I had Alemtuzumab in 2016 and 2017, was relapsing frequently after round two and needed a full thyroidectomy in 2019. Commenced Ocrevus in late 2020, relapsing again frequently. My excellent neurologist here in Ireland presented my case to the London MDT and I was accepted for AHSCT in UCLH and was transplanted in March last year. My EDSS has gone from 6.5 to 2.0 and I had no serious side effects from chemotherapy, just wish I'd had HSCT sooner!
There’s something odd about neurology / MSology. Too many MS therapies (many of which are only modestly effective) / too much focus on relapses / too much risk aversion (by neuros and patients). MSers want one thing - not to become disabled / more disabled. But it’s the Wild West in neurology - MSers’ choice of therapies and the treatment strategy (IRT or escalation) depends on the neuro they end up seeing. MS patients deserve better than the current haphazard approach. Neurology could learn so much from oncology (overall: way more expertise (they know their diseases), more effective therapies, better patient outcomes). Neurology / MSology needs shaking up.
Unfortunately this post doesn't surprise me. I attended a newly diagnosed meeting at my local MS centre on Saturday. Alemtuzumab received barely a mention in the treatment talk and was rather sidelined as "the one we rarely use now". HSCT had even less air time.
Later in the day I attempted to encourage those present to do their own research and to build rationale if they wanted to go down a different route from what their neuro was proposing, but why should this burden be placed at the door of someone who has only just received an MS diagnosis, is likely to be overwhelmed/distressed, and who may have little-to-no knowledge of what options may be most suitable for them?
It's tough. I appreciate there is limited time for a neuro to get their message across to MSers, but when personal/centre preferences of the HCPs are shared with patients ahead of compelling evidence (such as what's included in this article) of the DMTs which may lead to best long term outcomes, its little wonder that the numbers on alemtuzumab or hsct are lower than the benefits of those treatments would suggest.
I fought for alemtuzumab for two years but couldn't get it done. They keep me on first line medication, resulting in a very big relapse in 2021 with over 40 lesions (I already had a lot) in my head, a large oval lesion in my brain stem and 30 more lesions in my spinal cord where several at the conus medulla
I have regressed tremendously and even after the relapse they keep me on the same medication
These results are positive Prof G. Is Lemtrada licensed for secondary progressive MS? Are there positive results if the MS is more smouldering than active? Interesting article as always, thank you.
I hear you Gavin, as a person with MS I cannot understand why high efficacy DMTs or HSCT is not offered at diagnosis. The escalation model is flawed as every time the decision is made to escalate is more brain and spinal lesions/damage. As I said to my neurologist ‘you can’t undo brain damage’ which was met with a long pause before he agreed to put me on a more effective DMT (Natalizumab). Alemtuzumab and HSCT are not available in NZ. However if I was in the UK they wouldn’t have put me on Natalizumab as my MS wouldn’t have been active enough!! Thank you for speaking out it is appreciated! Jane
Had both, but way, way too late. Damage was so done. Agree with the brilliant Prof. G. And furthermore, #EBVcausesMS. So, yeah, where are the antivirals? I miss my beautiful life.
Prof. G, in full transparency shouldn’t we also include the 10 year results for cladribine in the conversation. I am always very surprised when you are discussing IRTs and you do not (for some reason) include Clad.
Doctor G I also thought a HSC T and lemtrada will be the answer however they are not for progressive MS as doctor Bert clearly States adamantly in his speeches HSC T is not for progressive MSi am still progressing having done mavin clad And now I amRequesting kesimpta from my neuro the only med for progressive ms
My neuro doesn't like lemtrada due to the auto immune side effects. Failed tysabri because of increasingly severe infusion reactions after 9 years. Currently on ocrevus but again infusion reactions are severe and feel unwell at least half of the infusion cycle plus may have relapsed. Currently discussing either cladribine (but then he is worried that it leaves no further options) or aHSCT if I qualify for 2 failed MAB even though diagnosed 22 years.
I had alemtuzemab in ‘15 and ‘16 (diagnosed in 2008 but first symptoms in 2002). Since then have had nine stable MRI, no increase in EDSS and no brain atrophy. Wish it had been available when I was first diagnosed. It has to be wn option for people with MS
Mar 21, 2023·edited Mar 21, 2023Liked by Gavin Giovannoni
I’m 43, have had MS since 2013, but went undiagnosed & untreated until 2018 when a series of aggressive relapses had me put directly onto Natulizumab. I’ve had an excellent response since then, JC negative, no relapses, scans stable and my disability slowly improving (EDSS 5).
Having had MS for 10 years would alemtuzumab likely still have the potential to be effective at halting progression?
This is really interesting as I asked about Lemtrada as my first DMT and was told but a few neurologists that due to the side affects of Lemtrada is not usually offered anymore. Ocrevus/ Kesimpta and Mavenclad were pushed forward to me. I have now started Mavenclad and am doing okay but have always wondered what it would have been like to begin Lemtrada and possibly not need any further treatments in the future.
I also was not told about AHSCT, could you explain who can qualify and how for this treatment on the NHS?
Well what can an MS er say whose lived with MS since 2005 ? What has got me through is being my own advocate (at most stages) and fighting for me. Prof G you say you’re disheartened and quite rightly so. Imagine what a person with MS is thinking 💭
“Let down’l are two words that come to mind. All I can say is thank God. I had HSCT albeit at a later stage of my illness. Next month I’ll be 7 years post HSCT Well that has to be a win-win situation as since then I’ve had no MS drugs, infusions, injections, or medication for MS specifically Actually, I’ve saved the NHS money - MS Wise. For HSCT, I am truly grateful. ❤️
Thank you prof G for your newsletter. I think many doctors dont know a lot about effective treatments. Still big number of doctors cant even correctly diagnose MS. It would be great to read more about molecular mimicry of EBV. Please share your thoughts about future possibilities of MS treatments. If you could share your thoughts about PAS 002 vaccine for instance it would be also great. Once again thank you for everything.
In dec 2017 I was diagnosed with (agressive) MS. In my first appointment after the diagnosis I had to make a decision on first line medication. I was just told I had MS, so I didn't know much of MS: not was it really was, not what the impact would be, not about medication and their impact on my life. I told the nurse about this problem she faced me with and asked her for a new appointment with my neurologist.
In my appointment with the neurologist she went back to the day I was diagnosed, because she had realised that I had heard nothing after she told me 'you have MS'. We looked at the MRI's again and she gave me more information about MS: what is was, what medication there had been developed and the development there had been over the years to slow down MS.
After all this information I said to her: I have to make a decision about medication, but I'm not a doctor. If you were me, what would you choose and why? She said to me: in your case I would choose alemtuzumab, second line medication. The best thing is to hit the MS hard, because that gives the highest chance of keeping your high standard of functioning. I said to her: I have to make a decission about first line medication, so what do I choose then...?
She made the decission, with me, to step out the protocol, because she wanted to make the best decision for me at that point of my life: alemtuzumab.
It's 5 years now: there is no activity on MRI's, so my MS is stable, but my fysica and cognitive functioning is not (although it could have been a lot worse).
This made me thinking: is my MS smouldering or can it be the chemo (chemobrain), or maybe both? It's not the the answer will change the outcome, but it can maybe take away uncertainty. It's not the MS itself, but the uncertainty of MS that makes life so hard...
I had Alemtuzumab in 2016 and 2017, was relapsing frequently after round two and needed a full thyroidectomy in 2019. Commenced Ocrevus in late 2020, relapsing again frequently. My excellent neurologist here in Ireland presented my case to the London MDT and I was accepted for AHSCT in UCLH and was transplanted in March last year. My EDSS has gone from 6.5 to 2.0 and I had no serious side effects from chemotherapy, just wish I'd had HSCT sooner!
There’s something odd about neurology / MSology. Too many MS therapies (many of which are only modestly effective) / too much focus on relapses / too much risk aversion (by neuros and patients). MSers want one thing - not to become disabled / more disabled. But it’s the Wild West in neurology - MSers’ choice of therapies and the treatment strategy (IRT or escalation) depends on the neuro they end up seeing. MS patients deserve better than the current haphazard approach. Neurology could learn so much from oncology (overall: way more expertise (they know their diseases), more effective therapies, better patient outcomes). Neurology / MSology needs shaking up.
Unfortunately this post doesn't surprise me. I attended a newly diagnosed meeting at my local MS centre on Saturday. Alemtuzumab received barely a mention in the treatment talk and was rather sidelined as "the one we rarely use now". HSCT had even less air time.
Later in the day I attempted to encourage those present to do their own research and to build rationale if they wanted to go down a different route from what their neuro was proposing, but why should this burden be placed at the door of someone who has only just received an MS diagnosis, is likely to be overwhelmed/distressed, and who may have little-to-no knowledge of what options may be most suitable for them?
It's tough. I appreciate there is limited time for a neuro to get their message across to MSers, but when personal/centre preferences of the HCPs are shared with patients ahead of compelling evidence (such as what's included in this article) of the DMTs which may lead to best long term outcomes, its little wonder that the numbers on alemtuzumab or hsct are lower than the benefits of those treatments would suggest.
I fought for alemtuzumab for two years but couldn't get it done. They keep me on first line medication, resulting in a very big relapse in 2021 with over 40 lesions (I already had a lot) in my head, a large oval lesion in my brain stem and 30 more lesions in my spinal cord where several at the conus medulla
I have regressed tremendously and even after the relapse they keep me on the same medication
I've given up, no more energy to fight it
These results are positive Prof G. Is Lemtrada licensed for secondary progressive MS? Are there positive results if the MS is more smouldering than active? Interesting article as always, thank you.
I hear you Gavin, as a person with MS I cannot understand why high efficacy DMTs or HSCT is not offered at diagnosis. The escalation model is flawed as every time the decision is made to escalate is more brain and spinal lesions/damage. As I said to my neurologist ‘you can’t undo brain damage’ which was met with a long pause before he agreed to put me on a more effective DMT (Natalizumab). Alemtuzumab and HSCT are not available in NZ. However if I was in the UK they wouldn’t have put me on Natalizumab as my MS wouldn’t have been active enough!! Thank you for speaking out it is appreciated! Jane
Had both, but way, way too late. Damage was so done. Agree with the brilliant Prof. G. And furthermore, #EBVcausesMS. So, yeah, where are the antivirals? I miss my beautiful life.
Prof. G, in full transparency shouldn’t we also include the 10 year results for cladribine in the conversation. I am always very surprised when you are discussing IRTs and you do not (for some reason) include Clad.
https://vjneurology.com/video/jv9lme8h6yy-classic-ms-8-10-year-follow-up-of-oracle-trial-shows-long-term-efficacy-of-cladribine-for-ms/
Doctor G I also thought a HSC T and lemtrada will be the answer however they are not for progressive MS as doctor Bert clearly States adamantly in his speeches HSC T is not for progressive MSi am still progressing having done mavin clad And now I amRequesting kesimpta from my neuro the only med for progressive ms
Drs know this
My neuro doesn't like lemtrada due to the auto immune side effects. Failed tysabri because of increasingly severe infusion reactions after 9 years. Currently on ocrevus but again infusion reactions are severe and feel unwell at least half of the infusion cycle plus may have relapsed. Currently discussing either cladribine (but then he is worried that it leaves no further options) or aHSCT if I qualify for 2 failed MAB even though diagnosed 22 years.
I had alemtuzemab in ‘15 and ‘16 (diagnosed in 2008 but first symptoms in 2002). Since then have had nine stable MRI, no increase in EDSS and no brain atrophy. Wish it had been available when I was first diagnosed. It has to be wn option for people with MS
I’m 43, have had MS since 2013, but went undiagnosed & untreated until 2018 when a series of aggressive relapses had me put directly onto Natulizumab. I’ve had an excellent response since then, JC negative, no relapses, scans stable and my disability slowly improving (EDSS 5).
Having had MS for 10 years would alemtuzumab likely still have the potential to be effective at halting progression?
Thanks for any thoughts.
Hello Prof G!
This is really interesting as I asked about Lemtrada as my first DMT and was told but a few neurologists that due to the side affects of Lemtrada is not usually offered anymore. Ocrevus/ Kesimpta and Mavenclad were pushed forward to me. I have now started Mavenclad and am doing okay but have always wondered what it would have been like to begin Lemtrada and possibly not need any further treatments in the future.
I also was not told about AHSCT, could you explain who can qualify and how for this treatment on the NHS?
Best wishes
Fatma
Well what can an MS er say whose lived with MS since 2005 ? What has got me through is being my own advocate (at most stages) and fighting for me. Prof G you say you’re disheartened and quite rightly so. Imagine what a person with MS is thinking 💭
“Let down’l are two words that come to mind. All I can say is thank God. I had HSCT albeit at a later stage of my illness. Next month I’ll be 7 years post HSCT Well that has to be a win-win situation as since then I’ve had no MS drugs, infusions, injections, or medication for MS specifically Actually, I’ve saved the NHS money - MS Wise. For HSCT, I am truly grateful. ❤️
Thank you prof G for your newsletter. I think many doctors dont know a lot about effective treatments. Still big number of doctors cant even correctly diagnose MS. It would be great to read more about molecular mimicry of EBV. Please share your thoughts about future possibilities of MS treatments. If you could share your thoughts about PAS 002 vaccine for instance it would be also great. Once again thank you for everything.
In dec 2017 I was diagnosed with (agressive) MS. In my first appointment after the diagnosis I had to make a decision on first line medication. I was just told I had MS, so I didn't know much of MS: not was it really was, not what the impact would be, not about medication and their impact on my life. I told the nurse about this problem she faced me with and asked her for a new appointment with my neurologist.
In my appointment with the neurologist she went back to the day I was diagnosed, because she had realised that I had heard nothing after she told me 'you have MS'. We looked at the MRI's again and she gave me more information about MS: what is was, what medication there had been developed and the development there had been over the years to slow down MS.
After all this information I said to her: I have to make a decision about medication, but I'm not a doctor. If you were me, what would you choose and why? She said to me: in your case I would choose alemtuzumab, second line medication. The best thing is to hit the MS hard, because that gives the highest chance of keeping your high standard of functioning. I said to her: I have to make a decission about first line medication, so what do I choose then...?
She made the decission, with me, to step out the protocol, because she wanted to make the best decision for me at that point of my life: alemtuzumab.
It's 5 years now: there is no activity on MRI's, so my MS is stable, but my fysica and cognitive functioning is not (although it could have been a lot worse).
This made me thinking: is my MS smouldering or can it be the chemo (chemobrain), or maybe both? It's not the the answer will change the outcome, but it can maybe take away uncertainty. It's not the MS itself, but the uncertainty of MS that makes life so hard...