after having had ppms for 23 years i tend to get jaded and dismisive of anynew potential treatment that appears,not that many do appear for ppms,i suppose its a protective thing to save me from getting upset or down ,so should i get excited about ocrelizumab or not ?? the way it looks to me is that even tho its now got a european licence and is used in the usa im too far gone for it tohelp and thats even if nice do allow it baring in mind its cost,any imput from anyone would be great,
from what i understand “inflammatory activity” is a requirement. Ridiculous in my opinion. However, there is not age limit on the drug so if I were you, I’d push your neuro to prescribe it. I’ve heard of neuros prescribing DMTs to PPMS patients in the past, none of which have been shown to have any effect, so I don’t see why they shouldn’t prescribe Ocrelizumab. There are more treatments in the pipeline, a neuroprotectant called Ibudilast slowed brain atrophy by 50% in trials, that’s more than ocrevus. Ibudilast should be available to everyone because it doesn’t work by suppressing the immune system, it protects the nerves instead.
not sure whats meant by inflamatory activity surely everyone has that thatswhy we have symptoms.ive been asking for years to have a regular mri scan so that one year could be compared with the past one to see progression but ive always been refused that decision might now scupper my chances of getting ocrelizumab,i do still mainly walk with aid of my stick and furniture at home but use a wheelchair outside,anyway im due to see my neurologist in 4 months so il ask him then
oh no, there’s much less inflammation in PPMS. Inflammation causes symptoms but after a while it’s purely neurodegenerative (SPMS and PPMS) in the early stages there is some inflammation though. This can be tested by using gadolinium in an MRI, if your lesions enhance that means that there is inflammation, if not then there probably isn’t very much. That’s brilliant that you can still walk with a stick at home after 23 years. Don’t give up, demand an MRI. Anyway, Ocrevus still hasn’t been approved by NICE, some people think that they will approve it for RRMS, but not PPMS as the benefits are not as good for PPMS. This is ridiculous in my opinion and i’d be furious if that was the case