Jan 9, 2023·edited Jan 9, 2023Liked by Gavin Giovannoni
I’m a person with MS who has recently been told by my consultant at NNUH (Norwich) that I must stop taking Tysabri - which has successfully treated my rapidly evolving RRMS for 8 years - because there is no safety data available regarding risks of PML in Tysabri patients post 6 yrs (I’m very low JCV+). I have been told that all they will offer me instead is Tecfidera and to wait for another disabling relapse before I’m allowed anything else. This feels like going backwards to me and leaving me open to certain relapse and disability. Would I be eligible for the trial? It’s a real worry that this is the advice I’m receiving in this day and age and that trials like this aren’t on the radar of our hospital or healthcare providers. I shall certainly spread the word amongst my community.
A heads-up: I am reading alemtuzumab papers this week to raise a "smartish" question on anti-drug antibodies. Please expect an email with charts from me before the end of the week.
I have been listening to this podcast and would like to share my experience and my story, I find the fact there is a faction of MS neurologists do not look on AHSCT as a major choice extremely frustrating. I had to fight really hard agains my initial neurologist to get a referral to Sheffield for the treatment. Even though I knew I fulfilled the criteria.
The treatment has changed my life!
Before I had the treatment I was struggling to function day to day due to fatigue, getting up to go to the toilet was difficult and I would have had to give up work. The driving force in my life was to get AHSCT as I saw this as the best hope I had. I had also seen my father die through MS in 2009 and I was following a very similar tradgectory which meant I was prepared to accept the risks. (which are massively misrepresented). I became eligible for the treatment when I has an immune reaction to Tysabri.
The next question is has it worked?
The answer to this is yes I am now more active, cognitively I have completely retrained as a cloud architect and have been working full time for the last 12 months. This is something I could not have comprehended before the treatment.
Has my disability got better?
I am waiting on my new EDS score however I spent 5 years not being able to use my core. I have now managed to reenguage my core muscles and am learning to walk by not carrying all my weight through my shoulders. This is through being extremely regimented about doing Pilates and Physiotherapy and I now can use my core and my walking is improving slowly.
Given the option again would I have the same treatment.
Yes! It has not been easy but the alternative is a lot more difficult.
Thanks a lot for your informative posts! It's a sources of valuable information for patients beyond the UK too. Fourth months ago I had HSCT (Cy+ATG). Unfortunately after the hospital I got an infection and my EBV titre went very high for a couple of days (PCR value 23 000 UI). Does it mean that my new T and B cells were reinfected with EBV and if so, could it, in your view, jeopardize the treatment (I afraid it did and am considering a second tentative given that the treatment itself went well with zero side effects).
I have been following your posts about smouldering MS, the role of microglia, and about the large interest in BTK inhibitors in MS. That is, I have tried to understand HSCT in relation to fig 3 in your 2022 paper! There is usually much focus about how HSCT affects the adaptive immune system, but I have not seen anything on the innate immune system, though I assume this is also reconstituted. Do you know if BTKi are relevant for patients who have been through HSCT?
If HSCT stops smouldering MS over decades, I would probably not mind if you said to me it was a cure, but I would also appreciate it if you added something like "or at least stops MS for the next X decades into the future". If I have pneumonia, antibiotics could cure it, but I might get it again at some later time in the future - not sure if that analogy works, though...
I was refused access to the STAR-MS trial on the basis that I have had MS for more than 10 years (even though I didn't get a diagnosis from a doctor till 2017). Has that criteria now changed? I did the screening tool and it wasn't asked.
Regarding improving T cell response to EBV, have you considered micro dosing Rapamycin? The data shows it improves vaccine response in people with diminished immune systems(basically reversing the clock). Peter Attia takes Rapamycin for it's general health benefits, maybe it's time for an N of 1 experiment.
Unfortunately in Australia we can’t get aHSCT until we fail 3 DMTs
My main concerns with it are
What is the best protocol? There are a few (aHSCT BEAM etc) and which one is most effective. What is the data on each?
What is the optimal age to start. Eg I’ve seen some do aHSCT at late 30s or 40s and it fails them
Is that a cure? Probably not. Maybe long term remission would be a better term
Also some lax lyrical without really discussing the risks : infertility, secondary auto immune diseases, Covid risks and infections etc
If you are a 29 year old woman does it make sense to get this treatment with the risk of infertility?
What about with Covid and significant risk of infection leading to fatalities.
What centres are the best?
Compare that to say ocrevus or Tysabri. You know the protocol is the same everywhere. You monitor specific risks but that’s it. The experience of Tysabri in the UK, or Australia or the US is the same whereas it differs wildly with aHSCT
I’d love this to be the silver bullet and even my neuro said this would probably be the most effective treatment in our first meeting almost 2 years ago. But alas we don’t offer it first line and I don’t have the cash to go Russia or Mexico during a pandemic.
I would have leapt at the chance to get HSCT in this country as part of a clinical trial, instead of having to pay for it to be done abroad. For me it’s been well worth the money because not only have I been in remission for 4 years but I have virtually no MS symptoms now, which is quite amazing considering that the right side of my body was progressively becoming weaker and when I relapsed I spent months at a time in a wheelchair. The only problem with the word “cure” is that everyone would expect these improvements.
💰Forty thousand American dollars bought me my legs and my life back, and I had five years of bliss. 💪Stem cell is amazing! Twenty five years ago I was diagnosed with MS. After a fairly aggressive beginning I decided to be a pioneer and try stem cell. I opted not to do chemo at the time and was told I’d likely need a booster. When I eventually relapsed, the Israeli clinic I went to had increased prices to $100 000, so I begrudgingly took lemtrada (but it has served me well other than a few pesky side effects). I believe stem cell or whatever they are calling it now is the best and safest chance of a cure for anyone with MS. And anyone who has the opportunity to have it would be doing themselves a huge disservice and quite literally destroying their lives by not doing it. This trial being offered is a dream opportunity not to be wasted. It’s about time stem cell is recognised as a first-line treatment and a cure for the most devastating cruel disease. And yes, all those involved in the industry will be out of a job and the drug companies will lose billlions. But hey, people will have their lives back!
Thank you for your informative articles that give hope intertwined with data. Wanted to PM this question but - wisely- you don’t give that option. Question: Have you or your colleagues looked at complementary healthcare for MS? Curious about this study: 👇🏼
I’m a person with MS who has recently been told by my consultant at NNUH (Norwich) that I must stop taking Tysabri - which has successfully treated my rapidly evolving RRMS for 8 years - because there is no safety data available regarding risks of PML in Tysabri patients post 6 yrs (I’m very low JCV+). I have been told that all they will offer me instead is Tecfidera and to wait for another disabling relapse before I’m allowed anything else. This feels like going backwards to me and leaving me open to certain relapse and disability. Would I be eligible for the trial? It’s a real worry that this is the advice I’m receiving in this day and age and that trials like this aren’t on the radar of our hospital or healthcare providers. I shall certainly spread the word amongst my community.
A heads-up: I am reading alemtuzumab papers this week to raise a "smartish" question on anti-drug antibodies. Please expect an email with charts from me before the end of the week.
Re "We are finding that most MS Teams are not even discussing certain DMTs at AHSCT at their MDT (multidisciplinary team) meetings. "
Not sure how the NHS works, but could this be for budget reasons?
Does anybody by chance monitor the costs of treatments prescribed by MS teams? Is there an allocated budget for MS DMT prescription?
If that be the case, just a few patients on high cost treatment could blow up the whole budget
I have been listening to this podcast and would like to share my experience and my story, I find the fact there is a faction of MS neurologists do not look on AHSCT as a major choice extremely frustrating. I had to fight really hard agains my initial neurologist to get a referral to Sheffield for the treatment. Even though I knew I fulfilled the criteria.
The treatment has changed my life!
Before I had the treatment I was struggling to function day to day due to fatigue, getting up to go to the toilet was difficult and I would have had to give up work. The driving force in my life was to get AHSCT as I saw this as the best hope I had. I had also seen my father die through MS in 2009 and I was following a very similar tradgectory which meant I was prepared to accept the risks. (which are massively misrepresented). I became eligible for the treatment when I has an immune reaction to Tysabri.
The next question is has it worked?
The answer to this is yes I am now more active, cognitively I have completely retrained as a cloud architect and have been working full time for the last 12 months. This is something I could not have comprehended before the treatment.
Has my disability got better?
I am waiting on my new EDS score however I spent 5 years not being able to use my core. I have now managed to reenguage my core muscles and am learning to walk by not carrying all my weight through my shoulders. This is through being extremely regimented about doing Pilates and Physiotherapy and I now can use my core and my walking is improving slowly.
Given the option again would I have the same treatment.
Yes! It has not been easy but the alternative is a lot more difficult.
Dear Prof Gaving,
Thanks a lot for your informative posts! It's a sources of valuable information for patients beyond the UK too. Fourth months ago I had HSCT (Cy+ATG). Unfortunately after the hospital I got an infection and my EBV titre went very high for a couple of days (PCR value 23 000 UI). Does it mean that my new T and B cells were reinfected with EBV and if so, could it, in your view, jeopardize the treatment (I afraid it did and am considering a second tentative given that the treatment itself went well with zero side effects).
Thanks in advance for your opinion.
I have been following your posts about smouldering MS, the role of microglia, and about the large interest in BTK inhibitors in MS. That is, I have tried to understand HSCT in relation to fig 3 in your 2022 paper! There is usually much focus about how HSCT affects the adaptive immune system, but I have not seen anything on the innate immune system, though I assume this is also reconstituted. Do you know if BTKi are relevant for patients who have been through HSCT?
If HSCT stops smouldering MS over decades, I would probably not mind if you said to me it was a cure, but I would also appreciate it if you added something like "or at least stops MS for the next X decades into the future". If I have pneumonia, antibiotics could cure it, but I might get it again at some later time in the future - not sure if that analogy works, though...
I was refused access to the STAR-MS trial on the basis that I have had MS for more than 10 years (even though I didn't get a diagnosis from a doctor till 2017). Has that criteria now changed? I did the screening tool and it wasn't asked.
Regarding improving T cell response to EBV, have you considered micro dosing Rapamycin? The data shows it improves vaccine response in people with diminished immune systems(basically reversing the clock). Peter Attia takes Rapamycin for it's general health benefits, maybe it's time for an N of 1 experiment.
Unfortunately in Australia we can’t get aHSCT until we fail 3 DMTs
My main concerns with it are
What is the best protocol? There are a few (aHSCT BEAM etc) and which one is most effective. What is the data on each?
What is the optimal age to start. Eg I’ve seen some do aHSCT at late 30s or 40s and it fails them
Is that a cure? Probably not. Maybe long term remission would be a better term
Also some lax lyrical without really discussing the risks : infertility, secondary auto immune diseases, Covid risks and infections etc
If you are a 29 year old woman does it make sense to get this treatment with the risk of infertility?
What about with Covid and significant risk of infection leading to fatalities.
What centres are the best?
Compare that to say ocrevus or Tysabri. You know the protocol is the same everywhere. You monitor specific risks but that’s it. The experience of Tysabri in the UK, or Australia or the US is the same whereas it differs wildly with aHSCT
I’d love this to be the silver bullet and even my neuro said this would probably be the most effective treatment in our first meeting almost 2 years ago. But alas we don’t offer it first line and I don’t have the cash to go Russia or Mexico during a pandemic.
Useful podcast Prof G, you're certainly raising awareness of the trial.
Thank you for letting everyone know about this.
Karen
I would have leapt at the chance to get HSCT in this country as part of a clinical trial, instead of having to pay for it to be done abroad. For me it’s been well worth the money because not only have I been in remission for 4 years but I have virtually no MS symptoms now, which is quite amazing considering that the right side of my body was progressively becoming weaker and when I relapsed I spent months at a time in a wheelchair. The only problem with the word “cure” is that everyone would expect these improvements.
💰Forty thousand American dollars bought me my legs and my life back, and I had five years of bliss. 💪Stem cell is amazing! Twenty five years ago I was diagnosed with MS. After a fairly aggressive beginning I decided to be a pioneer and try stem cell. I opted not to do chemo at the time and was told I’d likely need a booster. When I eventually relapsed, the Israeli clinic I went to had increased prices to $100 000, so I begrudgingly took lemtrada (but it has served me well other than a few pesky side effects). I believe stem cell or whatever they are calling it now is the best and safest chance of a cure for anyone with MS. And anyone who has the opportunity to have it would be doing themselves a huge disservice and quite literally destroying their lives by not doing it. This trial being offered is a dream opportunity not to be wasted. It’s about time stem cell is recognised as a first-line treatment and a cure for the most devastating cruel disease. And yes, all those involved in the industry will be out of a job and the drug companies will lose billlions. But hey, people will have their lives back!
Finally a heartfellt post about Hsct
For all the zealots that want to heard
Congrats
NHS Scotland are giving me novatrone there saying to me ahsct is to dangerous there both chemotherapy treatment
Thank you for your informative articles that give hope intertwined with data. Wanted to PM this question but - wisely- you don’t give that option. Question: Have you or your colleagues looked at complementary healthcare for MS? Curious about this study: 👇🏼
https://www.sciencedirect.com/science/article/abs/pii/S2211034822009713