Does anyone know if Ocrelizumab is available through any private hospital? If so would you know where and what one would imagine the cost to be?
I am aware that NICE have approved it for the NHS but I suspect that the criteria set for its use will mean very few will meet it, after all that will be in their interest as estimated cost of treatment is £19k a year. There will be many denied the treatment that would probably make their lives better.
I dont know if I would be in a position to afford it should it be available but I will move heaven and earth to raise the money even if I have to get into big debt because at present I am existing not living and this will only get worse.
Have you spoken to your Neuro? They’ll be able to tell you whether or not you’d be eligible, and if you are, put you on their waiting list; that’s what mine has done. They may also tell you of anywhere you can try privately in your area.
OCREVUS. Hi its about 24k for the first year and then 12k for each year following.Ive asked. Why are thinking about it ? I am but this is because the NICE caveats appear to be counter intuitive in that you have to have more lesions that are active which create greater debilitation but to get it your EDSS score has to be 6.6 or less? However, if you don’t have active lesions you can’t get it on the NHS!! Seems remarkably Catch 22 to me!!!
COuld anyone who Has PPMS please reply if they are receiving OCREVUS on the NHS as if as stated above doctors apply the caveats laid out by NICE then no-one with PPMS can fulfill them therfore I would assume that no-one is getting it. Thank you from the forgotten 5%!!!
Not quite sure that I’m answering your question but I’ve got PPMS, my EDSS score is well under 6.6, probably 3.5, and my consultant has me on his list for Ocrevus. He’s said I’ll need a new MRI but he’s waiting till he has the clear requirements from NHS England about whether the MRI needs to be done with contrast.
It may be slightly different being on the RR/SP/PR continuum, but I’m possibly being offered it and I’m 7 on the EDSS with a current diagnosis of Progressive Relapsing. I had a discussion with my neurologist just last week about my latest relapses, my EDSS level and Ocrevus. I’m having a brain & whole spine MRI on Friday to see what the current picture is. I’ve said there would have to be some very compelling evidence of activity on MRI for me to take the risk of the drug.
I’m very nervous of increasing disability progression so am fairly confident that I’ll not be taking the drug. An increase from my present level of disability would be pretty rough. I can live with fairly gentle progression, and hopefully small relapses. But there’s too great a chance of rapid increases to disability to risk it.
Are you worried about PML? I can’t find any other evidence of Ocrevus increasing disability. Have I missed something? I think the criteria for getting Ocrevus for PPMS is different to that for the other types of MS
I think there are multiple places where users have suggested that Ocrevus has impacted their mobility. Some are US sites, some U.K. but I don’t want to wind people up by pointing at certain sites. One of my neighbours the other day equated drug reports to online book reports - people tend to highlight their bad experience, but not their good. I’m not sure I agree when it comes to drugs. But, regardless, I have read quite a few negative ‘reviews’ of Ocrevus.
Personally PML doesn’t worry me. I was tested for JCV a few years ago (6 - before I started Tysabri which gave me elevated liver enzymes) and I was negative for the JCV then, I know I may have encountered it since, but it’s unlikely.
I think as time goes by, I’m less and less inclined to risk my remaining mobility to Ocrevus. I’ve had bad responses to 4 different DMDs so far, I don’t really want to add to that number.
Hi everyone. I had my Ocrelizumab infusion, first one, 11th Sept 2019. Next one due 11th March 2020. Im starting to experience the beneficial effects are wearing off. Has anyone else experience this? Ive got about 6 weeks to wait for the next shot. Any info would be greatly appreciated. BTW for me this drug has been a game changer. Up to this last week or so I have felt like myself again after years of struggling. Its been fantastic. Hear from you.
Hi all, I found some Ocrevus info and other up to date stuff. Quite interesting reading:-
I don’t know if you can link the above, I opened a new tab and copy typed all words & hyphens.
Judy01, Hi there, I’m pleased to read of the success you found from Ocrevus (albeit not working for the expected 6 months). Have you spoken to your Neuro or MS nurse or Neuro Consultant?
I thought this drug was being closely monitored so that blips & slips can be recorded and action taken. Were you just left to wait for 6 months after your first infusion? No advice, contact numbers etc. This, to me, doesn’t sound at all like close monitoring! Quite worrying.
Hi Ssue x, I too have begun the Ocrevus procedure. My MS nurse suggested I meet the criteria. I can walk 20mtrs & in November the MRIs of spine & brain, were done. Then finished with the contrast dye. Next month I have an appt with MS nurse and hopefully, a lady Neuro who specialises in Ocrevous and ppms.
Considering this Ocrevus is called Fast Track, it seems quite a slow process from my MS Nurse appt last September to being told if I quality and then take my time to weigh up potential slowing to stopping the progression, and then to assess the risks versus reward.