Hi Everybody, hope you are all not too bad today.
Has anybody been contacted or talked with their medics about Ocrevus and Siponimod, the first ever DMTs for progressive?
I know the regulators are still considering these drugs but assuming they get approved they will help thousands of people that have up to now been left to rot by this terrible condition.
Thanks, Dave.
I will look forward with bated breath .
I have learnt to wait and see. Not to be negative, but I have never been one of these people to rush around looking for a cure. It is what it is.
But if it gives others hope then great.
Anne
x
Sounds interesting. Let’s hope it works!
Pat xx
Fingers crossed if it works, but for people like me, who a have had this yonks, I can’t think it will help. Sorry to sound negative.
Pam x
Ocrevus (ocrelizumab) has passed phase 3 trials and is being fast-tracked by the FDA (US authority), it’s supposed to be approved on 27th December this year - it then has to be approved by the EMA (European authority, but apparently they usually follow the FDA’s lead), then has to pass the NICE criteria. But it’s not a myth or a dream, it is a reality, and I discussed it with my MS nurse last month.
Perhaps you’ll believe the Barts blog: Multiple Sclerosis Research: ResearchSpeak: ECTRIMS highlight ocrelizumab NEDA data - or even this forum - https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ocrelizumab.
It’s not a cure, it slows or halts progression. And that’s good enough for me, that will give me some hope. Because, quite honestly, hope is the only thing that keeps me going most days, and it’s in pretty short supply. But NICE won’t approve it if we all seem to not be bothered, will they?
The other DMT is Siponimod, but that’s not as far along the approval path (https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/siponimod#avail).
I know these drugs are not without side effects and potentially very serious ones, I am very aware of that. But five and a half years ago I was on holiday in Lisbon like a “normal” person, and now I’m EDSS 6.5 - I spend a lot of my life watching my mobility, independence and dignity disappear down the toilet, and I’m asking myself, how much longer am I even going to have the limited mobility I have now and what price will I pay to retain what I have - and that is quite a high price, as I don’t relish the prospect of life in a wheelchair contemplating might-have-beens.
And I really sympathise where it’s come too late for people on this forum, I really do, I wish you could have it too, I wish it had been discovered/trialled years ago so none of us would be where we are now, but unfortunately it wasn’t.
If it turns out to have been a false hope - I think I’m paraphrasing Dr Jelinek - better false hope than no hope at all.
Jo x
It’s about time there was something for those who have ppms. Fingers crossed it helps people 
Grace xx
Hi JoH
Its not that I don’t believe it, and I truly hope it works as it will help many people, newly dx or when someone has not had it long, which will be fantastic and gives hope.
I have had this since the 80’s and I cannot see that it will be able to do anything, as the damage has already been done…but I would love to be proved wrong.
Lets hope that NICE will do the decent thing this time, and not what they have done with Sativex.
Pam x
I do agree with JoH…to be told “you’ll get worse there is nothing we can do for you” was my starting point with MS. I have to hold on to this hope that Ocrevus may stabilise deterioration. I am used to NICE not listening and have to pay for Fampyra from my own pocket …I’ll do the same for Ocrevus if need be …
Hi Pam,
It should halt anyone’s progression, no matter how long they’ve had PPMS, that’s what’s so exciting. I may have only had really noticeable symptoms for about 4 years, but I suspect I’ve had PPMS for over 20 (I limped for years for no discernable reason, have been numb from practically the waist down for over 13 years, and the knees down for longer than that, laughingly diagnosed as sciatica!)
So my damage is well and truly done as well, but I’m still hopeful I can get it (well, there’s no other alternative, is there?)
But I think it’s something they could and should offer to anyone - although you should be made aware of the risks - and then it’s up to you to make an informed decision - a bit like DMTs for RRMS (I presume, as I was never diagnosed with RRMS, so only going off what I read on this forum)
NICE aren’t that nice, are they? They always seem to be too keen on counting the costs and not keen enough on quantifying the benefits.
Jo x
I asked my neuro in August, he said let’s wait and see as he’s spoken too quickly before on things that looked like they were going to to happen quickly!
Fingers crossed we’ll hear more soon
Sonia xx