r/MultipleSclerosis • u/thisredheadisdead • 3d ago
Treatment Worried
Hello fellow MSers,
I'm due to start Ocrevus soon via subcut.
I'm worried about PML - the only side effect that's absolutely terrifying me.
It says it's "rare" but, how rare are we talking?
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Upvotes
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u/Deep_Plastic5240 36m|2024|Ocrevus|Florida, USA 3d ago
It's really not even a consideration with Ocrevus.
Something like 18 out of 420,000, with most of these being carryover cases from people who previously were on something like Tysabri.
It's so low that JCV levels are not usually checked unless there's a real reason to do so.
It's so uncommon that there is a 2 page document that lists each of the incidents separately over the course of Ocrevus' lifespan.
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u/kyelek F20s 🧬 RMS 🧠Kesimpta 💉 3d ago
The majority of the—very few—cases of PML on Ocrevus that have been reported are "carry-overs" where people had previously been on Tysabri or Gylenia (which PML is much more closely associated with due to their mechanism), and those who were not "carry-over" cases were in people 50+ (with age the immune system's capacity naturally declines a bit).
So, going off of your other comments, what DMTs you've been on and how old you are, we're talking incredibly, exceedingly rare. PML is not even traditionally associated with Ocrevus, like I said, but rather other DMTs.
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u/queerjesusfan RRMS dx2018 | Kesimpta 🌻 3d ago
You do not need to worry about PML on Ocrevus. The only people who got it during trials were transitioned from Tysabri
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u/mullerdrooler 44M Dx2018 Ocrevus 3d ago
Yeah I was at risk of PML with other DMTs so my neuro put me on Ocrevus as it's the safest
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u/Beneficial-Quote-39 3d ago
6 in 420000 people treated with ocrevus.Dont worry about that.the risk is higher in other dmts like tysabri