If you are a Healthcare Professional (HCP) and are interested in getting up to speed on some advanced topics around the management of MS please take a look at the programme below. We converted our November meeting to be virtual, which has opened some spaces for more people to attend.
Please register via the following link: Advanced MS Academy 4-6 November 2020 Online.
If you have any queries please don’t hesitate to contact me. In addition, if you have any topics you think we should cover please let me know.
CoI: multiple
HSCT – are we ready to offer it first-line?
Dr Ben Turner, Consultant Neurologist, Barts Health NHS Trust
very exciting ! lets hope so !
I hope by asking the question, “HSCT – are we ready to offer it first-line?”, we are pushing the bubble and challenging HCPs to think about treating MS aggressively as early as possible.
Caneco
3 years ago it was zealot land all around
HSCT is still a sledgehammer to crack a nut; I would prefer a nutcracker. The infertility risk, short-term mortality risk, breakthrough disease activity rate and long-term secondary malignancy risk make HSCT, in all its variations, a poor solution for treating MS. This is why it will remain on the fringes of treating MS.
Sadly, the few potential nutcrackers we currently have let the nuts slip out quite often (of course that also happens with sledge hammer) the or get fingers stuck inside…
Prof G. – Thank you for providing an honest assessment regarding the risks and benefits of HSTC. Your balanced approached and commitment to providing both sides of a debate is the reason I subscribe to this blog.
Only someone who doesn’t have MS could say that. Sometimes a sledgehammer is absolutely necessary and the only person qualified to decide that is the patient. Withholding a clinically trialled and proven treatment option is unethical.
When asked on the blog yesterday which DMT would I choose if I had MS, I chose HSCT
https://multiple-sclerosis-research.org/2019/03/1st-line-hsct/?unapproved=57016&moderation-hash=892e89c2c8cb07f855685fef7711ae6a#comment-57016
It is clear that not all DMTs are made equal when it comes to preventing end-organ damage. At the top of the league table are alemtuzumab and HSCT (~0.2-0.25% loss per annum). Both these treatments are NIRTs (non-selective immune reconstitution therapies).
https://multiple-sclerosis-research.org/2020/07/beyond-the-b-cell-cognitive-dissonance/
Alemtuzumab it also a sledgehammer
😉
Obrigado
A smaller hammer that doesn’t cause infertility and secondary malignancies and the mortality associated with alemtuzumab is much lower than that with HSCT. Choose the hammer which suits you best, but be careful about not demolishing out the structural wall that then causes your house to fall down and crush you.
So why are you advocating it to be 1º line
My Medium post on framing the DMT Debate explains why I take this position.
Will any of these presentations be on line to access after if we are not able to attend?
Yes, but only via a firewall for members of the MS Academy. I will speak to the company and see if they will make them available for all to view.
I’ve got a few questions :
Why was the research into remylination and citicoline stopped (when results were promising; oh but it was reclassified as a supplement)
Why isn’t Savitex available on prescription;
(despite what NICE said) for pwMS to help ease symptoms and improve quality of life?
When is any effort going to be put into finding a cure?
Regarding your Sativex question, the reason is cost. It is too expensive.
(1) Sounds like a nutriceutical they dont get developed
(2) costs too much
(3) Happening all the time
Citicoline was always available as a supplement. It has modest evidence as a nootropic and is generally sold as such. Ironically I used it for a while about 10 years ago, maybe I should try again. Same for ALCAR BTW.
This might be an interesting topic for investigation – maybe nootropics could help some of the cognitive issues. Sadly there seems to very little in the line of dependable studies, no doubt partially because they cannot be patented.
Thank you for responding
Mouse doctor talked about citicoline 6 years ago in this blog when it was a pharmaceutical and promising remylination therapy – then it got reclassified as a nutriceutical and all talk stopped and that hope was abandoned ? – https://multiple-sclerosis-research.org/2014/12/remyelination-with-citicoline/
“After cuprizone-induced demyelination, CDP-choline effectively enhanced myelin regeneration and reversed motor coordination deficits”
As for savitex it comes in at at a cost of £400 – which is far cheaper than a dose of DMD ?
We don’t hear anything about cures , we hear about DMDS destroying quality of life and ultimately failing