Unable to get DMT I'd like - is there anything I can do?

Symptoms and treatments
1

Hi everyone - first time caller, long time listener. Hope everyone is having a good day! :heart: I’ll get straight to the point and then provide the background info after just in-case further context helps.

It would seem to me - thanks to the MS Society and a few other sources - that the most potentially effective treatment option I could have is Briumvi (ublituximab), and that it is around 55% more effective at preventing relapses than teriflunomide in studies.

However, I’ve been told by an MS nurse at the specialist NHS centre where I will be treated that their pharmacy doesn’t have Briumvi “for some reason”, although it has been approved by the NHS for almost a year.

Is there anything I can do about this other than going private, or am I just stuck taking a treatment that studies indicate is less effective? (I’m unsure if other hospitals’ pharmacies may have it, and how to find out.)

Here’s my situation in more detail:

I’m a 40-year-old man in the UK, recently diagnosed with MS, and finding it really scary at the moment (I’m trying to figure out if my current symptoms mean I’m more, or less, likely to be in a worse place in 10+ years’ time, but that’s another story).

After finding myself inexplicably falling over on walks in January 2024 (with my left leg just suddenly giving way from under me), and my doctor telling me it was because I needed to go to the gym for six months (:roll_eyes:), I was diagnosed with myelitis in June 2024 after paying for an MRI privately and a lesion on my lower spine was discovered.

I was given methylprednisolone via IV and was told that would sort me out, and things did improve, but I was back in trouble in January 2025 (with additional symptoms such as vertigo and trouble urinating).

This time I was given methylprednisolone in tablet form, and it crashed my heart rate and sent me absolutely doolally (I’d never had brain fog before, but here I was lying in bed with a heart rate in the 40s-50s and unable to follow what people were saying to me) - so I was tapered off it within two weeks.

An MRI in May 2025 showed I have another lesion on my spine (this time just below the neck) - though it took until September 2025 for an appointment to be told this - and I was told by my neurologist that I have MS, and need a DMT. (Though I wasn’t even told what type of MS I have!)

I’m now waiting on a consultation which isn’t happening until next month, and treatment won’t start until the month after that…

My current symptoms aren’t life-changing, and I feel quite lucky as things stand - I can walk (even jog if I’m careful). I have tingling in the lower legs and feet, two completely numb fingers on my right hand, mild vertigo and brainfog, headaches every single day (which is a new symptom) and I have to strain to go to the toilet which can take a very long time.

But the headaches, vertigo and struggling for words sometimes is worrying me a lot, especially as the May 2025 MRI didn’t show any brain lesions. I’m scared that the next one will. :frowning:

Thanks for any help you can offer! :heart:

2

Hallo

Is Briumvi a bit like Ocrevus? Might it be worth asking for that? I would think paying privately would cost a lot of money.

Maybe put something in writing to the consultant if you’re not getting anywhere with the MS team.

Good Luck with it all

3

DMTs are very complex drugs and with the fast number of options available it is understandable that each hospital is not geared up to provide the full spectrum. For each drug a protocol needs to be worked out for administration and safety. The options available to you will depend on the type of MS you are diagnosed with and more subtle variation. It would be nice if selection could be tailored to measurable characteristics but I think this goes down to consultants experience/prejudice.

We can lobby for a DMT that is determined appropriate by the Multiple Disciplinary Team and is good practice to be offered a choice.

Each centre will have its favourites and the advantage to us is they will be me more aware of side effects and interactions with other medication.

I did successfully campaign for a more effective second treatment but was surprised by the recommendation of one that I had not thought of.

4

Hi there, a quick short reply. I’m slightly puzzled at the explanation that the hospital pharmacy doesn’t keep stocks? I ve been on Avonex for some 19 years or so (a much less effective treatment than Briumvi) but the pre-filled syringes don’t come from the hospital. I guess it’s different with infusions I.e done by drip at the hospital but I’m wondering why they or the health trust can’t just order supplies. Anyway as I understand it Briumvi is one of several monoclonal antibody treatments ( of similar effectiveness to Briumvi so the hospital might offer you another one. Also, as I understand it the usual arrangement is that at your first post diagnosis meeting with the neurologist you will be offered a range of suitable treatments to consider and choose from.

( from what I know it would cost you £ tens of thousand a year to do it privately and I’m not quite sure how it would work in terms of getting a private hospital to take on the care of you/your MS)

5

From NICE guidelines (the rules that cover medical treatment in the U.K.)

Use the least expensive option of the available treatments (including ublituximab, ocrelizumab and ofatumumab). Take account of administration costs, dosages, price per dose and commercial arrangements. If the least expensive option is unsuitable, people with the condition and their healthcare professional should discuss the advantages and disadvantages of other treatments.

Hope this helps!

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6

Hi,

I can understand your desire to be on a high efficacy DMT and would also push for it. Make your case locally as hard as you can and if that doesn’t work, ask your GP to transfer you to a different trust.

But is there any reason why you would want ublituximab specifically? The other anti-CD20s are probably very similar, same mechanism. I’d ask about ofatumumab or ocrelizumab, which have been around for longer. Or natalizumab, or cladribine - basically any high efficacy option.

The algorithm in use for DMTs seems to be a bit outdated I think and people interpret it their own way. Make sure to document all signs that your MS is “active”, especially anything that might count as a relapse - that would up your chances.

From diagnosis to starting treatments took me about 9 months - and that was after a couple of years getting to diagnosis. Your delay, while unfortunate, is not surprising…On going private, you would not get an immediate consultation that way either. You need to be on the NHS to start a DMT and the relevant safety monitoring - never heard of anyone doing that privately, you’d have to be very wealthy!

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