Forum

ocrelizumab

Drug Dramatically Cuts Progress Of MS: Trial

Thomas Moore, Health Correspondent

Doctors have unveiled “game-changing” results that show for the first time that a drug can significantly slow the worsening of multiple sclerosis.

Three major studies of the drug ocrelizumab show that it reduces the number of relapses, and delays disability caused by the neurological disease.

Around 100,000 people in the UK have MS, which affects nerves in the brain and spinal cord, causing problems with muscle movement, balance and vision.

Existing treatments only have a limited effect on the progress of the disease.

But ocrelizumab was found to have a dramatic effect on both the relapsing-remitting and primary progressive forms of the disease.

It is the first time a drug has been shown to have a positive effect in a large clinical trial of primary progressive MS, which affects between 10-15% of MS patients.

Dr Klaus Schmierer, a consultant neurologist at The Royal London Hospital, said: "People with primary progressive MS and clinicians alike have been eagerly waiting for an effective treatment to slow the path of relentless deterioration.

“This is great news for everybody affected by MS, and society as a whole.”

Ocrelizumab selectively targets B-cells, one of two forms of immune cells that are thought to cause degeneration of nerve cells, resulting in symptoms.

Results presented to the European Committee for Treatment Research in Multiple Sclerosis show the drug reduced the rate of clinical disability in primary progressive MS by 24%.

And in the relapsing-remitting form of the disease, it halved the frequency of relapses and was more effective at delaying the onset of disability than interferon, one of the main drugs currently used for MS.

The manufacturers, Roche, are now expected to apply for a medicines licence from the regulatory authorities.

The watchdog, the National Institute for Health and Care Excellence (NICE), will then assess whether it is cost effective for use on the NHS.

Professor Gavin Giovannoni, of Barts and The London School of Medicine, said: "The results are a game changer for the clinical community.

“The important next step is for regulators to enable … treatment to be provided as soon after diagnosis as possible to provide optimal outcomes, with the potential to improve patients’ quality of life in the long-term.”

Former British jazz pianist of the year Craig Milverton has been taking the drug since 2012.

He has primary progressive MS and with his fingers beginning to go numb and his condition worsening by the month he feared he may have to stop playing.

But from the very first infusion he noticed the difference

“It seems to have kept me stable,” he told Sky News.

"I did not notice anything getting any worse.

"I can happily say now that I have not deteriorated since I started taking the drug.

“So it has been amazing for me because I really thought my career was over.”

The MS Society’s Executive Director for Policy and Research Nick Rijke said the results were a “big moment” in the search for an effective treatment.

“These phase three trial results will provide a great deal of hope for people with primary progressive MS, who currently don’t have any treatments available that can slow down the worsening of their condition,” he said.

"So far only the top line results from this trial have been announced, so we look forward to seeing the full details with great anticipation.

“We hope such an encouraging outcome will stimulate further progress in beating this disease.”

1 Like

Lots of articles in various papers today regarding this drug…sadly if it passes its final trial it still won’t be available until 2017!

Nina

1 Like

I read some coverage in The Times this morning and was very excited by it. It seems like the first real breakthrough for PPMS. I know it’s early days, but it will give a lot of us hope. Ironic that it is announced in I the day the NHS is described as being so much in debt that it cannot continue in its present form…so we’d better start saving up in case the drug becomes available but only selectively, because of the cost!

1 Like

I might have PPMS - jury still out on that.

The drug only stops deterioration which is why a person with PPMS cant wait. I would not mind waiting if the drug could reverse the damage that is done. It is harder now to accept deterioration when there is a drug out there that could stop it and some lucky folk in the trial have got their hands on it.

For us it is a life raft in the distance that we just cant reach. Slightly better than before I suppose when there was no life raft at all.

Sorry for the rant - my leg today is so heavy. Spasticity in calf is dreadful even the FES cant pick my foot up today that well. Been trying on shoes and cant walk well in anything. Shopping with my Mum who is 80 and she was holding me up ! Still think I need a stick but the neuro physio wants me to do more exercises and thinks I dont need a stick.

Moyna x

1 Like

More details revealed today by Barts & London Blog.

3 Likes

And from the BBC:

http://www.bbc.co.uk/news/health-34475629?post_id=10206851746837624_10207993724346348#=

This is looking very good indeed.

Pat xx

1 Like

These comments were on the Barts Blog this morning.

http://multiple-sclerosis-research.blogspot.com/2015/10/clinicspeak-highlights-and-hot-topics.html

Ocrelizumab in relapsing MS results; very good efficacy with a very favourable safety profile. Ocrelizumab will allow us to flip the pyramid and use highly effective treatments very early in the disease in the majority of MSers. However, my initial enthusiasm for ocrelizumab has been dampened by Steve Hauser’s comments that a large number of their patients with relapsing MS who have been treated for 10+ years on rituximab have now developed SPMS. If this is correct then anti-CD20 B-cell depletion will not be a panacea. Clearly we need to do similar deep phenotyping studies in ocrelizumab-treated MSers and we need to see what happens to brain atrophy rates over the long-term.

Ocrelizumab in PPMS results; although these were positive we will need to wait to see if the results are being driven by a subgroup of PPMSers with inflammatory activity. I would be surprised if the regulatory authorities license ocrelizumab with a wide indication for PPMS; I suspect they will push for a more restrictive license based on subgroup analyses. This study also suggests we need to focus our attention of the B-cell as being the main driver of MS disease activity.

2 Likes

Whenever there’s a glimmer of hope its quickly taken away by the HOWEVER bit…

J x

1 Like

Just to let you know - there’s a (closed) Facebook group been set up for Ocrelizumab, not a lot of members so far - but may make for interesting reading as people start taking the drug.

Jo x

2 Likes

Thanks Jo… after reading Whammel’s info I think I’ll wait a while. I hate getting all excited only to be let down (again!!!).

All we can do is wait and see. You need the patience of a saint to have MS… in so many ways!

Pat xx

It seems you have to take it as soon as you can after diagnosis, but as we all know, diagnosis can take years - the symptoms tally with PPMS when the clinical tests don’t…by which time,mit might be too late for any real benefit. Am not holding my breath - more concerned at the moment by the fact that my three month old scooter suddenly died on me in town yesterday, leaving me stranded. Makes you so angry as it just rubs your nose in the fact of your own dependency. Will be on the phone to our local mobility centre at 8 am sharp tomorrow!

1 Like

Oh Lynda that happened to me once and it was the first time that I really realised I was disabled. Completely at the mercy of strangers. It knocked my confidence as well… so as they say about falling off a horse… get right back out there on the scooter asap!

Hope they will replace it for you. The place I got mine from took mine away and loaned me one until they’d fixed it. A tiny stone had lodged itself under the battery so that the contact was broken! They said it was a one in a million chance. That must be about 3 years ago or more and it’s never happened again.

Pat xx

Thanks, Pat. Always relieved when somebody has had the same experience. Phoned at 8 - great dismay, shouldn’t happen, etc - husband took it straight round and it was fixed and home again by 11. A fuse connection in the battery had become slightly loose. So all well, which is a relief, as we have son, wife and two grandchildren under 3 visiting from Australia for three weeks! Grannie’s scooter is a big hit!

1 Like

Great news about Ocrelizumab. I am a bit worried NICE will just look for any excuse not to approve this. Hopefully Roche will make it affordable, not much point developing drugs nobody can afford.

Dave.

2 Likes

All very well it saying it slows the progression of the disease, trouble is the speed of the the rate of progression varies greatly !! So how is it possible to know that ?? And given they say it helps for 24% of people. It seems to me just another, throw some numbers up in the air and hope they’re believed.

I have had ppms for 11 years and seen various different neurologists including one leading one at Addenbrookes and have never been offered the chance to participate in any trial , not even been offered !!! So where are they getting all these people from for this trial, for that trial ???!!!

Sorry but to me it just looks like more snake oil, and the clinching line for me was them saying it will not reverse or repair the disease, thus leaving the benefits as grey as possible… Again… Kerching !!!

1 Like

One other observation, why all the stupid names for these drugs ??Do they think if they give it a weird name people will think its sophisticated or something !!

1 Like

I’ve now been taking Biotin 3x100mg and thiamin 500mg for four months now Bladder may be functioning slightly better.

Has anyone felt any real benefit ?

John

Hi John,

I started on June 24th…my bladder has shown no improvement but my walking has improved…unfortunately my strength hasn’t so although my walking has improved I still can only take a few steps!

One thing that has improved tremendously is restless leg syndrome…I’ve had it almost daily for forty odd years to the point I could happily take an axe to my legs some nights and now I rarely get it…huge relief and for me at a hundred odd pounds a year it’s worth it just for the RLS.

Having said that, I am hoping for some energy sometime soon!

Nina

PS I have not started thiamine as yet.

Hi,I’m SPMS and have been on a trial for Tysabri and SPMS for nearly three years but the drug company Biogen Idec have stopped the trial because it wasn’t working so to have something like this on the horizon at least gives me a bit of hope for the future.To be honest I’m glad the trial has stopped because friends and family have said I’ve never looked as bad when I’ve been on it and now there’s ony the MS to blame and not the Tysabri side effects.

1 Like

Hi all,

Thought you might like to see this video re ocrelizumab: - YouTube - there are a few more short videos that might be of interest on the same “page” about ocrelizumab for PPMS.

Let’s hope our neuros are watching this!

Jo x