Hi, I’m really interested in being offered/trialled/prescribed & any other possibility to receive Ocrelizumbab.
However, I’m not sure of the facts, and accept I am ill informed about this apparent wonderful breakthrough for PPMS.
I understand it is the first proven treatment for PPMS, it is accepted by Europe, except the UK. The opportunity has been dismissed by UK’s NICE organisation. NICE are not allowing it to be prescribed to PPMS patients! There may be some opportunity of Ocrelizumbab for RRMS patients, even though there are already many DMDs for RRMS.
Personally I was diagnosed with M.S six & half years ago, aged 59. This was defined as PPMS nearly 3 years ago. Significant deterioration has occurred over the past 4 years.
Can anyone offer more information about how I could possibly apply to receive this treatment. A proven treatment of PPMS disease slowing, stopping, repairing PPMS damage? Or have we UK residents with PPMS been ruled out completely of any chance to receive the promising Ocrelizumbab treatment?
It is of course the only DMD that appears to have any benefit for people with PPMS, but I don’t think any existing damage would be repaired following treatment. The action of it appears to be solely about prevention of further progression.
There’s an article about this in the latest MS Matters (if you’re a member of the MS Society it will be with you soon) It suggests it’s as simple as asking your neurologist. I’m pretty sure I’d be wasting my breath to ask mine!
Cheers Sue x I’ll check that link out this week. I have MRI’s on Wednesday so if significant changes show, I’ll see my Neurologist. He happens to have an award for his Neuro MS work and research & may have advice on the new drug.
Ive joined an American fb page specifically for that drug well l think its that one l wanted to see how our USA buddies are responding to it. Only been a member about 3 days some say its helped others say no improvement l will keep you updated as to progress. Apparently it costs 36,000 per 6 monthly treatment?
I don’t think NICE has approved it yet - just the European lot. We’re still waiting for NICE approval. They’ve provisionally turned it down for RR and will report later in the year for PPMS and yes, it’s for early stages. My neuro has put my name on his list if it is approved.
Well who’d have thought it? From my first post in April 2018, it seems this month, Sept.2019, this drug Ocrelizumbab (Ocrevus) is available from NHS England if we with PPMS fit a specific criteria. Funding is available from NHS England and so doesn’t affect local council of authorities. Criteria is currently quite limited to those with a) a PPMS diagnosis under 15 years old. b) MS is active (shows changes in two MRIs between the current assessment & past 18 months). c) a PPMS patient can walk by hook or by crook) at least 20 metres. It’s looking promising in research, subject to results from the first people receiving Ocrevus, that the criteria will widen to cover more PPMS cases, plus SPMS and RRMS. I’m no expert but understand there is nothing to reverse any damage already done, it’s not promising to slow down or stop progression for everyone using the new drug .
But there is scientific evidence that less damage will be caused in most, not all, cases. It happens I fulfil the criteria subject to a new full assessment by a Neurologist. If that goes ok I will be offered the new drug of intravenous Ocrevus. The specialist will help me to choose whether to have the drug, and I have a choice to decline. All a matter of weighing up Risks v Rewards.
What do others think, feel free to correct any info I’ve misunderstood. Chrissie x
That’s great news, Chrissie if NHS England have finally agreed the terms. I too fit the criteria if my MRI shows progression. The consultant has my name on a list and said he would write when NHS conditions came through so I’m waiting with bated breath. I’ve researched it quite carefully and thought about it although I haven’t yet had the detailed discussion with the consultant. Hope you get it too if that’s what seems right for you.
Yes Moirah, NHS England are definitely providing funds but only for residents of England. It’s expected to lead to Wales & Scotland being able to fund it too.
It may be worth you phoning your MS Nurse or Neuro for an update and arrange an MRI so it’ll be ready by the time you have a new assessment.
NICE gave approval for Ocrevus a few months ago, then the prices were reduced sufficiently for NHS England to agree.
If I qualify for Ocrevus, I’ll have to decide if the evidence has proved trying the drug is worthwhile. Some of the side effects seem a bit scary to me.
Sat in front of my MS Consultant yesterday (annual appt) Ocrelizumab is not available yet in Scotland - SMC not yet approved should be in a few months!