Last reply 1 year ago
OCRELIZAMAB… is it worth the wait?

So Ocrelizamab is the first drug to get the all clear for PPMS! i have PPMS and now have to wait for the UK to give it the all clear to prescribe it… maybe a year to wait. i have been walking with a stick for a year and a half and fear this time next year i will need 2 sticks or a chair. Has anyone tried Ocrelizamab? is it worth going abroad to get an infusion while i wait?

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merfield
1 year ago

I’m PPMS too and I’m mostly in a wh/ch, or use a walker or hang on to my partners hands to get about. My concern about going abroad for an infusion would be the probable adverse reaction of my neurologist & MS nurse but I absolutely understand why you would want to. I just wonder where you would stand if any problems arose. I don’t mean to sound negative but I think it’s better to point out what might happen. Best to be aware. It’s very very frustrating that here we have to wait, while its already approved in the US. But this is only one opinion. Good luck with whatever you decide. It’s a dilemma we should be having to face.


merfield
1 year ago

Meant to put its a dilemma we should NOT be having to face….sorry, typo!


ashory
1 year ago

I would certainly be looking into the viability of the option.

What are the expenses, can you get there, how long do you need to be there, is it safe, etc. and if it all checked out I’d probably look into moving forward if it was going to get me the treatment sooner.


edmontonalberta
1 year ago

I live in Canada; am waiting for Health Canada approval of Ocrelizumab. My Neurologist said it had a 50% success rate during trials. No idea the definition of success; did not ask since I hate false hope…

Good luck!

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