At the end of the appointment I asked the MS Nurse is there a new miracle cure for me and she tells me about Ocrelizumab
http://disableddon.blogspot.co.uk/2018/02/new-hope-for-primary-progressive.html
if it was a wonder drug wouldn’t she have spurted it out as soon as I got there?
XXX Don
Good for you Don. Don’t let them get away with banal platitudes. We want Action!
Go Don, you would think so wouldn’t you. She should have done.
This site informed us of the new drug a few weeks ago, but as you know, in the UK, we are reliant on NICE to get it on prescription & it looks like PPMS sufferers won’t be offered this new drug but RRMS patients will!
PPMS affects our whole quality of life, we are desperate for relief, yet it seems only RRMS will have the go ahead.
Chrissie x
This is the view of the Barts Blog, which is an informed guess at the moment. Multiple Sclerosis Research: Newsflash: the wait is over ocrelizumab finally gets its EU marketing authorisation
I think the Barts guys have the most likely scenario. And it’s just what you expect. I’m so sorry for all you PPMSers. It’s taken long enough to come up with something that ‘might’ help people, even just the newly diagnosed PP people. It’s like giving with one hand and quickly snatching away with the other.
‘So, we thought you people with PPMS were missing out on the DMD front so here’s one that could help a bit. On second thoughts, let’s just give it to the people who already have 14 DMDs to choose from!’
Sue
Bloody’ell!!! So there’s nothing to: help, to stop or slow down PPMS except this new promising breakthrough, specifically a breakthrough for PPMS sufferers. Ocrelizumbab is found, tested and seems quite a positive step for PPMS patients.
But then NICE (which is a contradict in terms, and should be called FLAMIN DIFFICULT) decide NOT to allow it on prescription to the very patients it could benefit, namely PPMS. But NICE “think” it will benefit RRMS who thankfully already have access to a host of DMD’s.
With only a tiny % of the UK, I think it’s a mere 20,000 people out of 65million residents in the UK who have PPMS in an equal 50/50 split between men and women, suffering a limited quality of life will once again be put on the back burner and NOT offered this promising Ocrelizumbab.
Whereas the approximate 125,000 RRMS patients WILL most likely have access to it!
Blood is boiling, fury is steaming at the clear discrimination against the lower amount of ignored people withPPMS!
I wonder if this is the NICE attempt to leave us untreated and without hope of bettering our quality of life because, let’s face it, our future isn’t exactly bright is it.
I feel a strong protest coming on, maybe if a member of the NICE board had PPMS, their attitude towards the few would change.
Chrissie x
As I said I am a cynical old sod and I knew I wouldn’t be eligible for it. They want to get rid of old moaning gits like me and want to see us suffer before we go.
Don