NICE finally accepted Ocrevus for treatment for PPMS

Everyday living
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this is great news for people just starting out on their journey with PPMS.

Does this also mean they can help people with SPMS?

It is exciting the first treatment for Primary Progressive MS, but you have to be EDSS scale under 6.5 and only had PPMS for 15 years. Trouble is a lot of people have had MS for a long time before they were diagnosed.

Still this is wonderful news for a lot of people.

I have posted here as a lot of PPMS use the everyday and not the PPMS forus regularly.

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I have my yearly visit with my MS Nurse next week, Ill be asking this question but I won’t hold my breath.

Jan x

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Yes exciting times, as crazy chick says…

I wheeled into the office this morning in my chair and was greeted by a couple of “did you see the amazing news” “they have found a cure for your MS”.

It is stuff like this that gets to me at times, it will help a lot of people and this is great, but we all know that in MS “one size certainly doesn’t fit all”, and without reading and understanding the background/details it gets taken to the extreme.

Charlie

(SPMS 25 years, EDSS score 7)

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What is confusing is that looking to the future there is no difference between someone with spms and someone with ppms – the person with ppms never having had a remission whilst the person with spms has had relapses and remissions before reaching the spms stage. Also could it be that the person dx’d with ppms has in the past had m.s.‘episodes’ from which they’ve recovered but at the tome didn’t realise they were m.s. episodes.

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I totally agree. I am not convinced I have PPMS as i have had some weird things. 2004 i was off work for six months which really when i think about it was a classic relapse with someone with MS, 2000 I had the first symptom, 2002 I had odd things really on going until 2006 when the day before my collapse i would barely walk round a car boot my my legs were so stiff with spasms ( i know now) and cramp. then in the morning I couldnt get out of bed my legs were so bad.

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have we now reached the point where everyone dx’d with m.s. will get treated? There are already drugs for the RRMSers now we have a drug for the PPMSers.

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