Ocrevus findings...

Is anyone on this drug? Any thoughts? Findings on it?
It is meant to slow progression.
How do you know if it’s working? Or how bad you may have been without it?

My understanding of all the DMT’s is that you won’t really know for several years whether it’s doing anything for you, but I’ve heard great things about Ocrevus from the people who’ve stayed on it. I don’t think there’s really any way for them to tell how bad you’d be without a DMT.

I stopped using Ocrevus for a number of reasons, but the manufacturer’s staff was really great! They called me before and after my treatments and checked in with me in between to see how things were going. They were quite friendly and helpful.

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I’ve just started on Ocrevus.
I’ve had PPMS since 2013, and since ‘O’ has been available on the NHS for newly-dx’d patients of PPMS, I enquired about being on it. There are a few conditions you have to pass before being considered. The first being, you have to be newly dx, meaning you have to been dx’d within the last 15 years. The second, you have to be able to walk 20m, with or without aid. Once you have passed both conditions, you’re neurologist will then consider you for recommendation of ‘O’.
‘O’ is given as an infusion in hospital, the first dose is given in two halves, two weeks apart. The infusion is in three parts, the first is pre-meds; paracetamol, to counteract any headaches; a steroid and antihistamine drip, to counteract any allergies. The next is the ‘O’ drip, and lastly, a saline flush drip. You might also have an anaphylactic shock during the process, so an anaphylaxis could be administered. The process can take 5-6 hours and other minor side-effects to bear in mind are thirst and frequent visits to the toilet. So drink plenty of water during the infusion.
The full dose of ‘O’, is six months after, and then every six months thereafter. The process should get quicker after time, I’m told. I was lucky I guess, no major side-effects, during and after both infusion’s.
Hope this helps you with some answers, any questions, will try to answer as best I can.

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Thanks. I am on Ocrevus also with PPMS. Will have my 3rd lot in Sept. But just seem to be deteriorating fast at the moment…so was wandering how I would know if it was helping. I guess I wouldn’t know how bad I’d be without it…

It maybe something that you need to discuss with your MS Nurse, who may refer you back to your neurologist.

If I was you, that’s what I would do.