@shocked 

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shocked

Im back

Been a while since I posted to the group I felt bad asking questions without a diagnoses. Well I don't feel bad anymore after a long year and a half I was Diagnosed on Feb 28th 2019 with PPMS. They have asked me to consider Ocrevus I'm doing my own research I don't want them to pressure me they were not that happy they being my MS nurse when I said I wanted to talk to the people the use these drugs not the pamphlets from the drug company. I'm not find many people with PPMS is this very new for the form? As I understood there was no treatment for PPMS. One other question is it true that getting PPMS after 40 usually leads to graver disability quick? Any answers from you guys will help much more then a nurse who dose not have to deal with this personally. Thanks guys I hope this finds as well as you can be. :)
@Rivka

Do I say “welcome”? It’s a club we don’t ask to join, but since you had those long long months of wondering, there is often a huge relief to know what it is and give the monster a name. A collar and leash would be nice, too, but at least a name. So I have RRMS not PPMS and on rebif, but again, just a quick hug and warm thoughts to you.

@DominicS

Gosh, if you have PPMS and are offered Ocrelizumab I'd bite their hand off. PPMS sufferers in the UK feel very let down that RRMS can get it but PPMS can't. It is one of the very few drugs that have a demonstrably positive effect in PPMS. Doing your own research is fine as long as you are comfortable deciphering and interpreting clinical trial results, have at least a basic understanding of trial design, recruitment, statistical analysis, the submission for licensing requirements and, most importantly of all (I think for the average guy/gal) is how to interpret a drug data/safety sheet. They look terrifying for even the most benign of drugs (Acetominophen - read that one) and lack any contextual data about utility versus risk and so on. I am on Ocrelizumab with RRMS, started in Jan and for me I felt nothing and have had no adverse events at all from infusion to now. I do know that it is busy kicking the ass of my MS. That I can be sure of. This guy has a great YouTube channel - https://www.youtube.com/watch?v=xROT3Uk7Z3U