Last reply 1 week ago
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. 🙂

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rivka
2 weeks ago

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
2 weeks ago

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


highlander
2 weeks ago

@shocked
It’s gonna sound daft but at least you have something with a name to point to now rather than they think xyz is wrong.
It helps opening other avenues of assistance.
Keep smiling it could be worse…


watsoncraig
2 weeks ago

Just think how elite you are.


shocked
1 week ago

Thank you for the replies guys, I’m sorry to hear this is not approved in UK as it seems to be first option here in Canada I had my diagnose 4 mins tops before they asked me to consider that treatment. 🙁 So sorry they are behind in the UK.

P.S thanks for the welcome, I am semi relived I know what’s wrong at least I think I am..lol


vixen
1 week ago

Hello @shocked, there are lots of posts on here about Ocrevus which, as said above, we are hoping will be approved soon in the U.K. Me and my sister were diagnosed almost at the same time 2 years ago, me with RRMS and she with PPMS, aged 41. The irony of our situation is that I can get Ocrevus, and she can’t! I don’t think there is any pattern or prediction for progression as every case is different. But big focus on healthy diet, exercise where possible and rest will help anyone. Good to meet you 🙂


shocked
1 week ago

Thank you @vixen, sorry to hear about you and your sister and hope the approval comes threw for her soon.

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