Last reply 2 months ago
Confused

I haven’t been on shift.ms in a while but I was also very busy with work. I was just at my last Tysabri and told that I’m JC+, now I will be put on ocrevus. I’m ok with it but I’m not sure if it will have the same effect that Tysabri had. I upset about the switch especially since Tysabri was working really well for me and it gave me a boost at the beginning. I do take medical marijuana and I work out, go to the acupuncture and see a nutritionist.

Still very confused and angry

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stumbler
2 months ago

@fabes , whilst Tysabri is very effective, it does come with the risk of Progressive multifocal leukoencephalopathy (PML). And, this increases with continued use. Showing positive for JCV antibodies is a sign of an increasing risk.

Hopefully, Ocrevus will be just as good. And just two infusions per year!


lol84
2 months ago

I’ve heard amazing stories about Ocrevus, hopefully it will really help you too… Good luck


grandma
2 months ago

I can totally understand you being confused and angry but at the end of the day it’s great that they have found a problem and are doing something about it! You should have been told what the long term problems could have been on Tysabri, they have happened and they are dealing with it the best way they know how. Stress is not good for your ms, so what can’t be cured must be endured as the old saying goes, and you might be worse by stressing about it. At least something is happening, be grateful for small mercies😜


doyles2
2 months ago

@fabes if it’s any consolation, while I’ll
Start tysabri next week, my neuros initially wanted me on ocrevus as a first DMT (also my preference, I was diagnosed in early Jan 2019) but my RRMS is quite active, with a string of relapses since august 2018, and the risk of leaving me untreated while I go through the vaccines necessary to start ocrevus was considered too high so i’ll do 6 to 9 months on tysabri (as short as possible as im also jcv+) and then move to ocrevus. Im based in switzerland and the approach here is to hit as hard as possible as early as possible with the DMTs. So, while its never pleasant to drop a treatment that’s been working for you, there’s a good chance ocreluzimab will also be effective, otherwise it would have been unlikely to be offered to me…as @stumbler noted just two infusions a year so if it goes well you’ll have more freedom for travel and just getting on with life….I’ll have to make the same transfer later this year so will be interested to know how the changeover goes for you. Good luck.


fabes
2 months ago

Thank you for all the responses. I was told that the risk of testing positive would increase after 5 years, I was lucky that my doctors are on top of it and she told me right away. She was also quick to let me get on ocrevus on my next treatment day. I worry that it won’t work as efficiently as Tysabri does, but I will try it and see how I feel once I’m on it.

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