Last reply 5 months ago
Choosing the right DMT

Over at the BartsMS blog (I have started reading more and more there as some of the content suits my inner-nerd need to have deep and boring science type chats), one of the team has written this excellent post.

It isn’t too heavy to read at all and a very good opinion piece, not saying what you ought to take but explaining why the system can appear so complex and confusing.

https://multiple-sclerosis-research.org/2019/01/straight-forward-patient-education-which-gun-would-you-chose-its-as-easy-as-that/

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mtvesuvio
5 months ago

Do you feel they favour lemtrada/mavenclad over there? Just a feeling I get. I can’t tell if he even likes ocrevus hahahaha


dominics
5 months ago

I think it is horses for courses. Ask Prof G and I think he’d like everyone to have the option of HSCT as well.

There are videos with our MS Reporters where he is talking in favour of Ocrelizumab.

Ask them. Nothing to stop you remarking. No such thing as a dumb question.


mtvesuvio
5 months ago

I’ve just watched a video with him talking and wow listening to him talk – his passion. I wish he was everyone’s Neurologist lol! Meanwhile I just read a post my Neurologist wrote about whether Meda is more realistic than Neda…

Yes, I have seen on the blog he seems quite for HSCT as a first line treatment.. i’m with him, it is our risk to take. It should be an option!


dominics
5 months ago

Agreed. I’d have HSCT in the UK privately tomorrow if I had a spare 80k floating around. I slip outside of the present criteria on a few of the metrics.


grandma
5 months ago

Have read the blog over the last couple of days, bit too technical at times for a mere mortal like me, but I especally liked the analogy with the guns. Wouldn’t know which one to chose myself, but can understand the question. Very interesting!👏😜


birdboy
5 months ago

Thanks for sharing this @dominics


cameron
5 months ago

My daily read, which has replaced any need to do my own investigations. If it’s too technical I just skim, but there are real gems in there, especially the ‘clinic speak’.


guppy
5 months ago

@dominics – regarding your comment ‘There are videos with our MS Reporters where he is talking in favour of Ocrelizumab’, can you point me to that link?

I’m trying to choose between Lentrada & Ocrevus at the moment and am interested in reading/watching every decent thing I can on the subject (that has included several of your previous posts btw so thanks for those).


stumbler
5 months ago

dominics
5 months ago

@guppy , This is a serious decision. There isn’t a right answer that can be given unless it is a decision between you and your neurologist. Let me make a few qualifying remarks to add some context.

In general terms, there is a definite shift amongst a core of well-respected neurologists towards the idea of aggressive early intervention in MS having the best long term outcomes.

Here is where it gets quite nuanced; though many will tell you that they are very sure it is the right way to approach treatment – their concern is not just the now but the long-term brain (and spine) health – in a holistic manner there is no unequivocal trial evidence that unambiguously supports this.

Sounds like an episode of Yes Minister to read my writing, I understand. However, scientists like absolute certainty. (This is why quacks flourish because they aren’t troubled by this, offer simple answers and people latch onto that.) To have the ability to make unequivocal yes/no statements such as: , It is best to treat aggressively’, that is made into policy then they need evidence. Many doctors are uncomfortable with anything other than absolute certainty.

There is much evidence that points towards this approach. Nevertheless, the very first controlled trial to examine, a using fully sound and purposefully designed protocol that is looking for an absolutely unequivocal evidence-based answer to this strongly – and most likely correctly held belief – is about to start. 800 or so patients across a mix of global centres. How do I know this? Because of a friend – a neurologist – who is one of the lead researchers along with another UK neuro told me the other day. They have been 24 months in securing funding and support, no mean feat for a global clinical trial.

But back to your original question: The MS Trust has an excellent decision tool for selecting a DMT here https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The same friend who told me about the new trial to test the hypothesis of the increasingly widely held belief that early intervention with a potent DMT is as good as people believe also sits on the medical advisory panel for the above site. The MS Trust is a respected and reliable source of information.

Personally, I think you are fortunate to be faced with such a choice. Aston Martin or Ferrari. Some people are risk averse and despite the evidence, they want to ease into things. The general view is that the patient is the ultimate arbiter in most cases of medical intervention. When you are on board there is ample evidence to suggest better compliance and therapeutic effect. In many ways, the infusions are not as susceptible to people skipping doses or failing altogether. I am Ocrelizumab and it is so lovely not to have to remember the twice-daily Tecfidera.

Perhaps you can phrase the qu to the neuro very specifically (they hate this and try to squirm out so you have to block them in by asking cleverly!), “If you were the patient and presented to a neurologist, with exactly the same symptoms, progression, disability etc as I have to you AND knowing what you know about the two drugs you have recommended to me, which would you choose and why?’ The supplementary question to this is, ‘I see, thank you. Having said you’d choose XXX please can you help me to understand why you didn’t choose YYY?’ A good neuro ought to be able to be very clear with both.

It is your brain, spine, respiratory tract, kidney etc so again, a decent neuro ought to be very supportive of you seeking a second opnion. Ask them who’d they’d recommend and why. Preferably not their colleague down the hall but one in another hospital and also holds a primary interest in MS.

Hope that helps.

Best,

Dominic


dominics
5 months ago

dominics
5 months ago

And hot off the presses https://multiplesclerosisnewstoday.com/2019/03/01/actrims2019-use-of-ocrevus-at-cleveland-clinic-backs-phase-3-trial-data/

In the video above Prof G talks about front-loading risk with immune reconstitution therapies, rather than a longer-term accumulation of risk with some of the older suppression type meds.


dominics
5 months ago

@guppy – part 1 of a 4 part on Alemtuzumab by Aaron Boster MD – https://www.youtube.com/watch?v=-OgvttCGJEY


guppy
5 months ago

Thanks @dominics & @stumbler. I’d found that Prof G video (from a previous post by @dominics) but have just rewatched it from 3mins in (the bit about front-loading of risk versus accumulation over time – right?). Perhaps wrongly, I hadn’t read any preference one way or the other into that (i.e. I didn’t read it as any kind of endorsement for Ocrevus) – maybe I’m missing something though.

I guess I should say that I am very much persuaded by the potential benefits of treating hard & early and that’s what has narrowed my choice to these 2 drugs only – they are the two category 3 drugs that are available to me (as I don’t fit the criteria for Tysabri).

I think I’ll push my neurologist for a clear opinion as you suggest – good advice me thinks. But, I was also keen to reach some kind of conclusion myself and am really struggling to weigh up the pros and cons of these two.

The MS trust tool is good as you say but doesn’t go to a great level of detail so has only got me so far. The only thing I’ve found in terms of a direct comparison between the two is the following but I’m not sure it’s a great source really (?) so haven’t given it too much weight.

Lemtrada vs. Ocrevus. I have been asked to explain the major differences between Ocrevus and Lemtrada, including risks…

Posted by Advanced Neurosciences Institute on Saturday, June 24, 2017

If anyone has recently chosen between these 2 drugs and would be happy to share the factors that were important to them in their choice (e.g. secondary autoimmunity, IRT vs. maintenance, Monitoring requirements) or any resources they found that directly compared the two, that’d be great.

I’ve not watched that alemtuzumab video @domincs – thanks for that.


dominics
5 months ago

@guppy, I had decided that I wanted off the Tec trial and onto something – Alemtuzumab was available and Ocrelizumab was about 6 mo out from availability.

I would have gone w. Alemtuzumab but one of the London mob talked me out of it citing kidney risks and saying that he’d recommend that I was started in Ocrelizumab as soon as it was available.

So, I waited but in the meantime got all my ducks in a row ensuring I had up to date MRI, a recent exam etc.

Bingo – here I am.


guppy
5 months ago

Thought I’d add this Aaron Boster video to this thread as it talks about who it the right kind of patient for Lemtrada in terms that, I think, make a lot of sense. I’m not sure if Ocrevus was FDA approved when this was filmed (?) so you need to watch it with that in mind.


dominics
5 months ago

@guppy You’re correct re the dates. Ocrelizumab was awaiting approval but was out of the OPERA trials by then.

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