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.
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.
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.
Good luck! I'm really sorry to bother you, but where is your daughter having HSCT? I thought private HSCT in the UK had the same criteria as NHS? I don't meet the NHS criteria and I'm not well enough to try go abroad for HSCT, but if I could do it privately in the UK then maybe.
(Sorry, posted this in the wrong place 🤕) 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!
I’m sorry, I couldn’t say with confidence what the difference is. As you say things do change all the time. My daughter saw Professor Richard Nicholas initially but as I mentioned, her case still had to be presented at the MDT for approval. Like you, she wasn’t eligible for Star MS due to having had Ocrevus already.
Thank you so much for answering! I've never seen Prof Nicholas, I'll keep him in mind. Private doctors can sometimes move one back to the NHS for the actual treatment, but I'm sure you asked about that. I really hope all goes well for your daughter, she's very lucky to have your support 🍀
Dear Lehann, do you by any chance know where I could apply to get funding to pay for treatment for my child? We don’t have any funds at all to go private sadly. Our case is similar to yours.
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.
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.
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?
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.
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!
Dear Unnameable, I am the mother of a young daughter, just diagnosed. We can’t fund private treatment, how in your opinion might we get to the people that have helped you without funds?
Hi again, as before please don’t reply on my info as things could have changed, I’m like you, just a mum, but we had to wait until our daughter turned 18 before HSCT could be considered. Although I do know the Star-MS trial minimum age is 16.
Dear Jane: First do a lot of research online. Work out what treatment your daughter wants to have, and try get it from your local neurologist. If she can't get it, find out why. If it's that your local hospital doesn't do it, then (if you can manage it) move to somewhere that does. (Assuming You're British, it's different if you're not).
Honestly, I moved to London (one of the boroughs that are in the catchment area for Royal London Hospital), so I could be under Prof G on the NHS. That meant I could have Alemtuzumab, which wasn't available where I'm from. I don't fit the criteria for HSCT, so couldn't get that.
You can see a private neurologist for between £200 and £300 in my personal experience; some will see you without a referral. You can also ask your local neurologist for a second opinion on the NHS, and possibly be referred out-of-area (that's how I saw Prof G originally). Whether any of that will help, depends on what you want and why you can't get it (type of MS, DMTs already tried, MRI activity, etc). (I don't think Prof G sees private patients, but plenty of neurologists do.)
Take a look at the STAR-MS trial and see if your daughter fits the criteria (I didn't). There are other trials here: https://clinicaltrials.gov
Read the NICE guidelines and whatever other guidelines your local neurologist/hospital/Clinical Commisioning Group follow.
In my personal experience, I've paid to see private doctors and been told that the private criteria for DMTs is the same as on the NHS. However, sometimes private doctors do find MRI scan activity that the NHS didn't find, which sometimes makes one eligible for more treatments, and even in the same area NHS neurologists sometimes offer treatments others don't 🤷 But just take it one step at a time, and good luck!
Dear Unnameable, thanks so much for this. Yes, we, like you, are within the catchment area, she is not eligible for the STAR-MS trial due to starting on a high efficacy DMT not long ago. We are under a good doctor but she is simply not eligible for HSCT/Alemtuzumab within The NHS. Therefore she is now effectively living with a time bomb, we are terrified, we have nowhere to turn and nowhere to go. And we have no money.
I'm really sorry you're finding this so hard, and your daughter is lucky to have you 💛
The NHS criteria for DMT's sucks. But criteria alters all the time, as does available treatment, and trials to apply for. Everything changes.
It still isn't really known whether Alemtuzumab or HSCT is a better treatment. I'd reccomend doing your own research about which of them is even the best treatment for your daughter or whether it's a different DMT, it might even be what she's on now. Everyone's situation is different.
In my personal experience, there's nothing one can do about the criteria; money doesn't make a difference. Personally, the only way I could get HSCT is if I crowdfunded and went abroad. That's too scary for me. I diagnosed my own MS, but I'm not enough of an expert to know if HSCT is worth the expense and risk of having it in Russia. I may still get HSCT on the NHS, or I may not get any more treatment at all, it depends on future MRI scans, and I just have to be open minded about that. I wish I had a better answer for you 🤕
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.
Re: "1) Should those of us in the early stages of RRMS who have been given Ocrevus be concerned about its efficacy long term?"
Yes, because it has a relative small impact on smouldering MS. The brain volume data with anti-CD20 therapies is not nearly as good as the data from alemtuzumab or AHSCT.
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.
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.
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.
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.
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?
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.
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.
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.
Good luck! I'm really sorry to bother you, but where is your daughter having HSCT? I thought private HSCT in the UK had the same criteria as NHS? I don't meet the NHS criteria and I'm not well enough to try go abroad for HSCT, but if I could do it privately in the UK then maybe.
She’s having treatment at London Bridge Hospital. She still had to be approved by MDT.
(Sorry, posted this in the wrong place 🤕) 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!
I’m sorry, I couldn’t say with confidence what the difference is. As you say things do change all the time. My daughter saw Professor Richard Nicholas initially but as I mentioned, her case still had to be presented at the MDT for approval. Like you, she wasn’t eligible for Star MS due to having had Ocrevus already.
Don’t give up hope!
Thank you so much for answering! I've never seen Prof Nicholas, I'll keep him in mind. Private doctors can sometimes move one back to the NHS for the actual treatment, but I'm sure you asked about that. I really hope all goes well for your daughter, she's very lucky to have your support 🍀
Dear Lehann, do you by any chance know where I could apply to get funding to pay for treatment for my child? We don’t have any funds at all to go private sadly. Our case is similar to yours.
Unfortunately I’m not aware of any funding avenues except for NHS. That’s not to say there aren’t any so please don’t give up!
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.
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.
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?
My point was that I feel we need to invest more resources into stem cell therapies and not stop at AHSCT
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.
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!
Dear Unnameable, I am the mother of a young daughter, just diagnosed. We can’t fund private treatment, how in your opinion might we get to the people that have helped you without funds?
Hi again, as before please don’t reply on my info as things could have changed, I’m like you, just a mum, but we had to wait until our daughter turned 18 before HSCT could be considered. Although I do know the Star-MS trial minimum age is 16.
Ok. Thank you.
Dear Jane: First do a lot of research online. Work out what treatment your daughter wants to have, and try get it from your local neurologist. If she can't get it, find out why. If it's that your local hospital doesn't do it, then (if you can manage it) move to somewhere that does. (Assuming You're British, it's different if you're not).
Honestly, I moved to London (one of the boroughs that are in the catchment area for Royal London Hospital), so I could be under Prof G on the NHS. That meant I could have Alemtuzumab, which wasn't available where I'm from. I don't fit the criteria for HSCT, so couldn't get that.
You can see a private neurologist for between £200 and £300 in my personal experience; some will see you without a referral. You can also ask your local neurologist for a second opinion on the NHS, and possibly be referred out-of-area (that's how I saw Prof G originally). Whether any of that will help, depends on what you want and why you can't get it (type of MS, DMTs already tried, MRI activity, etc). (I don't think Prof G sees private patients, but plenty of neurologists do.)
Take a look at the STAR-MS trial and see if your daughter fits the criteria (I didn't). There are other trials here: https://clinicaltrials.gov
Read the NICE guidelines and whatever other guidelines your local neurologist/hospital/Clinical Commisioning Group follow.
In my personal experience, I've paid to see private doctors and been told that the private criteria for DMTs is the same as on the NHS. However, sometimes private doctors do find MRI scan activity that the NHS didn't find, which sometimes makes one eligible for more treatments, and even in the same area NHS neurologists sometimes offer treatments others don't 🤷 But just take it one step at a time, and good luck!
Dear Unnameable, thanks so much for this. Yes, we, like you, are within the catchment area, she is not eligible for the STAR-MS trial due to starting on a high efficacy DMT not long ago. We are under a good doctor but she is simply not eligible for HSCT/Alemtuzumab within The NHS. Therefore she is now effectively living with a time bomb, we are terrified, we have nowhere to turn and nowhere to go. And we have no money.
I'm really sorry you're finding this so hard, and your daughter is lucky to have you 💛
The NHS criteria for DMT's sucks. But criteria alters all the time, as does available treatment, and trials to apply for. Everything changes.
It still isn't really known whether Alemtuzumab or HSCT is a better treatment. I'd reccomend doing your own research about which of them is even the best treatment for your daughter or whether it's a different DMT, it might even be what she's on now. Everyone's situation is different.
In my personal experience, there's nothing one can do about the criteria; money doesn't make a difference. Personally, the only way I could get HSCT is if I crowdfunded and went abroad. That's too scary for me. I diagnosed my own MS, but I'm not enough of an expert to know if HSCT is worth the expense and risk of having it in Russia. I may still get HSCT on the NHS, or I may not get any more treatment at all, it depends on future MRI scans, and I just have to be open minded about that. I wish I had a better answer for you 🤕
Thank you for your thoughts and help. Life can be very tough for so many of us.
Indeed it can 🤕 Good luck to you and your daughter! 🍀
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
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!
Re: "1) Should those of us in the early stages of RRMS who have been given Ocrevus be concerned about its efficacy long term?"
Yes, because it has a relative small impact on smouldering MS. The brain volume data with anti-CD20 therapies is not nearly as good as the data from alemtuzumab or AHSCT.
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.
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.
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.
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.
Re: "Professor Gianvito Martino, neural stem cell therapy"
All they have shown that the procedure is safe. The data on efficacy is very poor. I am not sure if this will go much further.
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?