Last reply 2 months ago
Ocreluzimab (Ocrevus) – UK experiences

Hello,

Is there anyone on here that has started their treatment in the UK? I see that some Americans have. I am interested to know the approach taken by UK Neuros.

I haven’t got it yet but I am going to see a neuro later this month with a view to having it Rx for me. I dream of not being tied to as many pills (Dimethyl fumurate – Tecfidera).

Additionally, if your UK neuro decided to do it, why do you think she/he chose that for you? Did they or did you go in with an agenda? This was recommended to me by a neuro some 12 months ago before it was licensed so I am keen on that basis.

Thank you.

Best,

Dominic

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stumbler
2 months ago

@dominics , Ocrevus has only recently been approved for use in the UK. So experience will be in short supply.

I wouldn’t like to guess why Neuros recommend specific Disease Modifying Therapies (DMTs). We just have to trust that they’re working in our best interests.

But, if you can make a strong case for a DMT, then it may be considered.

The following comparison tool may help :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


dominics
2 months ago

@stumbler I am well aware that it is a neophyte in treatment terms. I do know that a few people on here are in the frame for it.

The centre I attend has completed all the necessary paperwoprk for a high-cost drug and there is a requirement that they need to be ready to go within (I think) 3 months, maybe 6.

I am already on a DMT, I have read the NICE Rx guidance and can argue the toss on Qualy data. I am interested in hearing from people why their neuro chose it or recommended it, in contrast to whether they approached the neuro asking for it specifically. I wonder what the ‘shape’ of those conversations has been.

I know that if I can’t get it local I can get it in London, it is just a complete fag having to drag myself into Town every 6 months. I try to avoid going there these days as I am no spring chicken. Been there: done that.

I have decided it is what I would like to take as I am just fighting to stay ahead of this wretched disease. In the last 25y I have had steroids, beta-interferon (Rebif), glatiramer acetate (Copaxone) and dimethyl fumurate (Tecfidera) as well as high dose cholecalciferol (vit-D) and modafinil (Provigil in the USA). The clock is ticking regarding the efficacy of treatments past 51y. Not too long for me until that milestone is passed and the more cautious neuros will not Rx it.

The side effects of dimethyl fumurate – whilst bearable – are v inconvenient. I do not want to sit with clients or colleagues whilst flushing and farting. I want to be able to contribute to the economy and society a little bit more. Having MS in the UK has enabled me to achieve one life goal, and that is to die in debt to the government. This is achieved through the cost of MS care and various surgeries (an active lifestyle in the past!) that have reassembled me.

My MS focus now is on getting Ocreluzimab. Forewarned is forearmed.


dominics
2 months ago

I did some digging about as I got myself wondering about 3 or 6 mo9nths.

It is 3 months: https://www.nice.org.uk/guidance/ta533/chapter/4-Implementation

This is the a key page to digest and internalise. It helps to know at least as much as the meduic! https://www.nice.org.uk/guidance/ta533/chapter/3-Committee-discussion#waning-of-treatment-efficacy It is getting printed and put in my briefcase just in case!

NICE do not foresee it having an adverse financial impact: https://www.nice.org.uk/guidance/ta533/resources/resource-impact-statement-4907983069

If you are having problems sleeping the read these: https://www.nice.org.uk/guidance/ta533/evidence/committee-papers-pdf-4909622509

Presently m=the costs opf my treatment are nopt on the NHS books as I am on a trial (the drug company covers all visits, dignostics and cost of the drug) so moneywise I am a new patient so the cost of the drug (all redacted here as Roche did a deal) and the Quality Adjusted Life Years ought to be poiwerful arguments to make. Still, I want to be forearmed for this convo.


laurasavage567
2 months ago

Hi there,

This treatment has been mentioned to me actually, I had my first Lemtrada treatment in July this year – due to health problems after this – both my neuro and MS nurse think the treatment hasn’t worked. I’m actually having another MRI tomorrow and a lumber puntcher soon because they’re concerned that I’ve had new disease activity.

Anyway, my last appointment with my neuro they mentioned ocrelizumab or cladribine.

I’ve heard of neither as I’m aware they’re both new treatments, a decision will be made after my MRI and lumber puntcher I guess, I’m quite sceptical though as it seems despite my est efforts my MS is a feisty old bast*ard 🙂

good luck with everything and take care, Laura x


dominics
2 months ago

Dear Laura,

Ocreluzimab has an excellent safety and tolerability profile, according to the data. Don’t be sceptical, things are steadily advancing. I suggest that if your neuro is offering you ocreluzimab it means they are pretty up with things. I’d snap their hand off.

When I was initially diagnosed, in the UK, they were v v cautious. In the US they were already intervening early with the interferons. It seems now that early intervention with DMTs has a better long term effect on the outcomes.

Lumbar punctures suck. I only ever had one that I can recall and 2 days later I was driving for work and had to pull over for several hours as the blinding headaches were awful. Back in the day it seemed more normal to ‘overlook’ telling the patient things like this. When I was diagnosed I was obviously surprised. I asked the neuro for advice/help/support etc. All he could manage was, ‘eat less red meat’. That. Was. It.

Years later I met my MS Nurse in a clinic when I moved to Oxford. She remains my MS Nurse and is fantastically helpful and supportive.

Stay strong, it sounds like you are in good hands. Strange shit may happen from time to time so try and be chilled as it will pass. Illegitimi non carborundum, as they say 😉

Best,

Dom

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