hi all,
great encouraging news in the trial of ocrelizumab, at last there my be something to slow down ppms.
lets hope NICE except it and agree to fund it via NHS, and hope that my condition is not to advanced
at least we will feel like we are doing something to help our cause
have a great Christmas everyone and don’t over do it on the sherry
Great news, finally something for PPMS.
Happy 2017!
Gotta be hopeful!
pollx
Hi everybody,
great news about Ocrelizumab or it’s marketing name Ocrevus. Of course the big problem now is that NICE will take forever to decide and then look for anyway to restrict it’s use. Progressive have nothing yet whilst RRMSers have several drugs and no rationing, so I hope the MS Society will bring maximum pressure to bear and get this drug for all Progressives who are currently left to rot away with no hope. We’ve all paid into the NHS. I could talk about plenty of other issues where money appears to be no problem. What do you all think?
According to the Barts Blog we could be waiting for two years and even then we may not be eligible. I guess we need to start somewhere.
“In Europe the EMA will take up to 12 months and then NICE will have to look at its cos-effectiveness, which typically takes 6-12 months and then post-NICE there is a 3 month delay before NHS England allows us to use it. So in the UK anyone with PPMS hoping to be started on ocrelizumab may have to wait another 2 years, that is assuming is clears all the regulatory and access hurdles.”
http://multiple-sclerosis-research.blogspot.com/2016/06/newsspeak-ocrelizumab-applications.html
I will be very interested to see how it’s used in the US - when it finally gets FDA approval (now delayed to 28th March) and people start getting it on their medical insurance, will they only get it for up to a certain EDSS?
Jo x
My guess is in the USA if you got the money or the insurance then you get the treatment.
It’s clear there will be an NHS budget for this and NICE’s job is to invent criteria that will limit the number of prescriptions.
Sorry for being so negative, but MS is a horrible life destroying illness and now there is a drug but not the money.
Best hope for most PPMSers is if they can afford to go abroad.
If any medics out there disagree with my assessment please tell us all different.
Yours always disappointed,
Dave.
Hey guys
Life sucks and then we die. In this world nothing can be said to be certain, except death and taxes. Sorry but I also am feeling a bit negative. I have said for too many years the cure is out there, tantalisingly close. It’s feels as bad as telling a child Christmas is coming and you keep saying Christmas is soon. With PPMS it is always tomorrow if at all.
Sorry for the negative vibes but when family/friends hear and see the news a ‘cure for PPMS’ how many times do you have to say not yet. Merry Christmas guys we are a little closer M x
I read a Barts slog about this a few days ago, the Dr said he suspected it would be a narrow window it’d apply to.
Sonia x
Looks like it will be available in the US fairly soon, so we will be able to buy it privately. Does anyone have any idea of cost?
It will have to compete with existing DMDs.
Is it available on NHS yet?
Problem is PPMSers cost the NHS hardly anything at the moment, and my fear is the NHS will be really keen to keep the costs down when Ocrevus is eventually approved, so I predict the conditions for prescribing will be very tight. We are continually being told about all the great progress being made and drugs in the pipeline, but the awful truth is the NHS hasn’t got the new money to spend on patients who currently cost nothing.
Maybe ‘Treat me right’ should be replaced by ‘Don’t write me off’.
Dave99.
My thoughts on this are also very negative. We know that the FDA and EMA are considering the use of Ocrevus and NICE needs to approve it’s use for the NHS. According to Professor Giovannoni who says and I quote ’ Uk patients may be disappointed as it may be hard for the NHS to fund everyone getting a drug that is likely to be expensive. I would expect a narrow group of people to be eligible’, which to me means either 1, a postcode lottery, treatment depending on where you live. 2, a narrow group of people i.e people with primary and secondary ms. We’ve been the poor relations of the ms family for many years and deserve this treatment. 3, The NHS will not get funding so we will have to get a private prescription for the drug which most people will not be able to afford, for example the drug Sativex not approved by NHS England and costs more than £400 a month for a private prescription, i don’t think many of us could afford that and i hate to think how much Ocrevus would cost.
Ok, to sum up I think it will have a very restrictive use which will be very disappointing for many people, people who over the years have donated hundreds or even thousands of pounds to find a treatment or hopefully a cure only to find that if you don’t live in the right area, have medical insurance or are wealthy enough you don’t get the treatment. I for one will not be donating any more money if the people who get it are the ones who can afford it.
Regards Mike.
Ocrevus/ocrelizumab is all very well but I have PPMS and all I get is Gabapentine, I know there is not a magic pill, but does anyone take anything that helps even slightly?.
Ocrevus/ocrelizumab is all very well but I have PPMS and all I get is Gabapentine, I know there is not a magic pill, but does anyone take anything that helps even slightly?.
my consultant said they are doing a larger trial and he’l put me on it
Poll who says? If I wanna remain a miserable sceptical old git I will! 
Heee Heeee Heeee
Happy New year darling (said in my best Eyore miserable voice)
XXX Don
You and Dave99 are so right, and you’re talking about the article I read. It’s actually a sticky subject as I’ve herd a few people complaining there’s nothing for SPMS - it makes me want to scream!
All the treatments that are available and delay disability and make symptoms (relapses) less frequent for the RRMSers when the PPMers are getting by on a wing and a prayer, investing our own funds looking for scraps of hope to help with with a disease with no available meds.
Ultimately, we all have a progressive disease but our version starts to disable us from day one so it’s trult time we had some help - basically, we’d all like a cure!
Sonia x
There’s a few things some people find helpful but generally we have to self-fund it. Low Dose Nalrexone (LDN) is one thing and Biotin is another.
Ocrevus is being trialled for PPMS and no, it’s not a cure but may delay disability a little.
Sonia x
I hope things work out well for you joyj, but they have promised to put me on trials for the last ten years, but nothing yet. X