Put the above (Ocrevus (ocrelizumab)’ in the MS Trust and up comes information, put it in here (MS Society) and ‘it’s not found check the spelling’!! I have just added it to the Society dictionary, am I going mad? Be kind in your reply if I am going mad.
News today anyone … I’m 16 hours out of date but I thought someone else would be talking about it. I recommend BBC health today and MS. M x
I posted under Good News
…except it seems to have disappeared!!
I just gave the news that Ocrevus has now been licenced by NICE for PPMS If you have EDSS less than 6.5, have been diagnosed no more than 15 years ago, you live in England and your MS is active. It’s going to take the NHS 3 months to get organised for it.
Seems good news - at least for some of us!
You are a gem got my emoji back, hope is out there!
I must admit to being a bit down today, will probably not even given the chance! M x
I think from what I read, you need to have active lesions… I don’t. Sonia x
Not being prescribed to people with a history of cancer. That’s me ruled out.
Not one part of me is active so am I ruled out? Don
So i went for an MRI scan if if it comes back i have no active lesions…which it did before but i no my MS is getting worse whats the point of going for an MRI scan …the NHS has set the bar so high on this one…
Hey folks, this OCREVUS is the very first glimmer of light. A lot depends on the results of Ocrevus on those who actually fit the stringent criteria to begin the transfusions. The current side effects appear to be more promising than the ‘nothing’ for PPMS up to now. Nevertheless, the side effects are a lot to be considered. Personally, my MS Nurse has begun the process to recommend me, PPMS confirmed in 2011/13 to my nhs Neurologist. Apparently, he has an associate who literally specialises in PPMS only (female). So far I fit the timescale & walking distances, so an MRI to show if active and a new, full & exhaustive assessment by the Neuro PPMS Specialist, will eventually reveal if I am a suitable canditate. Maybe a total of 3-6 months from now to actually starting Ocrevus. From how I understand it, the funding doesn’t depend on post codes etc, it is provided by NHS England to those of us living in England, it’s cost to NHS England is a whopping £20k. per person, each year. From statistics,research shows less risk to patients by slowing or even stopping the continual damage only in 55% of cases. I have reservations as some of the side effects actually cause cancer (hence the risk to any earlier Cancer patients). Plus other risks. I can understand NHS being cautious of such high costs, with little real evidence of total success. Roche, the manufacturers have cut their costs to encourage NHS to buy it. This very first step may lead to more and eventually something will be available to all PPMS, secondary progressive SPMS, all RRMS and all inbetween. We Patients, in all MS categories, total a tiny amount of people out of a 66Million population. So NHS understandably spends more on guaranteed cures for other conditions, such as cancer, heart failure, all critical etc. The Ocrevus is the first Hope we’ve ever had, it’s a good start. Personally, a lot more evidence of success is needed before I’m convinced it will stop any more damage. The damage we already have will always be incurable brain disease.
Hi everyone. I’m first time poster on here. I was diagnosed with PPMS in April 2016; but probably had it for a period of time before diagnosis. I’ve recently been referred by my MS Nurse Specialist to Consultant Neurologist to see if I satisfy the required eligibility for ocrelizamub. Sadly I came away feeling it was a waste of time because the consultant I saw; spent most of the meeting looking at MRI scans from 2015. She also implied my PPMS needed to be more active?? She then suggested that because I have congenital hydrocephalus; it is difficult to diagnose PPMS; despite the fact I had lots of investigative procedures back in 2014/15 including the dreaded lumber puncture. The hydrocephalus was discounted as a red herring by my main consultant who provided my diagnosis. I have all the usual symptoms of PPMS yet end up suggesting that perhaps a further MRI scan would be a good starting point to establish how things have progressed. She seemed to agree this was the best course but we’ll see…! I realise ocrelizamub is expensive and there will be selection criteria but I wondered what experience others have had??
Hi Mike, my experience:- wrongly diagnosed with Fibromyalgia in 2004, age 52.
MRI’s in 2005 showed many inflammation areas. Memory, concentration and attention were poor. Saw a Neuro psychiatrist who seemed very vague & asked me what 3 items were… A phone, a pen, a ruler. Then asked me to copy draw a shape, I asked “You want me to draw an Octagon?”
I became angry he seemed to think I had dementia of some sort. I then copied the Octagon, plus I drew & named a square, circle, rectangle, triangle and an isosceles triangle. I recited maths eqations, incl %, fractions, long division. He saw me 6 months later & asked the same questions! Horrified at his lack of listening & observing, I suggested he reads my file and reactions. Oddly, my file got lost for 6 years.
Eventually, in 2011 MS was confirmed and my driving licence revoked immediately. Two years later PPMS was confirmed. Since then I am physically unsteady, fall down a few times every day and know my vision is deteriorating.
I saw a new MS Nurse last August. She suggested Ocrevus and arranged more MRI’s for November, then a full assessment by a new Neuro.Consultant. I have researched the brand new drug and the side effects actually affect over 45% of patients. A little high, so need to weigh up risk v reward.
Today, I’ve received a letter from a Senior M.S.Nurse specialist and despite my own observations of further damage and more obvious symptoms, the MRI has confirmed no new lesions or activity is shown. Hence, I cannot meet the stringent criteria.
Naturally, it’s great news if no more damage or progress has been made since 2018. Though, in view of a multitude of errors and omissions in the past, I will be questioning my MS Nurse at my next appt.
For yourself, I think it’d be worthwhile to get back to the original MS Nurse specialist who referred you to be assessed by a Neuro Consultant for Ocrevus. Also, did you have MRI’s after your MS Nurse Specialist but before you saw the Consultant Neurologist? They would provide evidence of any changes from the MRI’s you had in 2014/15/16.
Good luck my friend, personally, although the future looks bleak, I believe the % of side effects is a tad too risky.
Chrissie x
Not sure whether I got good news or bad news today! The letter from my consultant says that my recent MRI “does not show any evidence of increase lesion load compared to the one done in 2017.” It goes on to say that I’m therefore not eligible for Ocrevus. I suppose it’s good news if there have been no new lesions in the last three and half years. I was only diagnosed in October 2017 (when I was 66) and really don’t think I’d had symptoms before 2014 and those were relatively mild. My walking is definitely compromised and I do get more tired than I used to BUT I know I’m pretty lucky. I’ve also got a neurologist who treats me like an educated adult and an MS nurse who is very nice and who I see annually but she did get back to me on the one occasion when I had a question. Definitely good news!
Hi Chrissie. Thanks for your comments. I’ve had time to reflect and read other comments since my debut post! I’m more of the opinion that it’s good news if my PPMS hasn’t progressed since 2015. I expect my MS Nurse will have been updated by now and if I do get another MRI scan that’ll at least confirm where things stand for now. I’ve had no scan since diagnosis which showed lesions on the R side of brain and spinal chord. I didn’t get as far as you did with discussing the benefits and side effects of ocrivus; and by the sounds of what you’ve said; it’s something to think about before committing… I feel extremely fortunate that whilst I have fatigue, balance and weakness affecting my left side; as well as memory and concentration issues: that I can and do participate in activity to keep the body and mind going. I wish you and others well with your own journey’s with this condition. Mike x