I have been on ocrevus starting my fourth year. Even though I have had no new lesions I have become A LOT less mobile and lost most of my dexterity in my arms and legs. I can’t walk as far or have the ability to get out and do things without resting after just a short bit. I didn’t know what to think about it all, however I found a group on fb that has had the same experiences with Ocrevus and has gotten off it and went through therapy and gotten better. I’m going to address it with my neuro and if no results I’m going for a second option. I’m sick of being a trial dummy for these medications. We feel bad enough. I would rather just live out my life without any immunosuppressants other than the disease that something that’s going to take my walking ability away quicker. How does anyone else feel or think. Seems like mobility issues are coming up a lot more with Ocrevus. Stops the lesions but takes mobility away.
I’m no expert but it’s my understanding that as you say, DMTs decrease the rate at which new lesions appear ( some are more effective than others) but they aren’t going to stop the worsening of existing symptoms. I dont understand it fully but old lesions can ‘smoulder’ as a result of ‘low level’ continuing inflammation.
I’ve been on Avonex for years. No new lesions but mobility is a lot, lot less
The terminology is key.
Ocrevus (ocrelizumab) is licenced for use with PPMS and also RRMS. For PPMS, the claim is that 70% of users report a slow down of progression. So not a cure and not a halting of progress, so the question has to be “compared to what?”
There’s no control condition as a baseline as there’s only one of you. Perhaps you would be in a worse state than you are now if you hadn’t been on the med, but how would you know? It’s very subjective though they do attempt some indexation (EDSS scoring).
For what it’s worth, I went on a clinical trial for a BTKi drug. It seemed to work, as in it appeared (subjectively) to slow things down. Unfortunately, it also provoked liver toxicity so I had to come of the drug after just 4 months. A few months later I was put on ocrelizumab but dropped it after 3 rounds: I wasn’t convinced it was working but worse, it made me immunosuppressed and I succumbed to UTI’s and other infections which dragged me down, so in conjunction with my MS consultant, I came off it. I still think it was the right decision.
So, in short, ocrelizumab doesn’t work for everyone.