AHSCT works when used straight after diagnosis.

A

Best watch what I say here as Prof Freedman will come to give me a kicking if I get out of line. The MS Society has been asking does treating early and effectively have better outcome than softly softly escalation approach. This study says yes and I would say “duh”. It is the most aggressive immune modulation treatment, of course it is going to work well. However, the doubting miinies will say it is not controlled trial. This will eventually come The UK authors have been waiting to start such a trials for the past few years and once COVID-19 is under some form of control it will crank up to compare HSCT verses alemtuzumab/ocrelizumab. Which will will I suspect the answer is “Duh” isn’t it obvious. Maybe Prof Freedman will tell us if the people are cured.

Das J, Snowden JA, Burman J, Freedman MS, Atkins H, Bowman M, Burt RK, Saccardi R, Innocenti C, Mistry S, Laud PJ, Jessop H, Sharrack B. Autologous haematopoietic stem cell transplantation as a first-line disease-modifying therapy in patients with ‘aggressive’ multiple sclerosis. Mult Scler. 2021 Feb 10:1352458520985238.

Background: Autologous haematopoietic stem cell transplantation (AHSCT) is an effective treatment for patients with multiple sclerosis (MS) who have highly active disease, despite the use of standard disease-modifying therapies (DMTs). However, the optimal time for offering AHSCT to patients with ‘aggressive’ MS is yet to be established.

Objectives: The objective was to explore the safety and efficacy of AHSCT as a first-line DMT in patients with ‘aggressive’ MS.

Methods: All patients with ‘aggressive’ MS who received AHSCT as a first-line DMT in five European and North American centres were retrospectively evaluated.

Results: Twenty patients were identified. The median interval between diagnosis and AHSCT was 5 (1-20) months. All had multiple poor prognostic markers with a median pre-transplant Expanded Disability Status Scale (EDSS) score of 5.0 (1.5-9.5). After a median follow-up of 30 (12-118) months, the median EDSS score improved to 2.0 (0-6.5, p < 0.0001). No patient had further relapses. Three had residual magnetic resonance imaging (MRI) disease activities in the first 6 months post-transplant, but no further new or enhancing lesions were observed in subsequent scans.

Conclusion: AHSCT is safe and effective as a first-line DMT in inducing rapid and sustained remission in patients with ‘aggressive’ MS

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MouseDoctor

22 comments

  • Been on Natalizumab for nearly 10 years.
    No new relapses ever since. No new or enhanced T1 or T2s since starting neither, and I am still alive and well to write this comment.

    Now why they have not discussed BVL I don’t know. Tysabri does not do much on this front.

  • What is “aggressive” MS? Will follow-up extend past 30 months? I’d be interested to see the response out to 10 years.

  • again telling us something we already know, yet we still have to pay thousands to go abroad and get access too it if we want to do anything about our debilitating illness before its too late. such a sad state of affairs, what other common debilitating diseases that do eventually kill you do people have to wait with and become more unwell before they are given access to better medication or treatment ? its quiet inhumane really telling people they cant use top treatments until they lose more function and have a lower quality of life is it not ?

      • volunteering doesn’t give you guaranteed access to ahsct though does it ? i could be put on a less efficacious treatment than i am already struggling to get ? its hard enough to get five minutes of a specialists time at the moment by the time i have waited to get on the ahsct in the uk it will likely be pointless. the pandemic will not likely be ” over” for a very long time judging by people stupidity and past events, so i guess i will just wait until the ms stops me walking and talking by which point i will be told im no longer treatable, not loving that idea, maybe i should fly to russia as soon as they open the boarders and give myself a better chance with putins pocket than i will have with the national health that i have paid in towards my entire working life ? there is so many issues with the way treatment works and the nhs nice and neuros are blind to it! here you guys are writing articles telling us to be informed intelligent patients and how efficacious treatments are for us but then we cant even get contact or taken seriously by specialists let alone get access to treatment that most of us have paid towards throughout our working lives! it is literally the dangled carrot.

          • I would go to Germany, Israel, or others before going to Russia in my opinion. They don’t have the same Ethics as most, probably in line with Mexico. Thus, danger, danger will Robinson.

            If the USA wasn’t Greedy, we would be doing HSCT already per my research. If Legality is the problem, Someone could start a clinic in Texas, USA where the Liability is only $250K for Malpractice since 2008 vs California has no cap on Malpractice.

            There are No Laws stopping HSCT in the USA, not a drug but a Protocol. We need courageous Dr’s and etc, including the millions of dollars to start the clinic, but doable. I am a Pharmacist with MS in my 50’s, thus I have researched starting a HSCT clinic for years because I see the Travesty. Too many profit takers vs doing the right, which is HSCT protocol in the USA. Too many would lose their Cush positions if HSCT was the FIRST DRUGS OF CHOICE vs today’s choices.

    • Dan I feel your pain and frustrations. What I find frustrating is HSCT has been studied & given to MS patients since the 90’s all over the world, probably thousands of patients treated with excellent results.

      Obvious to me and others HSCT is suppressed for obvious reasons. In the USA, all the generic drugs utilized in HSCT protocol are inexpensive/available, including the Stem cell therapy for over 20 years in the USA. All I hear are excuses, blah blah blah, we need studies, no we don’t, the studies have been done by others. Every Modern Country has HSCT today, except for the USA.

      Nevertheless, the dust has settled, the truth is right in front of our faces=too many would lose their Cush positions in the USA. Pharma would lose countless billions if HSCT is given to 10’s of thousands in the USA. Insurance does not want $100k plus price tag for HSCT either, and the Universities would lose the precious FREE Study funds. Pharmaceutical industry would see a drop in all the MS drug sales, especially the bandaid drugs like Tysarbi/Ocrevus and all the other oral versions reducing yearly sales by Billions. See the pattern.

      Someone should be accountable for limiting the access of the # 1 Drug/Treatment Of Choice proven to stop MS for up to or more than 10 Years.
      Cold blooded young MS patients/others who are severely Disabled & Suffering miss their chance to beat MS due to CONFLICTS OF INTEREST mentioned previously. I dabble and dream about starting a HSCT clinic in Texas, USA, the perfect place to start a HSCT clinic because of Tort-Reform, Tort-Reform Malpractice in Texas is limited to $250K to attract more Dr talent since 2008. Thus the Liability is much lower in Texas vs California with no cap on malpractice.
      Cmon down to Texas Prof G, I show you around and I know Dr’s and Pharmacists to help us!

      I am 7 months post Lemtrada rd2, doing ok, still walking. I am in my 50’s, probably not a HSCT candidate NOW, bummer. I would rather be post HSCT, I should have traveled to Germany in 2013, but I wasn’t given the HSCT choice, MS blurred my thought process, I lost control of my destiny, and the $100K plus price for HSCT is nuts for a private payer.
      I don’t believe USA Dr’s really follow the oath like the UK Dr’s like Prof G, you are transparent. American Dr’s do 20 minute visits, see ya in 6 months and you never hear them advocating for us, all about the numbers and status quo.

  • I wonder how early is early enough… Probably varies a lot? My PPMS kicked off in wholesale fashion in 2000, but I think I may well have had early, subtle symptoms 10 years before that. My MS has been characterised by creeping, slow, slow progression. Not relapses.

    For me personally, HSCT is nothing interesting. I’d rather read about the latest efforts to detect dark matter.

  • Primum non nocere springs to mind after the obvious finding. Does the full paper include a power calculation to ensure n is adequate to determine the mortality rate attributable to the intervention?

    • This is a retrospective study in which all patients with
      ‘aggressive’ MS, as deemed by their treating clinicians, who underwent AHSCT as a first-line DMT in
      Sheffield (United Kingdom), Uppsala (Sweden),
      Ottawa (Canada), Chicago (United States) and
      Florence (Italy),

  • Well colour me surprised! I think possibly I have been saying this
    since 2014!!!

    I was diagnosed on 12th Mar 2014 after a week in hospital. I had already decided on HSCT before I even left hospital. I had my name on the 12+ month waiting list for HSCT in Moscow, that same week. I declined all DMDs. I saw no point messing with my body in advance of getting HSCT. I cleared the waiting list at exactly 12mths after diagnosis and was transplanted on 12th March 2015.

    It was my first-line treatment. My body was ‘clean’ when the HSCT treatment began. I was EDSS 6.5 when treated and am now around 3.0. EDSS. Never in a million years would I have waited even 24hrs longer than necessary. I would have flown to Moscow, the same week as diagnosis, if that had been an option.

    HSCT should be first-line for MS in the same way as it is for cancer. I truly hope to see that become a reality in my lifetime (which luckily should be a good bit longer now, thanks to HSCT). 😊

  • Ahh a challenge from my dear colleague the MOUSEDOCTOR! How can I refuse an opportunity to “square off” with him? Not to overdo the analogy to sport, what we are talking about here is the realization that some MS patients declare their disease only after a heavy accumulation of damage that was either asymptomatic, blamed on other non-disease reasons (e.g. shoes were too tight) or simply was well compensated until, well compensation failed and symptoms and signs emerged. For such patients it was felt there was at best “one shot” at controlling disease, sort of the “hail Mary” pass in American (grid iron football) when the clock is running out and there is but one play to make. For such patients there would be no time to try and fail at another treatment. Fortunately, it is rare that such patients exist, but when they do, it is important to recognize the option of the most aggressive treatment today.

    • Really like Prof Mark S Freedman words

      Saw most off is talks on YT

      But the most important word we ever said in those videos was

      “Time is brain”

      Thanks Prof Freedman

    • I am one of those rare patients. My EDSS went from 0.0 to 6.5 in just over 12 months. I will be forever grateful to Dr Federenko in Moscow, who has never insisted we try
      meds first. My neurologist in London refused to refer me for HSCT in the UK, even though I had a haematology backing.

      First-line for cancer.
      First-line for MS.

      • So good this worked for you! Could you please share which kind of MS you were diagnosed with? PPMS? Or aggressive RRMS? Thank you

  • Any theory on whether you would retain any immunity from covid post hsct if you were vaccinated beforehand? It’s a cruel time to be newly diagnosed in the middle of a global pandemic. I understand why it wouldn’t be considered a wise move to go to Russia at the current time MD2 but covid aside, is this not considered to be one of the most experienced centers?

    • Seeems to be a paucity of data published i reputable journals on the results of pwMS getting HSCT in Russia. Last paper I’ve seen is more than 5 years ago.
      Just sayin’…………….
      And I’m afraid numerous Facebook testimonials don’t cut it.

      • A useful insight….thank you. So is there a recognised centre of excellence in the EU? Outside of the UK I mean, which is sadly out of reach

        • It seems like Sweden and Italy release quite a lot of papers but I can’t shake the feeling that they mostly iterate over the same population again and again

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