DMT wishlist

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Barts-MS rose-tinted-odometer: ★★★★★ (seeing green; the green shoots of spring)

I was asked yesterday if I could have a wish and change three things in relation to the prescribing of MS DMTs in the NHS, which ones would I prioritise? Can you help? The idea is to make changes based on how we would want to manage MS proactively as possible and to give pwMS choice. The idea of this exercise is to get an idea of what is most important to the MS community given our current restrictions. Please note you can add your own priority at the bottom of the survey if you don’t feel satisfied with the limited selection provided. 

The poll will take 3 seconds to complete and you are welcome to complete it if you live outside of the UK and/or are not someone with MS. 

Thanks

Conflicts of Interest

Preventive Neurology

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

16 comments

  • Faster access to a fast acting DMTs as soon as diagnosed. Then decide on long term treatment options.

    And obviously the IRTs as a first line treatment if people are happy to go on them.

  • Its so simple remove the treatment restrictions and leave the decisions upto the neurologist and patient the way it should be ! Stop making it about money and cost, this should habve nothing to do with someones health and future disability.

    • Unfortunately it is frequently the neurologists that are the problem here (you know who you are) where their widely recognised aversion to risk can appear to tip over into treatment nihilism.

      • Sorry i have to disagree, the patient can well be the problem. Alot of pwms like to bury their head in the sand and blindly follow their neuros and thats on them. If your willing/ responsible enough and self advocate you wil find yourself with a neuro, just as annoyed as you are that they cannot prescribe hsct or alumtuzumab.

        • Not really much to disagree with there. Yes, sometimes some pwMS can be the problem but resistance in the MS neurology community is a very real problem and not all pwMS are as genned up as others.

      • Back in 2014 my ‘just a neurologist’ wanted to skip 1st line treatment (rebif/Copaxone) and put me on 2nd line Natalizumab. This was because when I first came in for MS, I was. in hindside, already sick for years and already disabled.

        A Prof of another hospital kicked him in the nuts and told him that he must put me on 1st line dmt and he was a Prof and who do you think you are? Just a Neurologist!

        Can you imagine how the prof’s reaction was when I suggested 3th line Lemtrada to start with as first dmt?

        So I started rebif. Got worse. Started Teri. Got worse.

        2016 ended up in an ms nursery home in a wheelchair with diapers on.

        2017 finally got Natalizumab. Since that moment I even got a little better.

        2019 had to stop due to pml antibodies.

        No rebound because went on Ocrelizumab and I’m still doing pretty OK.

        Moral of the story
        (You know who you are. W.nk.r)

        Excuse my French

  • Add Alemtuzumab (and Stem cell treatments) as 1st line DMT’s so you get the MS ‘cure’ you were referring to yesterday. I know it’s an expensive Day 1 cost, but it would remove the otherwise, ineveitable future downstream costs that would become ncessary from ‘just putting a sticking plaster’ on the MS symptoms at 1st presentation. Hit the bastard hard at 1st presentation!

    • “Add Alemtuzumab (and Stem cell treatments) as 1st line DMT’s so you get the MS ‘cure’ you were referring to yesterday.”

      Unfortunate that Alemtuz and hsct don’t get rid of EBV..and so with increasing age people relapse even after 10 years remission…percentage in hsct is pretty much 30%…Alemtuz
      percentage should be higher than that but what it is exactly I don’t know.

      “..T cell exhaustion, which occurs in virus-specific CD8 T cells during high-grade chronic viral infections. We found a marked aggravation of the CD8 T cell deficiency with increasing age in MS patients, particularly in PPMS…..Accelerated age-related CD8 T cell deficiency and the consequent increasing EBV load might underlie the age-dependent accumulation of disability in MS.”

      Probably also underlies hsct/Alemtuz remission failure with increasing age.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3277686/

  • Safety and efficiency. No one really cares about a 6 hour infusion of magic sauce as long as it works in preventing BRAIN DAMAGE “emphasis on brain damage” and it doesn’t increase your chance of getting cancer, sepsis, PML or male menopause.

  • No more prescribing beta interferon plus Copaxone injectables for people newly diagnosed with MS. They are are painful (and don’t get any better over time); a hassle (always thinking of needle disposal) – and most importantly they are inefficient vs infusions and pills at stopping relapses and progression. (I had a relapse which led to permanent double vision in one eye).

    Earlier this year, I spoke to eight people diagnosed with MS in the past two years. Two young women in their with active MS were put on them by their neuros. So I gingerly suggested they might want to be on something stronger…

    • Not to mention the side effects. I took Copaxone for a few years, the physical and mental problems it brought were unsustainable, I couldn’t carry on so dropped it. It was a relief when it had worked out of my system. I went through all that and for what? It makes me sad when I read on social media that a newly diagnosed pwms has been prescribed it.

  • I agree with Rachel about banning the prescribing of injectables – Dr Aaron Boster has recently proposed about this.

    But something more fundamental needs to change. I look at the neuros who sit on the various ACTRIMS / ECTRIMS steering committees and it looks like an episode of the Munsters. The UK gov is planning to pay old duffer farmers to retire as they are resistant to change:
    https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjryNGRodrwAhUp5eAKHdQZC-cQFjAAegQIBBAD&url=https%3A%2F%2Fwww.bbc.co.uk%2Fnews%2Fscience-environment-57149744&usg=AOvVaw29yI5f1zI_nuXSho0WTt3L

    I’d suggest something similar for the world’s neuros and MSologists.

    As part of their training, neuros / MSologists should spend two weeks with an oncologist and watch their prescribing approach. They could ask questions like “why don’t you start with a weak cancer drug, watch the cancer spread, and then begin on a more effective treatment?”

    Also, neuros / MSologists during training should visit care homes with MS patients and visit local MS Society clubs. They would see what MS often does 20, 25, 30 years on and might conclude that prescribing therapies which are shown to have the greatest impact on reducing CNS damage might be a sensible thing.

  • Hi Prof G, thank you for the opportunity to air my view regarding DMTs. I was quite unaware of my choices when advised about going onto a DMT. I had to do a lot of research myself, which was extremely confusing (as newly diagnosed) and as everyone more or less responds differently in terms of side effects, availability, administering the drug and so on. I found the list and up to date information on the MS Society and MS Trust websites. This I felt at the time – great in one way, but surely all these types of medications available, should have been properly discussed and the reasons why I wasn’t allowed to go on the 1st line medication at the beginning. I was also had to take into consideration lots of views from patients who didn’t want to go on the DMTs and their reasons why (which are for some very personal, but annoyingly non verbal about!). You are put in a position to trust your Neuro, and why wouldn’t you, especially as you have no option to change, as when I tried I didn’t get a reply back and the Neuros available in my local hospital, all were so busy, they weren’t advocating you change. The length of time it took to receive an appointment (here I go again!) – was beyond acceptable, so you are in no position to not go with what you have been given and try and build a relationship, so that you feel okay to talk and express yourself more. I requested to be put on Natalizumab but it was thought that I didn’t qualify (after a meeting to do with funding etc) – it was also said that if I started on a such a frontline drug, there was no turning back! That logic at the time, seemed reasonable but can be argued and debated, depending on how disease behaviour in me! I’m now of the opinion, after much more educating and people opening up a little more, that this should have been a decision for me, kind of joint decision, that would ensure the best outcome, for my quite active MS. As it happens, and like a few others, I’m just about hanging on in there, but I have progression and I’m not quite sure if it is stopping any time soon, it is worse for sure, but as with MS, you hold out hope that you can cope with the progression and wait for your next appointment to discuss a plan going forward. I was also offered Copaxone and I found it so difficult to do and manage, after a lot of work from a Copaxone rep trying to reassure me that ‘I could do it’ it just takes a little getting used to. I was eventually taken off the DMT but felt, I had wasted time, money and was also a little worried that it was such a low level DMT, that it wouldn’t be good enough to do any good! Although, I’m also aware some folk have and are happy with it, so it just shows you too how very different we all are but due to this being MS a disease that has some common symptoms, it also can react differently with each individual in its severity.

    All the best and good luck with your follow up.

  • Did the survey but did not put in “other” option which I should have: a cure! That said all my answers involved making harder hitter treatments first line since that will be the closest thing to a cure. Perhaps if these things were more avail first line newly diagnosed patients would realize how serious this is too even if they’re still feeling ok.

By Prof G

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