Early ECTRIM Blues

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I arrived in Stockholm this morning on one of the first flights out of Heathrow. Terminal 2 was chaos. I assume everyone who was meant to be on one of the BA flights that was cancelled, transferred onto a competitor airline in Terminal 2. My flight was full and I am sure I was allocated the last seat on the plane. A small half-sized seat at the far left of the plane. The seat was up against the toilets and didn’t tilt. It was very uncomfortable. Fortunately my discomfort was short-lived and temporary, not like having MS. 

I have given my first talk this afternoon around a case study of the ‘real MS’; smouldering MS in someone who is relapse and MRI activity free on fingolimod, but is getting markedly worse. Do you tell them they have SPMS and stop their fingolimod? Or do you escalate their treatment and hope for the best? 

The problem with labelling someone as having SPMS is unhelpful without another treatment option or strategy in place for them. Telling someone with MS you now have SPMS is like telling them they have a terminal disease, i.e. it is now all downhill from here. At least having a potential new treatment for SPMS will allow us to offer some hope. The problem that I have is I have no evidence that switching someone who is NEDA2 with worsening MS onto another DMT will make any difference to them. This is an evidence vacuum that needs filling. 

I am involved in another meeting tomorrow afternoon run by the MS in the 21st Century initiative to tackle this thorny issue about when and how to tell someone they have progressive MS. In reality, I think this is an academic exercise in that there is now ample evidence from a biological perspective that everyone has both relapsing and progressive MS together and the latter is there from the start. What we are trying to do with our treat early and effectively message is to protect brain reserve so that clinically apparent worsening stage of MS occurs much much later in life,  Do you agree or not? 

At the afternoon and evening meetings I attended, I was asked if there would be anything new being presented at the ECTRIMS. To be honest with you I don’t think so. Sure there will the positive ponisemod and ofatumumab studies, but these are really old news. Both these drugs are ‘Me Toos’; ponisemod being the 4th in-class S1P modulator and ofatumumab a 3rd generation anti-CD20 monoclonal antibody. There is really nothing new here. Me toos are very low hanging fruit for Pharma with much less risk associated with their development. Believe me, there is nothing transformational that is going to happen on Friday when we get new sets of data; only old news. What we will be arguing over is the percentage differences in relative efficacies between DMTs. We won’t be saying wow what an interesting finding; this is teaching us something new about MS.

What the MS field needs is some novelty, something new in terms of a mode of action, a new class of therapy, a new insight, a new paradigm, etc. That is what I will be looking out for and not the same old, same old. 

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.

17 comments

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  • Tell someone they have SPMS, by all means, but before this, they should have been told to keep active and follow the healthy lifestyle. Too much emphasis relies on DMT, without the patient responsibility to keep well. It reminds me of a boss I had that was given Statins and then started eating an unhealthy diet.
    Let the patient know that they may still have an MS attack and this can be treated to reduce the length of it. It’s important the PwMS recognise the attack when it comes.
    Sounds brutal, but that’s the reality.

    • Unfortunately, the adoption of a healthy lifestyle and taking personal responsibility for your health is a very complex issue and is largely determined by the social determinants of health. Nudging people and individuals takes more than just telling to do X or Y.

      • Really? I’ve known pwMS campaign to get treatment that may or may not work, then chain smoke, It’s not that complex. It’s up to the individual, if they don’t try they will never ever know.

  • 100% agree with everything you just said. It’s clearly one disease, not only do we need a way to treat the progressive part ( what good is “NEDA” if you’re slowly having a harder time walking? Big whoop) we also need more ways to MEASURE progression. I also struggle why patients aren’t offered every possible treatment available-and yes this must include HSCT- right from the start before the progressive lesions we don’t know how to stop from worsening show up in the first place. As you say, the treatment pyramid must be flipped. Time is brain!

    • I have made the case for HSCT 1st-line; apart from a few well-informed MSers it likes we don’t have any takers for this treatment strategy.

      • Let us “well informed ms-ers” actually have access to this treatment and strategy and we will evangelize for it! Demand will change. (I do not say this lightly, I am a professional marketer…)

  • Absolutely pitiful!

    I wish a reputable neurologist would stand up for their patients on the large stage of ECTRIMS. He/she should state the obvious that MS treatment, especially in a progressive state, is a disgrace and is in a dire need of a revolution.

    I suppose this will not happen until the conflicts of interests are removed when they retire.

    I am not sure how many involved in these trials with recycled or copy cat drugs can look themselves in the mirror.

    • Please don’t over-interpret my posts. I wrote this last night when I was very tired and jaded; MSed-out. We can learn, and should, learn from all new data that emerges in the MS space.

  • If you have a failing person on fingolimod and have to switch to siponimod what is the evidence that siponimod is really that much better than fingo?

    • There is no evidence in this space. Siponimod may be better on average as it has a different CNS profile, but this is speculation.

      • I agree. We need a switching study or a head-2-head study to see if siponimod has a different profile to fingolimod in terms of its efficacy and CNS effects.

  • With my slow PPMS, I never had to deal with the disappointment that the drugs didn’t work. But I can’t say I’m disappointed that my body hasn’t been subjected to pointless toxic ‘therapy’.

    Thank you, Prof G, for holding a torch for progressive disease, perhaps the true disease.

  • “Telling someone with MS you now have SPMS is like telling them they have a terminal disease, i.e. it is now all downhill from here.” At last someone gets it and is being honest. This is the reality. To tell someone they have a disease for the rest of their life and that they will be progressively get worse (however slowly) is devastating news. is it not surprisingly that researchers find higher levels of depression with people with MS!

    “Believe me, there is nothing transformational that is going to happen on Friday when we get new sets of data; only old news.” I’ve been moaning about this for the last ten years and have been criticised for being negative. The question that needs to be asked is why? What have all the U.K. research teams (Cambridge, Imperial, Glasgow, Barts, UCL Edinburgh….. been doing for the last 5 years? MS Frontiers earlier this year was another damp squib. We need a cull of current researchers (goodbye to anyone over 55), bring in researchers from other areas (eg cancer research), ban research into EAE, ban research into relapses, ban research into socio-economic aspects (we already know that we are depressed, are financially worse off, our relationships are under strain…). Focus on cause of smouldering MS, role of viruses, neuro-protection, neuro-restoration. Main focus should be on what the patient wants – not to get disabled / more disabled.

    The MS research world needs a bloody good shake-up and new blood / ideas. Young people are becoming disabled and it’s scandalous that after 50+ years of intense global research we still don’t know (I) why or (II) how to stop it.

    You are spared my cull Prof G purely because of your honesty. You better come up with some proper treatments soon (5 year target) or the Clapham Gardener could find himself back in Jo’burg (believe me you would not like that).

    • I gave up years ago expecting to be cured. I’ve followed this blog with interest and have seen invites to take part in clinical trials. The eligibility to take part is such, that only those likely to have a good outcome. When I meet young people with MS hopeful that the treatment that are given is going to save them from the dreaded wheelchair. Give me my 55plus Neurologist any day. Maybe the Pharma companies need to take a one hard look at themselves. I don’t need an MRI scan to tell me I’m having an attack, the money is better spent elsewhere. Scanners miss cancer, so what makes an MRI any different? I don’t agree that anyone over 55 should lose their job, it will take years of knowledge to solve this. In fact I often see research branded as new, that was investigated years ago.

  • What is very clear from your post, and from my own experience of having MS, is that there is a major problem with the labelling of ‘stages’ of MS. It is one disease, and should be described as such. Patients need to have knowledge and expectations of their future right from initial diagnosis. Yes, patients must be told they have SPMS, and given all the information and choices that they have, this must not be kept from them ‘in case they feel downhearted’. They must be told, and need to know, and should have known right from the start.
    It’s about time there was a change in description of MS to reflect the course of the disease more accurately. This could really help people to deal with their own future. There may not currently be treatments to help with the smouldering disease, but knowing about will definitely help all of us.

By Prof G

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