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Scully

Positive news for Primary Progressive ..

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Sleepy
Scully

Exciting news.....except the NHS may not fund it....drug is called Ocrelizumab

http://www.bbc.co.uk/news/health-38392548

 

We shall have to keep an eye on it eh?

 

Scully

x

 

 

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Bernadette

Why never Secondary Progressive?!

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Sleepy
Scully

It may well cover that as well.

This is the ONLY ever drug for PPMS, there has never been anything for us in this very small minority...

course whether the NHS will ever fund it is another issue!

Scully

x

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Sluggish
Marina

I've also never understood why it's for RRMS and PPMS but never makes any mention of SPMS. Maybe it's assumed it'll work for SPMS as well?

 

Either way, some clarity about it should be made. Otherwise us SPMSers might really feel left out.

 

Prof Giovannoni has written about the trial results here:

http://multiple-sclerosis-research.blogspot.com/2016/12/researchspeak-how-does-b-cell-depletion.html


Marina

(belated DX in June '05, SPMS)

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Nick

There was some mention in the earlier trials leading up to this one that SPMS subjects had been included (OPERA I and II) along with RRMS. Doubtless we shall hear more in due course. Great News in any event, lets all keep our hopes up.

 

Nick


Just another Warrior...........

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Nindancer

With all due respect to people with RRMS (please don't throw stones at me!), you at least get a variety of DMDs before SPMS kicks in so can have long periods of MS inactivity and hence progression, whereas PPMS starts disabling you from the very start.

Ultimately. it's a progressive disease and it's about time something became available to actually help PPMS patients - BUT ultimately, a cure is what we ALL need!

Sonia x

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Nick

Absolutely agree Sonia!

As somebody who has been on a SPMS trail that was ultimately inconclusive we can't help but applaud another trail which at last seems more positive in the particular area of PPMS. I don't believe we shall see a sudden 'breakthrough' in 'cures' for MS. Rather, what we are seeing is a rapidly developing understanding of the brain's weakness to conditions like MS. This leads to better solutions which are now starting, at long last, to emerge. The pressure is now on, politically, to make these DMD's availible on the NHS, perhaps that is where we should be pushing for change.

 

Nick


Just another Warrior...........

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Skippysprite

I agree it's about time us ppms got some help, and I do think for newly diagnosed this will help for their future. I do, unfortunately, think for the likes of people like me who have had this crappy thing for many years, the damage is already done, and it's too late.

 

Sorry if I sound so negative, but I cannot see anything that will reverse damage, but I have everything crossed that it will help some, and it gets funding.

 

Pam x

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Live for today.......never have regrets

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