51 Comments
Jan 26, 2023Liked by Gavin Giovannoni

To me it makes complete sense to use AHSCT and alemtuzumab first line with all the supporting data where the risks are lower and success rates higher in the younger/less disabled.

When first diagnosed I think it is hard to understand the risk of MS (I don’t know that this is ever explained at diagnosis) and include this in the risk/benefit analysis of treatment. Most newly diagnosed are directed to the MS Society or MS Trust to look at DMT information; many (looking at social media) are put off by the risk of side effects. I don’t think the charities do a good enough job at framing the risk/benefit; there is far less information about the monitoring/risk-mitigation of side-effects and their incidence, and the very high chance that MS will cause irreversible damage. I've emailed the MS Society a few times about their drug information and treatment algorithm but feel it is a complete waste of time. I can imagine it is very difficult to have time to explain options to patients during DMT consultations, perhaps this could be helped with the use of technology providing better information in advance of DMT meetings or discussions had with other HCPs prior to meeting neurologists.

It is another point you raise, where neurologists decide not to offer alemtuzumab/AHSCT that I find appalling. It’s the arrogance in deciding that keeping someone alive is the most important factor and removing the option to have one of the most effective IRTs and potentially a better quality of life. Although I could be wrong, I doubt anyone at my old treatment centre (possibly the one you refer to in London) will be getting referred into the Star-MS trial, referred for AHSCT, or given alemtuzumab; I believe the anti-AHSCT rhetoric is stronger than ever, just ridiculous! There seem to be many cases on social media of people being actively blocked from treatment that they should be entitled to or relapsing and deteriorating due to general inaction. It sometimes feels scandalous; I wonder with time whether we will be looking at a scandal like the sodium valproate one, or the maternity cases, where so much was known or treatments were available, and not enough was done, or perhaps legal challenges as you suggest.

Thank you so much Prof G for doing this talk and advocating for AHSCT as an option.

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Jan 26, 2023Liked by Gavin Giovannoni

I was finally diagnosed with highly active ms after years of my previous neuro telling me that it was only sensory and very mild, in his words 'others had it worse'.

I had been on Avonex and Copaxone under him and finally left his care when told he told, wheelchair bound with the use of one arm, me 'there's nothing more I can do for you'.

My new neuro immediately recognised my 'new' diagnosis after two relapses confirmed by mri and I had Alemtuzumab. After the second infusion I felt that I was declining further so self-funded AHSCT in Moscow in 2019, even thoughmy neuro had agreed to put me forward for HSCT in the UK. I just didn’t feel I had time to waste.

It was very late for me but after 3 years of daily independent rehabilitation at home I am healthier, fitter and am actually experiencing small improvements.

Since having AHSCT I have been asked to speak to two newly diagnosed pwms and while I don't want to scare them they are fully aware of my condition. One has been put on Ocrelizumab and considers himself to be well treated. The second however really scares me. She is a young single mother and lost the use of her arm for a while. She is not on any DMT and has been told that she's fine now and should come back if anything else happens. I suspect she has been seen by a general neurologist rather than an MS specialist.

I have never met her and after our latest WhatsApp conversation when I asked her whether she had actually seen an MS specialist she has stopped replying. I told her initially to get an appointment at Queens Square or with you which she obviously hasn't. It breaks my heart that she is being advised so poorly.

When I was in Moscow the youngest person I met was a 19 year old from Algeria. He had travelled there alone with little disability and huge fear for his future. He is now thriving and works hard to repay his family for their investment in his health.

As far as I am concerned, the harder the better and the sooner the better. I have three adult children and I would sell everything I own to give them AHSCT as a first line treatment.

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Jan 26, 2023Liked by Gavin Giovannoni

My daughter, dx at 15, now 18 is fortunate to be having HSCT in London this summer.

Fortunate because as yet she has not accumulated major disability, however, unfortunate in that, although it is agreed by the HCPs involved HSCT is the best option long term, she narrowly misses NHS criteria. We are not wealthy so are having to make significant financial sacrifices which will undoubtedly impact long term as well as delve into the uncomfortable world of fundraising to pay for her treatment.

Yes, this treatment is risky. My mum had MS too so we’re all too aware of the risk of under treating.

MS took my mum, it’s not taking my daughter too.

It’s disgraceful that neither the NHS or our health policy will not fund her treatment but as parents we feel we have no option but to ‘cough up’ before it’s too late.

In my opinion it is vital to long term outcomes that ALL treatment options are discussed at the earliest possible opportunity. Imagine the time this would save in the long run.

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Jan 25, 2023Liked by Gavin Giovannoni

When it came to Tysabri no one had the time to explain everything to me. I was going down hill rapidly and my MS nurse whom I trusted implicitly (her sister has MS) helped fight my case to prove that I qualified for it. My husband and I were given a DVD produced by the drugs company. It scared the hell out of me but it wasn’t as scary as becoming severely disabled. When it came to HSCT I spent a year researching it. I applied to have it done in Liverpool and was told that I qualified for it there but the funding was pulled. I saw a London neurologist privately but was told that I didn’t meet the criteria in London.

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Jan 25, 2023Liked by Gavin Giovannoni

This happened to me. I had a twenty-minute phone appt in the lockdown era, in the course of which I brought up the possibility of switching drugs. My neuro clearly and concisely explained the three options available to me, which I understood and promised to think about, letting him know asap of my decision. Once home I had so many conflicting thoughts and felt so indecisive that within a week I realised I was incapable of reaching a conclusion. I had the facts, I'd done my reading and I was no further on. It resolved only when I asked for a private appointment with my NHS neuro. Forty minutes with the person who had seen all the pros and cons for himself and knew me did the trick. The 'what if..?' questions, the risk-benefit reality, the facts balanced against my current clinical situation... are issues that need dialogue, not information booklets. It was money well spent because after the forty minutes I knew exactly what I was going to do and I never had another minute's doubt.

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Jan 26, 2023Liked by Gavin Giovannoni

In addition to my earlier post…

Off topic but…

Advice needed!

Last Ocrevus infusion 17/12/22

HSCT planned mid/end June ‘23

Should another Ocrevus infusion be given in early June ‘23 when it would ordinarily be due? Would this help reduce the risk of relapse prior to transplant?

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Jan 26, 2023Liked by Gavin Giovannoni

My point was that I feel we need to invest more resources into stem cell therapies and not stop at AHSCT

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Jan 26, 2023Liked by Gavin Giovannoni

AHSCT should definitely be available to patients as a first-line treatment option. It should be patients choice. I didn't fit the criteria for NHS AHSCT or the STAR-MS trial (I really tried), but at least got Alemtuzumab at Royal London.

It wouldn't work for everyone, but patients should at least be handed or emailed written information about their DMT options.

Looking back at the horror or my life, 30 years with undiagnosed and untreated MS while the NHS refused to refer me to a neurologist and give me an MRI scan, I don't think it was due to lack of HCP time. It would have taken GP's a lot less time to do one referral than to deal with me being severely disabled and begging them for help they never gave. Money and bigotry were, I think, the reasons.

When I first had an official MS diagnosis, it took about 9 months to be given a DMT. I was put on Plegridy, without having any options, then Copaxone then Tecfidera. I know now that those were bad choices by the neurologist, but at the time I was too ill, traumatised, and relieved to fight. I don't think the neurologist in Yorkshire made those choices because of time. It comes down to money and the rules/'guidelines' put in place by the hospital/CCG/NICE, etc.

I do need more access than I have now to a neurologist, but it is what it is. In the end I diagnosed my own MS & paid to see a neurologist, and I know it's still on me to do the research and make the decisions, but now I can access diagnoses & treatment which is what matters. But I will say, because my MS nurse knows my partner and I, that did mean I had access to treatment my neurologist wouldn't have given me otherwise, because he doesn't know us and doesn't know what we're capable of handling.

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Jan 26, 2023Liked by Gavin Giovannoni

Thank you so much for replying! I saw Dr Turner privately at The Shard (London Bridge Hospital), and Professor Sharrack privately in Yorkshire, both said the private HSCT criteria was exactly the same as the NHS criteria. But that may have changed, things change all the time. Do you know in what way London Bridge's criteria was different to the NHS's? I don't fit the NHS criteria because I haven't failed Lemtrada or Ocrecus, and I didn't fit the STAR-MS criteria because of the 'you have to have had MS less than 10 years' rule. Again, good luck, I'm really glad your daughter had support!

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I have had ppms for over twenty years and I have never been offered any form of treatment. When I asked about AHSCT was told I do not meet the criteria, but I could self fund or go abroad.

I believe all pwms should be offered AHSCT

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Jan 26, 2023Liked by Gavin Giovannoni

Dear Prof G,

1) Should those of us in the early stages of RRMS who have been given Ocrevus be concerned about its efficacy long term?

2) if so, how can I convince my neurologist to put me on IRTs?

Thanks for everything!

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Jan 26, 2023Liked by Gavin Giovannoni

I was offered AHSCT on my first appointment with my neurologist, but it was just mentioned in the list of treatment options available to me. No in-depth discussion about it. I was only able to discuss all the treatment options in depth with the nursing team, who gave me a load of literature from the MS Trust to read. That was my sole source of information. The mortality figures on AHSCT stated in the literature scared me at the time, so I discounted it straight away. It was only later when I became generally more informed that I realised these figures were poorly represented. If I'd been able to have a proper discussion with my neuro at the time, I think I would have chosen it.

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founding
Jan 26, 2023Liked by Gavin Giovannoni

My neuro recommended aubagio. I struggle with that as it's one of the least effective therapies. He says hes recommending because my MS is 'mild'. Yes really. And in a certain context it is. But we all know where it's bound to go over time. So why not prescribe Lemtrada or Cladribine or even HSCT? Why do I eventually need to suffer disability? I'm considering going to the US to pay out of pocket for Lemtrada or Cladribine.

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Jan 25, 2023Liked by Gavin Giovannoni

Thank you for sharing your thoughts around AHSCT and Alemtuzumab. I have been seen under two hospitals and two neurologists before deciding my treatment plan (Queens Hospital and Queens Square). My MS is active and I am disappointed that neither neurologists discussed the possibility of AHSCT with me or explained this treatment was an option. I was offered Cladribine or Kesimpta. When I asked about Alemtuzumab I was told that this DMT is not recommended due to its risk factors and outdated (which was also disappointing to hear).

I decided to go with cladribine and a currently in my first year, I think both Alemtuzumab and AHSCT should be offered as a first line treatment.

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Jan 25, 2023Liked by Gavin Giovannoni

Stem cell treatment options play a significant role in the toolkit of treatments. AHSCT I understand only works for a certain period of time but should still be offered on the NHS. Greater investment needs to be made in other stem cell therapy research such as Professor Gianvito Martino, neural stem cell therapy. Covid proved that when enough resources (time, energy and money) are pumped into something the advances are huge. It also showed we need to find other ways of working and communicating. Time is needed to explain affect which DMTs are offered, but how and when requires some new thinking as well.

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I am eligible for Alemtuzumab and have expressed that I would like to start it. However, my centre (Queens square) have said they are no longer offering it due to the side effect profile . I am currently on Ocrevus which is fine but I’m concerned that I’m not getting the best treatment for me. I have had MS since I was 16 so almost 22yrs so I’m not eligible for AHSCT. I have highly active disease but I have no disability and I’m otherwise very fit and well. I desperately want to stay well, I have an active practical job and a young child! Could you recommend any centres that would be willing to deliver Alemtuzumab so I can at-least discuss starting it?

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