus. Guess you just never know.

StacyHayward profile image
StacyHayward

Thanks for the update! I'll keep watching.

erash profile image
erash

postmanjim the report says the patients doc believes it due to Tysarbi but genetech is investigating. I wonder how the doc can be so certain and also wonder about any conflicts of interest?

tombouy46 profile image
tombouy46 in reply toerash

Now I'm really curious, I'm on Lemtrada. About to start my 2nd round in July. I had been thinking to myself about not going through with the Lemtrada and asking my m.s. doc about possibly starting the Ocrevus instead. But after hearing this. I'm even more confused. I had tested positive for that JC virus a couple of yrs ago. Nobody has ever told me exactly what that virus even is. Dam. You just want to feel better and you think there may be a chance. Because of Ocrevus. And all the positive things I've heard through all the trials and studies. If anyone has any thoughts or suggestions I'd love to hear them. Thanks. Tom

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply totombouy46

Hi Tom, I don't have a link to look it up, but it is actually called John Cunningham Virus and can be looked up on the internet. I am also Positive for it. My first Neuro(which I dropped quickly) told me about JCV, then immediately wanted to start me on Tysabri, for 18 months to reduce risks. I'm told JCV is equivalent to Mad Cow Disease for humans. That Neuro was not an MS specialist and he himself just wrote me off and was not encouraging in any way.

Sukie427 profile image
Sukie427

Oh, no. I am so terrified of PML that I was hoping it wouldn't happen with Ocrevus so maybe I could switch from Tecfidera. Does anyone know whether anyone got PML during the Ocrevus trials?

kdali profile image
kdali

My gut sank when I read this. PML is very rare, only before seen in AIDS sufferers, until Tysabri. With so many people JCV positive running around and all sorts of new drugs, I'm sticking to believing it's because of Tysabri! MS community needs a win!

BillD999 profile image
BillD999

Here is an article about this -

multiplesclerosisnewstoday....

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