Last reply 1 week ago
Victory!! Ocrevus approved for PPMS

Hopefully you will wake up to the news that Ocrevus has now been approved for PPMS in the U.K.!!!! After all the campaigning, over 20,000 signatures, NICE has yielded to public demand. We know that this isn’t going to be suitable for all PPMS folk, and that criteria will need to be met but it’s a huge leap forward, the first of many for all of us. Me (RRMS) and my sister (PPMS) are hopefully going to be interviewed for the Ch 5 news today, as we joined the MS Society campaign as sisters because one of us was eligible to access Ocrevus and one wasn’t, so they wanted to use it as an example. Love and strength to you all you MS Warriors, and keep up the fight x

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highlander
1 week ago

@vixen
That’s fantastic news!
👏👏👏😆👏👏👏
I’ll be watching for you!


vixen
1 week ago

stumbler
1 week ago

Great news, @vixen . Well done for your part in the victory.
 
Nice picture. 😍


dominics
1 week ago

@vixen Ha.

I am slow to the party. I posted similar, scrolled down to see you were way ahead of me!

Great news regardless. It may stop @highlander from breaking the forum like he did yesterday.

*We know it was you. @stumbler told you not to touch that button Could you resist? *


vixen
1 week ago

@dominics, I stayed up until after midnight to post the story as it was under press embargo until 12.01. Good news all round, hey?


dominics
1 week ago

Blodd6 brilliant news. Well done.

I was asleep by 2230h. Am fighting off the slip of the pen that marks me as PPMS from RRMS.

Am already on Oc. At least, when that happens, I won’t have treatment stopped on a silly technicality.

Same for many others I suspect. Anecdotal evidence that several neuro were classing the borderlines as RRMS in order to Rx Oc. At least that can stop now.


grahamjk
1 week ago

I received an email from my local ms group coordinator Howard bond this morning, it’s fantastic news. I was about to share it but you beat me to it.


dominics
1 week ago

edmontonalberta
1 week ago

@vixen

Congrats; very happy for you!

Good BBC story – nice to see you get your 10 minutes of fame… 😉


watsoncraig
1 week ago

Get it approved up in Jockland now!!!


wjgregg
1 week ago

Dear @vixen,

I’m very happy for your sister, and all P.P.M.S. sufferers. I’m glad to have signed. Great article on the B.B.C. website. Keep spreading the news!

All the best,

Jon


peterfrancis
1 week ago

@vixen

Great news, something positive for once.


d1zzy
1 week ago

@vixen I got a diagnosis of PPMS at 1200 today, and my neuro told me that as of this morning, I might be able to access some treatment. I’m still taking all this in, but can’t thank you enough for campaigning and making this possible. Shift has been a massive help to me along this road, and it’s amazing to come home from the hospital to know that all of this support and information is available here. Not feeling great, but a damn sight better than I might have been! I hope this helps your sister. Thank you
D1zzy x


vixen
1 week ago

Hello @dizzy, wow, what a groundbreaking day to be diagnosed with PPMS. There were so many campaigning, so many lobbying their MPs, supporting, spreading the word. It truly is a big step forward. And, my lovely, there is lots of stuff coming up in the pipeline by way of treatment. We are not expecting a cure any time soon. But we are expecting. So, it’s a big diagnosis, but oh my word, how the landscape has changed in the last 10 or 15 years. Stay strong. Me and my sister are mortified at having watched ourselves on TV tonight. But it’s all about the bigger picture, supporting each other, and making our voices loud and clear. X

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