What do you call a neurologist who states if they had MS they would want to be treated with alemtuzumab or AHSCT, but don't actually use alemtuzumab or AHSCT in their MS clinical practice?
When my child with MS first moved into adult neurology at a large MS centre I asked if they ever referred patients for AHSCT. The reply was ‘only the odd one that has whinged at us so much we had to’.
If pwMS who are suffering and/or fearful of the future and are advocating for themselves for the treatment they feel is best suited risk wise to their experience are seen as ‘whinging’ then I think it says it all really.
There isn’t mutual respect and honesty. It’s dehumanising and shows a total lack of compassion or empathy. That is why neurologists would choose differently for themselves to what they offer their patients. They don’t see their patients as intelligent people capable of making decisions about their own lived experience and so they only offer the path easiest and less risky for the clinician.
Whenever we have tried to talk about the future with this team we get platitudes about doing well now (as might be expected in the first few years of MS and entirely missing the point).
Thank goodness for a few lone voices like your who are prepared to be noisy enough for both clinicians and patients to hear. I hope it filters through and others are willing to see pwMS as worthy of transparency and honest conversation.
I am an Italian neurologist with more than 30 years experience in MS, including AHSCT, who had the chance to speak with Gavin of AHSCT and the role of neurologists
I take advantage of this substack to share my thoughts:
1) Neurologist MUST explain and illustrate at the pwMS all the treatment options, including AHSCT
2) The evaluation and the weight of the risk is personal, everyone weights risk and benefits in a different way. Also the neurologist weight risk and benefit of the pwMS they have in front, but from his personal point of view; his personal evaluation can not replace that of the patient.
3) Neurologist do not have the right to take a decision instead of the patient, in particular for treatment with risk of death; neurologists can not choose “a priori” the patient who will be offered AHSCT or Lemtrada. If a patient ask me “doctor, what would you do if you were in my shoes?” I explain my choice, but I add, “if you ask another neurologist it is very likely that you will receive a different answer, as the evaluation of risks and benefits is very personal”
4) Legal problems and responsibility: before AHSCT a detailed flow-chart must be followed, with meetings among HCPs and patient (and relatives), written informed consent, answers to all the questions. This procedure takes time, a lot of time, but it is time-saving considering that the management of post-AHSCT is, in the great majority of cases, very easy for many years.
5) To present AHSCT to pwMS is not only a respectful approach, but also prevents the future accusation of wrong information to pwMS
6) Cure MS: the C-word can be used, with caution. We need an up-date of the 2013 working definition of cure of MS
7) Progression of disability: the pwMS must be informed, from the time of communication of the diagnosis, that he/she has a RISK of progression.
The patient needs an accurate risk-benefit comparison between AHSCT and other treatments, but I don't know if that's possible at the moment.
How much do neurologists know about the benefits of AHSCT vs the benefits of something like Ocrelizumab?
It's not helpful for a neurologist to just mention that 'AHSCT is an option if you're interested'.
This happened with my daughter, age 28.
What the patient wants to know is whether AHSCT will help her after 17 years of MS and 12 years of nothing new on MRIs (because of 10 years on rituximab)
Will AHSCT prevent any significant progression for the next 15 years? Or at least, what are the chances that it will work for her and prevent future progression?
Excellent question . It often feels like once you are on dmt , ocrevus for me , where there have been no new lesions you are passed to the team that deals with that drug and no change or discussion ever happens about the future progression
It's also possible to be accurate about the uncertainty. It's really hard, but not knowing everything for sure is not a good reason to hide information.
Rachael, it was easy for me to think my disease would take a relatively mild course until I realized too late it didn’t. My long term neurologist was complicit in this. Even now, I have heard “well, you’re not in a wheelchair.” Huh?
Aww, thanks. As a patient, I want to say, keep up the good work. It sounds like many neurologists are... pretty paternalistic. That didn't work well with me, and I am glad I found someone who works much more like you describe.
Thank you for your insight. I believe that the patient has a right to know the possible prognosis of this disease. It is quite common to believe this disease will take a relatively benign course. (Your point #7) They realize far too late it did not!
I agree wholeheartedly. Watching my sister deteriorate and die from MS in her forties has meant I've been terrified of the disease all my adult life.
Eventually pushed and paid for MRIs to investigate my symptoms. I was told the results were 'reassuring' despite there being a couple of 'spots'. I thought it meant I did not have MS.
Nine years later I developed transverse myelitis and then got my full MS diagnosis thanks to new neurologists who agreed to an LP.
I begged for Lemtrada and was inconsolable when my follow up MRI didn't qualify me for it.
Instead I got Tecfidera and seven years in I am supposedly stable although it doesn't feel like it.
I know you aren't talking about patients like me, and I know my neurologist would have given me Lem if he could, but my heart breaks for those who do qualify and don't get it.
My sister had only an early trial of beta interferon on offer and couldn't inject herself. It does seem criminal to me that treatments now do exist and yet some patients are having multiple relapses a year but aren't beinggiven accurate information, monitoring and the full choice of treatment.
Sorry this is so long, I feel so passionately that this paternalistic attitude has to go and patients' voices need to be heard. Thank you for all you do.
In the 30 years I have had diagnosed MS, no one has ever described to my face what might happen as MS progresses. Somehow, I am assumed to have greater knowledge. Physical therapists are more inclined to give you a free opinion (that you didn't ask for) but still make a mess of it. The irony is that in the last 10 years I have been regularly asked "what MS drug would you like to take?" whilst the questioner remains unprepared to offer any insight into any of them. Rather than feel like the patient, I usually feel like a visitor to an asylum full of ego maniacs. The only time I feel relieved is when I get out the door.
This is so true. Bewildered patients end up asking strangers on Internet forums about the treatment options they've been offered because they don't get any insight from their medical professionals. Then of course they get a lot of 'dont take the poison/don't trust big pharma' responses so many end up refusing everything. Wouldn't it be better if we could have actual opinions from our medical teams, instead we're expected to become neurologists overnight.
Not only paternalistic, but some of the old guys are also misogynists, I think. When I was diagnosed I could almost feel the old neurologist pat me on the head and almost hear him say "don't worry little lady, you might never have another relapse". He actually did say the last part of this. And I was a 44 year old science teacher, not some clueless teenager that needed reassuring. And then everyone said don't go on the internet because it will scare you. What rubbish. It's because I eventually did, that I found out how poor my care was. I was offered no treatment, and was told when I asked that I'd probably never have another MRI, unless I had a relapse. I was made to feel anything I reported was not MS. So I changed hospitals, and eventually got another MRI (with contrast, which was delayed due the cancer diagnosis) I had had a mild relapse a few months before, and the MRI showed my disease was active, which didn't surprise me but reassured me that I knew my own disease better than the MS nurse! And so was offered Tysabri, as well as other DMTs. When I asked my new neurologist why wouldn't I want the best? She was pleased that I wanted that, and said that's what she'd recommend to a family member. If I hadn't worked out that I didn't have to put up with poor care I would no doubt be much more disabled than I am now. I think it's shocking, with all the DMTs now available that all pwms aren't offered one straight away, that you have to get worse before they'll use them.
Yes, but not just neurologists. (Lawyer here. I don’t tell them.) It can be incredibly paternalistic. You can be labelled as an “uncooperative patient” for asking questions!
My ex-neurologist (who flatly refuses to use alemtuzumab or AHSCT) uses unrepeatable language when describing AHSCT to patients who ask about it.
Thanks to your work Gavin I knew my prognosis was fairly poor by the time I got to my post-diagnosis DMT appointment; when I tried to raise this at the appointment I was told I was ‘very difficult to deal with’ if I didn’t trust him, and that my prognosis was very good (with brain atrophy, black holes, spinal cord lesions, late-onset MS, and back-to-back relapses)! Any questions were quickly shutdown. I still find it hard to believe that at a time when I needed support I was treated as an inconvenience and with a complete lack of any compassion. The only time this neuro showed any interest or willingness to do what I wanted was when I told him I was moving to a different neuro, quite extraordinary, I thought he would be glad to be rid of me, one less patient to deal with!
So far AHSCT has been great for me, seems to be holding MS back in a way that tysabri wasn't, for now anyway; and being under a team who are so helpful makes life with MS less stressful.
I’m sorry to say this, but neurologists / MSologists are the Joe Biden’s of the medical profession - slow and confused. Slow to take up new treatments and confused about what MS is / eventually does. Too many patients are told it’s an auto-immune disease and walk away thinking they’ve got something akin to vitiligo or eczema - they need to be told that MS leads to neurodegeration and potentially severe disability. Neuros should be strongly guiding their patients to the most highly effective treatments not taking the easy option of a mildly effective pill or injectable. Many patients also think they are lucky “I might end up with a mild case”. The neuro needs to explain that even mild cases eventually become progressive and severely disabling.
MS research is in the doldrums - good stuff is always 10-15 years away. We need some risk takers - willing to try something different. If I was a neuro and had a neuro colleague with MS I’d try HAART on them (with their consent). The current trial system (together with the influence of pharma) means that eureka / breakthrough events are never going to happen. Slow Joe neurologists / MSologists aren’t going to deliver the Black Swan event. I loved this story on the BBC - oncologist (good doctors) colleagues coming up with new ways to treat a nasty brain cancer which one of them has. Good luck to them. The willingness to try something different and new should be applauded. I’d like oncologists and immunologists to make a takeover bid for MS. Neuros have tried for 100+ years, but the cane makers and wheelchair makers are still in business.
I was reading these compelling stories of experiences with neurologists and then come across your unfounded statement. President Biden is cognitively sound, physically fit (so much more than the ex-pres who exhibits strong traits of dementia and has a family history of Alzheimer’s) and I would hope you tune in somewhere else other than where you are being fed lies and more lies to find your US political news. Inserting political views into this substack is unwarranted. I can only hope all my faculties will be as sharp as President Biden at the age of 80+.
Thank you! It’s ridiculous that on such a forum about a disabling disease that we live with that this is what we get! Dr. Giovanni please encourage relevant discussion on these issues not political conspiracies about American politics.
First of all, bringing Joe Biden’s age into this discussion is juvenile & inappropriate. Conspiracy theories have no place in this discussion either. As a pwMS, I want facts and information not politics & innuendo. It’s feeding into the ableist narrative regarding health & well-being. It’s absolutely ridiculous!
Ian even more inappropriate! You have no business speaking to me in this manner! How dare you ! Prof G. did you actually like his response? This is absolutely ridiculous. If you have no interest in US politics, why comment about our President? This should not be allowed in this forum!
It's easy to SAY I would like the strongest treatment for myself. But, were the situation to arise, it's not that easy to actually take the jump into a traumatic disruptive and potentially fatal treatment, esp when there's a possibility that you may be one of the lucky ones.
I guess many find it hard to nudge someone or push someone into such a treatment.
They don’t need to be pushed or nudged. They just need to have the facts as they stand about what’s available and supported to come to a conclusion that is right for them. Risk taking is very individual but if the medical team are risk averse on behalf of the patient then the conversation is over before it’s started.
I think it is very easy to 'jump' when you consider the consequences of having MS and the likelihood of being one of the lucky ones having a benign course, the data is not in our favour.
As a person age 60 living with MS, AHSCT isn’t even an option for me, even if I had the money! Insurance does not cover this in the US. Ocrevus has stopped new lesions, although I did just have an horrible flare with optic neuritis that I was hospitalized for.
Treat them doc don’t cure them is the game plan. At 62 and desperate I took my retirement money and went to Mexico for AHSCT. Best decision I ever made.
I echoed your comment about neurologists being paternalistic for years when I first found out about ahsct. My first neuro wouldn't even explain what it was and said simply "its highly risky and its not appropriate for you".
Why in the ever living f*** are you deciding what the appropriate risk profile is for MY treatment?
That same neuro had me on Copaxone for 2 years which did nothing but allow me to lose brain mass and accumulate damage.
AHSCT saved my life. And i was lucky enough to somehow find a neurologist on a blind second opinion request who actually supported my decision to go out and do it in another country.
In my country, Romania, alemtuzumab can be administered only after failing two other approved dmt. My neurologist is not mindless or careless: after several months of Tecfidera, as my MRI continued to show active lesions, she adviced me to switch to ofatumumab (my choice). as a result, now (6 months later) almost all lesions are inactive. but I feel worse; does that mean that ofatumumab fails me? hmm.
as VK says above, it's not that easy to actually take the jump. to put it simpler, to what extent Lemtrada would cure better what is already cured bonus a pletora of side-effects with no impact whatsoever on the symptoms?
Interesting thoughts. I'm a pwMS only diagnosed 7 months ago complicated by the fact not only am I a doctor (emergency medicine) but previously trained in neurorehabilitation treating the most severe secondary/primary progressive MS patients with no treatment options except managing the complications of the disease. I have such a skewed view on the condition maybe a unrealistic one. What saddens me is not once have my team discussed the potential decline I may have in my function but when I discussed AHSCT it was very much pushed aside & made out to be a 'last ditch attempt' at managing the condition which really makes no logical sense. All I remember is the patronising comments of 'if there was a time to have MS now is the time'! I honestly could not wish anyone to be diagnosed with such an unpredictable & potentially debilitating condition but here we are! I'll just continue to keep my fingers crossed or hedge all my bets on being the one who has a benign course...
I hope you of all people have the experience and knowledge to not hope for a benign course but to fight your doctors to get the most highly effective treatment for your disease. Get the best treatment now for your future self.
I forget which post it was from The MS Blog and it was a few months back, but the gist was getting people enrolled in a trial with a heavy duty DMT, treated earlier within 2 weeks or something, “saving brain” Something like that and I probably combined two or more posts in my memory. Discrepancies in education as one of the factors associated with delay, was discussed. Given that topic, and what I read by Ms Nic M above, I guess I don’t need to say anything else, but sure am tempted. "Fingers Crossed and Hedge All My Bets" for a benign course. Do you have a next step planned should the "Hope DMT" not work?
My first neurologist was very open and explained that asking for Kesimpta would lead to delays as it involved a massive amount of paper work to approve the costs. I found the side effects of tecifidera too much, yet could not get a decent conversation about swiching DMDs from the team, so switched to a teaching hospital with an distinct interest in MS. Kesimpta approved, home delivered and carefully monitored every 3 months, all agreed within 8 weeks. I feel in safe hands and know that the team are trying to be as flexible as they can. Yet this hospital is a long journey and I do worry about what will happen when I become more disabled. And I know this will happen and my eyesight will deterioate again. But with this knowledge comes the planning for the future which I think every patient needs. So we have moved to a flat easy access property, had larger rooms and an accessible toilet put in. I know I was lucky to find the monies to do this and there won't be holidays for a long time coming but I feel more prepared and oddly more hopeful. I have a wonderful large team of MS nurses and follow their advice rather than the social media stuff. Exercise daily, take DMTs, pace yourself, keep the brain active and enjoy life!
More on the topic of preparing for the future would be really helpful I think. It’s another area where it can be difficult to find the best solutions and can be paternalistic.
My neuro is really against Alemtuzumab. I am about to get cladribine after developing infusion reactions to tysabri and ocrevus and before that having the traditional Crab dmts. He told me that it's pretty much my last chance, there's nowhere to go after cladribine.
He did scan head and neck in the hope I had new lesions for ahsct but nothing showed up (no contrast and no spine). But then he was doubtful I would qualify because I have had MS more than 25 years.
Terrific column, Prof G, and myriad excellent comments regarding treatment options depending upon geography. Firstly, why is MS not treated as aggressively as cancer is? What jumped out at me was this: “Most neurologists and patients who have MS think they are going to have benign MS with a good prognosis. Nobody is expecting to end up disabled, unemployed, etc.” Underline, bold, italics! That would be me with my first neurologist at diagnosis in the 90s. And it seemed so for many years, particularly post cancer treatment with high doses of cyclophosphamide. MS DMD options were relatively decent in the states until money became the sole criteria. Now we are back to (see Belma’s comment) the old school meds at unaffordable “copays” depending upon one’s insurance. Eye roll. (We have “evergreen” patents for new tweaks. Interferon beta 1-a is an $800 copay; the cost is +/- $1400/mo). This situation is totally unacceptable. I have the most spendy Medicare D policy (a wholly privatized drug plan) which includes no DMDs in pill form other than siponimod. (See Rachael’s comment.) Now I smoulder in my older age, after being told I had neid and was advised to jettison DMDs and put on my red dancing shoes. 5 years later, I took a complete dive. Now, I am advised to resume interferon. Whoopee! That’s what is available to me, although I really pushed for cladribine, tecfidera or terflunamide and damn the torpedoes. But here, financially, be ready to sacrifice your first born for treatment and other necessities, including physiotherapy, home modification, the lot. But I digress. Again, I never expected to be as disabled as I am. MS is a sneaky disease indeed and one that physicians can perhaps unwittingly collude with patients in bright sided denial.
In the US, it can be difficult to find insurance that will cover "2nd line" drugs early on, even cladribine, which isn't quite as effective nor quite as scary.
Because there is no definition of "highly active MS," they can deny anything they want, and do.
It's especially frustrating, since cladribine was a generic injection and reformulated for oral tablets -- even though the generic appears to work \.
It's extremely unclear whether I will be able to access the second year of cladribine/mavenclad. I get different answers from everybody. That's making me very anxious -- but it also tells me that I was right that "maintenance DMT for 13 years with insurance shenanigans" was an absolute nonstarter for me.
Yes. It’s very difficult in the states to get what you need, depending upon insurance and your financial circumstances. I wish you the best. It’s very tired to have this disease and fight with insurance. An understatement.
When my child with MS first moved into adult neurology at a large MS centre I asked if they ever referred patients for AHSCT. The reply was ‘only the odd one that has whinged at us so much we had to’.
If pwMS who are suffering and/or fearful of the future and are advocating for themselves for the treatment they feel is best suited risk wise to their experience are seen as ‘whinging’ then I think it says it all really.
There isn’t mutual respect and honesty. It’s dehumanising and shows a total lack of compassion or empathy. That is why neurologists would choose differently for themselves to what they offer their patients. They don’t see their patients as intelligent people capable of making decisions about their own lived experience and so they only offer the path easiest and less risky for the clinician.
Whenever we have tried to talk about the future with this team we get platitudes about doing well now (as might be expected in the first few years of MS and entirely missing the point).
Thank goodness for a few lone voices like your who are prepared to be noisy enough for both clinicians and patients to hear. I hope it filters through and others are willing to see pwMS as worthy of transparency and honest conversation.
Thanks Gavin to focus on these important topics.
I am an Italian neurologist with more than 30 years experience in MS, including AHSCT, who had the chance to speak with Gavin of AHSCT and the role of neurologists
I take advantage of this substack to share my thoughts:
1) Neurologist MUST explain and illustrate at the pwMS all the treatment options, including AHSCT
2) The evaluation and the weight of the risk is personal, everyone weights risk and benefits in a different way. Also the neurologist weight risk and benefit of the pwMS they have in front, but from his personal point of view; his personal evaluation can not replace that of the patient.
3) Neurologist do not have the right to take a decision instead of the patient, in particular for treatment with risk of death; neurologists can not choose “a priori” the patient who will be offered AHSCT or Lemtrada. If a patient ask me “doctor, what would you do if you were in my shoes?” I explain my choice, but I add, “if you ask another neurologist it is very likely that you will receive a different answer, as the evaluation of risks and benefits is very personal”
4) Legal problems and responsibility: before AHSCT a detailed flow-chart must be followed, with meetings among HCPs and patient (and relatives), written informed consent, answers to all the questions. This procedure takes time, a lot of time, but it is time-saving considering that the management of post-AHSCT is, in the great majority of cases, very easy for many years.
5) To present AHSCT to pwMS is not only a respectful approach, but also prevents the future accusation of wrong information to pwMS
6) Cure MS: the C-word can be used, with caution. We need an up-date of the 2013 working definition of cure of MS
7) Progression of disability: the pwMS must be informed, from the time of communication of the diagnosis, that he/she has a RISK of progression.
Antonio Bertolotto
This is a perfect description of good care and what should happen ideally but the U.K. reality for many pwMS is sadly so far removed from this.
The patient needs an accurate risk-benefit comparison between AHSCT and other treatments, but I don't know if that's possible at the moment.
How much do neurologists know about the benefits of AHSCT vs the benefits of something like Ocrelizumab?
It's not helpful for a neurologist to just mention that 'AHSCT is an option if you're interested'.
This happened with my daughter, age 28.
What the patient wants to know is whether AHSCT will help her after 17 years of MS and 12 years of nothing new on MRIs (because of 10 years on rituximab)
Will AHSCT prevent any significant progression for the next 15 years? Or at least, what are the chances that it will work for her and prevent future progression?
.
Excellent question . It often feels like once you are on dmt , ocrevus for me , where there have been no new lesions you are passed to the team that deals with that drug and no change or discussion ever happens about the future progression
It's also possible to be accurate about the uncertainty. It's really hard, but not knowing everything for sure is not a good reason to hide information.
Rachael, it was easy for me to think my disease would take a relatively mild course until I realized too late it didn’t. My long term neurologist was complicit in this. Even now, I have heard “well, you’re not in a wheelchair.” Huh?
Aww, thanks. As a patient, I want to say, keep up the good work. It sounds like many neurologists are... pretty paternalistic. That didn't work well with me, and I am glad I found someone who works much more like you describe.
Thank you for your insight. I believe that the patient has a right to know the possible prognosis of this disease. It is quite common to believe this disease will take a relatively benign course. (Your point #7) They realize far too late it did not!
I agree wholeheartedly. Watching my sister deteriorate and die from MS in her forties has meant I've been terrified of the disease all my adult life.
Eventually pushed and paid for MRIs to investigate my symptoms. I was told the results were 'reassuring' despite there being a couple of 'spots'. I thought it meant I did not have MS.
Nine years later I developed transverse myelitis and then got my full MS diagnosis thanks to new neurologists who agreed to an LP.
I begged for Lemtrada and was inconsolable when my follow up MRI didn't qualify me for it.
Instead I got Tecfidera and seven years in I am supposedly stable although it doesn't feel like it.
I know you aren't talking about patients like me, and I know my neurologist would have given me Lem if he could, but my heart breaks for those who do qualify and don't get it.
My sister had only an early trial of beta interferon on offer and couldn't inject herself. It does seem criminal to me that treatments now do exist and yet some patients are having multiple relapses a year but aren't beinggiven accurate information, monitoring and the full choice of treatment.
Sorry this is so long, I feel so passionately that this paternalistic attitude has to go and patients' voices need to be heard. Thank you for all you do.
In the 30 years I have had diagnosed MS, no one has ever described to my face what might happen as MS progresses. Somehow, I am assumed to have greater knowledge. Physical therapists are more inclined to give you a free opinion (that you didn't ask for) but still make a mess of it. The irony is that in the last 10 years I have been regularly asked "what MS drug would you like to take?" whilst the questioner remains unprepared to offer any insight into any of them. Rather than feel like the patient, I usually feel like a visitor to an asylum full of ego maniacs. The only time I feel relieved is when I get out the door.
This is so true. Bewildered patients end up asking strangers on Internet forums about the treatment options they've been offered because they don't get any insight from their medical professionals. Then of course they get a lot of 'dont take the poison/don't trust big pharma' responses so many end up refusing everything. Wouldn't it be better if we could have actual opinions from our medical teams, instead we're expected to become neurologists overnight.
I would love to see a live debate between the naysayers and you on this topic.
Not only paternalistic, but some of the old guys are also misogynists, I think. When I was diagnosed I could almost feel the old neurologist pat me on the head and almost hear him say "don't worry little lady, you might never have another relapse". He actually did say the last part of this. And I was a 44 year old science teacher, not some clueless teenager that needed reassuring. And then everyone said don't go on the internet because it will scare you. What rubbish. It's because I eventually did, that I found out how poor my care was. I was offered no treatment, and was told when I asked that I'd probably never have another MRI, unless I had a relapse. I was made to feel anything I reported was not MS. So I changed hospitals, and eventually got another MRI (with contrast, which was delayed due the cancer diagnosis) I had had a mild relapse a few months before, and the MRI showed my disease was active, which didn't surprise me but reassured me that I knew my own disease better than the MS nurse! And so was offered Tysabri, as well as other DMTs. When I asked my new neurologist why wouldn't I want the best? She was pleased that I wanted that, and said that's what she'd recommend to a family member. If I hadn't worked out that I didn't have to put up with poor care I would no doubt be much more disabled than I am now. I think it's shocking, with all the DMTs now available that all pwms aren't offered one straight away, that you have to get worse before they'll use them.
Yes, but not just neurologists. (Lawyer here. I don’t tell them.) It can be incredibly paternalistic. You can be labelled as an “uncooperative patient” for asking questions!
My ex-neurologist (who flatly refuses to use alemtuzumab or AHSCT) uses unrepeatable language when describing AHSCT to patients who ask about it.
Thanks to your work Gavin I knew my prognosis was fairly poor by the time I got to my post-diagnosis DMT appointment; when I tried to raise this at the appointment I was told I was ‘very difficult to deal with’ if I didn’t trust him, and that my prognosis was very good (with brain atrophy, black holes, spinal cord lesions, late-onset MS, and back-to-back relapses)! Any questions were quickly shutdown. I still find it hard to believe that at a time when I needed support I was treated as an inconvenience and with a complete lack of any compassion. The only time this neuro showed any interest or willingness to do what I wanted was when I told him I was moving to a different neuro, quite extraordinary, I thought he would be glad to be rid of me, one less patient to deal with!
So far AHSCT has been great for me, seems to be holding MS back in a way that tysabri wasn't, for now anyway; and being under a team who are so helpful makes life with MS less stressful.
I’m sorry to say this, but neurologists / MSologists are the Joe Biden’s of the medical profession - slow and confused. Slow to take up new treatments and confused about what MS is / eventually does. Too many patients are told it’s an auto-immune disease and walk away thinking they’ve got something akin to vitiligo or eczema - they need to be told that MS leads to neurodegeration and potentially severe disability. Neuros should be strongly guiding their patients to the most highly effective treatments not taking the easy option of a mildly effective pill or injectable. Many patients also think they are lucky “I might end up with a mild case”. The neuro needs to explain that even mild cases eventually become progressive and severely disabling.
MS research is in the doldrums - good stuff is always 10-15 years away. We need some risk takers - willing to try something different. If I was a neuro and had a neuro colleague with MS I’d try HAART on them (with their consent). The current trial system (together with the influence of pharma) means that eureka / breakthrough events are never going to happen. Slow Joe neurologists / MSologists aren’t going to deliver the Black Swan event. I loved this story on the BBC - oncologist (good doctors) colleagues coming up with new ways to treat a nasty brain cancer which one of them has. Good luck to them. The willingness to try something different and new should be applauded. I’d like oncologists and immunologists to make a takeover bid for MS. Neuros have tried for 100+ years, but the cane makers and wheelchair makers are still in business.
https://www.bbc.com/news/world-australia-67870595
I was reading these compelling stories of experiences with neurologists and then come across your unfounded statement. President Biden is cognitively sound, physically fit (so much more than the ex-pres who exhibits strong traits of dementia and has a family history of Alzheimer’s) and I would hope you tune in somewhere else other than where you are being fed lies and more lies to find your US political news. Inserting political views into this substack is unwarranted. I can only hope all my faculties will be as sharp as President Biden at the age of 80+.
Thank you! It’s ridiculous that on such a forum about a disabling disease that we live with that this is what we get! Dr. Giovanni please encourage relevant discussion on these issues not political conspiracies about American politics.
Some kind of issue with "what it looks like versus what it is". Makes good points but the Biden thing makes it sad.
First of all, bringing Joe Biden’s age into this discussion is juvenile & inappropriate. Conspiracy theories have no place in this discussion either. As a pwMS, I want facts and information not politics & innuendo. It’s feeding into the ableist narrative regarding health & well-being. It’s absolutely ridiculous!
1st - I’m British and have no interest in US politics
2nd - sounds like you need a vacation. They serve lovely tequila in Egypt (or is it Mexico).
Have a good weekend
Ian even more inappropriate! You have no business speaking to me in this manner! How dare you ! Prof G. did you actually like his response? This is absolutely ridiculous. If you have no interest in US politics, why comment about our President? This should not be allowed in this forum!
It's easy to SAY I would like the strongest treatment for myself. But, were the situation to arise, it's not that easy to actually take the jump into a traumatic disruptive and potentially fatal treatment, esp when there's a possibility that you may be one of the lucky ones.
I guess many find it hard to nudge someone or push someone into such a treatment.
They don’t need to be pushed or nudged. They just need to have the facts as they stand about what’s available and supported to come to a conclusion that is right for them. Risk taking is very individual but if the medical team are risk averse on behalf of the patient then the conversation is over before it’s started.
I think it is very easy to 'jump' when you consider the consequences of having MS and the likelihood of being one of the lucky ones having a benign course, the data is not in our favour.
The decison would be easier if there was more data to predict how much more effective AHSCT would be for you and for how much longer.
As a person age 60 living with MS, AHSCT isn’t even an option for me, even if I had the money! Insurance does not cover this in the US. Ocrevus has stopped new lesions, although I did just have an horrible flare with optic neuritis that I was hospitalized for.
Treat them doc don’t cure them is the game plan. At 62 and desperate I took my retirement money and went to Mexico for AHSCT. Best decision I ever made.
I echoed your comment about neurologists being paternalistic for years when I first found out about ahsct. My first neuro wouldn't even explain what it was and said simply "its highly risky and its not appropriate for you".
Why in the ever living f*** are you deciding what the appropriate risk profile is for MY treatment?
That same neuro had me on Copaxone for 2 years which did nothing but allow me to lose brain mass and accumulate damage.
AHSCT saved my life. And i was lucky enough to somehow find a neurologist on a blind second opinion request who actually supported my decision to go out and do it in another country.
In my country, Romania, alemtuzumab can be administered only after failing two other approved dmt. My neurologist is not mindless or careless: after several months of Tecfidera, as my MRI continued to show active lesions, she adviced me to switch to ofatumumab (my choice). as a result, now (6 months later) almost all lesions are inactive. but I feel worse; does that mean that ofatumumab fails me? hmm.
as VK says above, it's not that easy to actually take the jump. to put it simpler, to what extent Lemtrada would cure better what is already cured bonus a pletora of side-effects with no impact whatsoever on the symptoms?
Interesting thoughts. I'm a pwMS only diagnosed 7 months ago complicated by the fact not only am I a doctor (emergency medicine) but previously trained in neurorehabilitation treating the most severe secondary/primary progressive MS patients with no treatment options except managing the complications of the disease. I have such a skewed view on the condition maybe a unrealistic one. What saddens me is not once have my team discussed the potential decline I may have in my function but when I discussed AHSCT it was very much pushed aside & made out to be a 'last ditch attempt' at managing the condition which really makes no logical sense. All I remember is the patronising comments of 'if there was a time to have MS now is the time'! I honestly could not wish anyone to be diagnosed with such an unpredictable & potentially debilitating condition but here we are! I'll just continue to keep my fingers crossed or hedge all my bets on being the one who has a benign course...
I hope you of all people have the experience and knowledge to not hope for a benign course but to fight your doctors to get the most highly effective treatment for your disease. Get the best treatment now for your future self.
I forget which post it was from The MS Blog and it was a few months back, but the gist was getting people enrolled in a trial with a heavy duty DMT, treated earlier within 2 weeks or something, “saving brain” Something like that and I probably combined two or more posts in my memory. Discrepancies in education as one of the factors associated with delay, was discussed. Given that topic, and what I read by Ms Nic M above, I guess I don’t need to say anything else, but sure am tempted. "Fingers Crossed and Hedge All My Bets" for a benign course. Do you have a next step planned should the "Hope DMT" not work?
https://gavingiovannoni.substack.com/p/attack-ms
My first neurologist was very open and explained that asking for Kesimpta would lead to delays as it involved a massive amount of paper work to approve the costs. I found the side effects of tecifidera too much, yet could not get a decent conversation about swiching DMDs from the team, so switched to a teaching hospital with an distinct interest in MS. Kesimpta approved, home delivered and carefully monitored every 3 months, all agreed within 8 weeks. I feel in safe hands and know that the team are trying to be as flexible as they can. Yet this hospital is a long journey and I do worry about what will happen when I become more disabled. And I know this will happen and my eyesight will deterioate again. But with this knowledge comes the planning for the future which I think every patient needs. So we have moved to a flat easy access property, had larger rooms and an accessible toilet put in. I know I was lucky to find the monies to do this and there won't be holidays for a long time coming but I feel more prepared and oddly more hopeful. I have a wonderful large team of MS nurses and follow their advice rather than the social media stuff. Exercise daily, take DMTs, pace yourself, keep the brain active and enjoy life!
More on the topic of preparing for the future would be really helpful I think. It’s another area where it can be difficult to find the best solutions and can be paternalistic.
My neuro is really against Alemtuzumab. I am about to get cladribine after developing infusion reactions to tysabri and ocrevus and before that having the traditional Crab dmts. He told me that it's pretty much my last chance, there's nowhere to go after cladribine.
He did scan head and neck in the hope I had new lesions for ahsct but nothing showed up (no contrast and no spine). But then he was doubtful I would qualify because I have had MS more than 25 years.
This will be my 6th dmt, so I do feel a bit last chance. My mobility deteriorates every year and I am losing use of my dominant hand and arm
Terrific column, Prof G, and myriad excellent comments regarding treatment options depending upon geography. Firstly, why is MS not treated as aggressively as cancer is? What jumped out at me was this: “Most neurologists and patients who have MS think they are going to have benign MS with a good prognosis. Nobody is expecting to end up disabled, unemployed, etc.” Underline, bold, italics! That would be me with my first neurologist at diagnosis in the 90s. And it seemed so for many years, particularly post cancer treatment with high doses of cyclophosphamide. MS DMD options were relatively decent in the states until money became the sole criteria. Now we are back to (see Belma’s comment) the old school meds at unaffordable “copays” depending upon one’s insurance. Eye roll. (We have “evergreen” patents for new tweaks. Interferon beta 1-a is an $800 copay; the cost is +/- $1400/mo). This situation is totally unacceptable. I have the most spendy Medicare D policy (a wholly privatized drug plan) which includes no DMDs in pill form other than siponimod. (See Rachael’s comment.) Now I smoulder in my older age, after being told I had neid and was advised to jettison DMDs and put on my red dancing shoes. 5 years later, I took a complete dive. Now, I am advised to resume interferon. Whoopee! That’s what is available to me, although I really pushed for cladribine, tecfidera or terflunamide and damn the torpedoes. But here, financially, be ready to sacrifice your first born for treatment and other necessities, including physiotherapy, home modification, the lot. But I digress. Again, I never expected to be as disabled as I am. MS is a sneaky disease indeed and one that physicians can perhaps unwittingly collude with patients in bright sided denial.
In the US, it can be difficult to find insurance that will cover "2nd line" drugs early on, even cladribine, which isn't quite as effective nor quite as scary.
Because there is no definition of "highly active MS," they can deny anything they want, and do.
It's especially frustrating, since cladribine was a generic injection and reformulated for oral tablets -- even though the generic appears to work \.
It's extremely unclear whether I will be able to access the second year of cladribine/mavenclad. I get different answers from everybody. That's making me very anxious -- but it also tells me that I was right that "maintenance DMT for 13 years with insurance shenanigans" was an absolute nonstarter for me.
Yes. It’s very difficult in the states to get what you need, depending upon insurance and your financial circumstances. I wish you the best. It’s very tired to have this disease and fight with insurance. An understatement.