The problem is that many neurologists believe that they know best! After having Ramsay Hunt ( a side effect of shingles in the cranial nerves) I saw a Professor at the National, who was fantastic. He suggested that the DMT that I was taking may have been the cause and that I should discuss other alternatives with my NHS neurologist. Despite having this all written down in a letter, my neurologist dismissed the Prof’s suggestion. He made little of my facial paralysis, even though I told him that it was causing me more mental anguish than the ms! Needless to say, I stopped going to see him and asked to be referred elsewhere and subsequently got a very snitty letter saying he would no longer be seeing me. This guy would rather talk about himself than really listen - Unfortunately there are probably others just like him.
Sorry for the rant everyone, but I feel better now 😀
If a neurologist is sufficiently paternalistic that they refuse to take a patient's wishes into account then why would they care whether or not colleagues or patients agreed with them?
All of your (admittedly rhetorical) questions can be answered in a typically faux-compassionate, hand-wringing way that resolves nothing and absolves all those responsible of any blame.
"Her consultant has said no and pointed out their centre has virtually stopped using alemtuzumab because as a treatment it is too risky and there are much safer options." - what can patients possibly know about the balance between the incredible risks of these dangerous treatments vs their theoretical, marginal benefits? As a neurologist, her consultant sees countless patients with MS. Of course, they all progress, but slower, on ocrelizumab. But it IS the gold-standard treatment - it eradicates relapses and lesions - surely the MS is therefore all-but-cured and sadly any further progression is tragically unavoidable blah, blah, blah.
"What would happen if in the interim she has a further catastrophic spinal cord relapse that leaves her paralysed? Who would be responsible?" - it is just one of those tragic, tragic unavoidable cases and there's absolutely nothing anyone could possibly have done to help. If only she'd started on ocrelizumab earlier (even though it wouldn't have helped). And so on.
"Therefore, in the case above her previous consultant is breaking the law and putting not only him or herself at risk of a legal challenge, but the relevant NHS Trust as well." - yeah and the day anyone actually succeeds in that legal challenge is the day pigs fly. Alemtuzumab and aHSCT are just too risky and expensive (yeah I know they aren't but the argument is used anyway).
"It is the patient taking the risk"
"YOU CAN'T HANDLE THE TRUTH - I MEAN RISK!!!"
As patients - never mind if we get any say in our treatment, do we even get to see an MS nurse specialist in the flesh? Let alone a proper MS specialist.
I commend your patient for her tenacity. And I commend you for continuing to try to bring the best and most efficacious treatments to us patients despite the resistance.
With MS treatment, risks are there to be managed and mitigated, not avoided. If an MS treatment is hugely risky then put in place the measures to protect the patients WHILE they are on the treatment - don't just withhold it and let them rot. Time is brain, neurologists (in general, obv not you) must stop treating whatever is left of the brain with such distain.
Now that AHSCT is a treatment option on the NHS I have to keep reminding myself to put it on the table when patients with MS are eligible.
Just yesterday in our MDT we had a patient with breakthrough disease activity after two courses of alemtuzumab. Our knee-jerk response was another course of alemtuzumab, but as the patient is eligible for AHSCT why not offer it as alongside the 3rd course as an alternative and let the patient make the choice?
But also make sure the patient has the resources and support in place to manage their risk. You know aHSCT is risky. The patient knows. But what about their GP / primary care providers? If that patient presents with symptoms indicative of problems due to aHSCT how quickly can they receive appropriate care rather than being dismissed for wasting their doctor's time? How quickly can they see a GP? If they have to book 6 weeks or 8 weeks or 3 months ahead to see their GP (I don't know how it works these days) is there any guarantee the patient will still be alive?
This is also part of the risk management, appropriate care outside of the specialist hospital system. Not all of us are lucky enough to be taken seriously by our primary carers.
Oh my gosh, Prof G! At last - a recognition that the patient must have the ultimate say in their treatment!
As a patient, it is exhausting having to do one's own research because of the always present concern that the "expert" doctor isn't considering all the possibilities, and then having to battle to obtain the treatment of choice. Thank you.
I guess I'm one of the lucky ones with a neurologist who pushes the good stuff upfront
Eg he said HSCT would be best for me - unfortunately not offered in Australia
Then said lemtrada is my next best
He offered everything to me saying the injectables and early pills are crap however some people do find them effective
The best are lemtrada followed by ocrevus and then Tysabri + mavenclad although he wishes mavenclad would be more effective
We chose Tysabri due to COVID with the aim to change if I wanted.
I asked for his opinion and he gave me homework and we both decided based on my relative risk. Tbf he has pushed lemtrada twice but I'm a bit nervous of side affects and autoimmune risk.
Thanks Gavin. The ablative therapies (alemtuzumab & AHSCT) have superior data in lasting treatment free remission, and for alemtuzumab brain atrophy and NFL normalisation that warrants their discussion with most patients with more than minor MS. Indefnite immunosuppression (esp CD20, S1P) is certainly highly effective for most on lesional activity measures and disability outcomes, but the long term consequences are not insignificant and COVID-19 has really shown up one of the issues.
Yet despite all drugs being first line in Australia we have the same issue that a lot of centres are paternalistic and make a decision not to discuss on the basis that they are too risky (although I oft suspect too hard is a part of it). Which is also a judgement that even on the data we're not really qualified to make, given the limited long term safety data on those two classes. Yet alone a judgement on the patient's risk weightings, which is that persons to make.
So yes, its a problem. Note I have conflicts of interest with most of the above other than AHSCT, so take what I say with a grain of NaCl. Stephen
Thanks for taking the time to make these very important points. Interestingly, out side of MS and neurology, for example in nephrology, rheumatology and oncology, this paternalistic therapeutic nihilism doesn't seem to be a problem. I wonder if it is something cultural about being a neurologist? Does our speciality select the most conservative clinicians?
Another fantastic article. Thank you for communicating the urgency of our situation. I appreciate how you push 'political' issues to the limits of what must be possible within your role, and 'tell it like it is'. I also found it valuable reading others' experiences here - some of which are heart-wrenching.
Mar 4, 2022·edited Mar 4, 2022Liked by Gavin Giovannoni
I was on Tecfidera in 2019 and due to lymphopenia I was put onto Copaxone, within 6 months I had an extreme relapse (neurologist’s words not mine) which presented bowel and bladder disfunction, mobility problems, eye problems (cross eyed). It has also caused Autnomic Dysreflexia, and a heart problem. I was offered Mavenclad or Ocrevus, I chose Mavenclad, I was never offered Alemtuzumab 🤷♀️So for 2.5 years I’ve been trying to rebuild my strength and my life, it’s not been easy.
If you were eligible for cladribine (Mavenclad) you would have been eligible for alemtuzumab. In my opinion you should have been offered it as well, but the alternative opinion is that your neurologist is in the best position to decide for you, i.e. they may have felt that alemtuzumab was too risky for you.
So I have a further question 🤔 in your opinion which is the more affective treatment; Mavenclad or Alemtuzumab?
Slightly off this topic, this relapse caused significant weakness in the muscles in my back, as a result I now have a t12 spinal fracture and just been diagnosed with Osteoporosis of the spine. Can you bring awareness to the importance of supplementing VitD in PWNS, and especially for ladies going through early menopause. I was never prescribed VitD but put myself on it in November 2019 (my diagnosis was 1997)
I wish I was closer to London and I could be under your care. 🤔
Re: ".. in your opinion which is the more effective treatment; Mavenclad or Alemtuzumab?"
Based on end-organ damage (brain volume loss) and proportion of patients who improve after treatment alemtuzumab is the most effective. But we won't really know until someone does a head-2-head study.
My neuro almost point blank refuses alemtazumab because of the risks of thyroid and other autoimmune issues. When tysabri became a risk for me due to ever more serious infusion reactions I was pushed towards Ocrevus (I have been diagnosed 21 years and had symptoms at least 10 years before that).
Been trying to find a e,mail address to ask a question given up so hope you will be able to answer a question for me please Professor .I have read about a trial being done with ppms with M.S.C.T I am aware of your opinion of H.S.C.T may I ask if you have any thoughts on M.S.C.T I am aware it.s not so invasive and less expensive with I believe shorter hospital stays I would be extremely grateful of your knowledge Thankyou
Mesenchymal stem cells are still experimental in MS and have not be licensed as a treatment or covered by any healthcare system to treat MS. Therefore if you are receiving them it should be done as part of a trial and it should be free, i.e. you should be paying to participate in the trial.
The early results of MSCs is contradictory and I remain unconvinced of their efficacy in MS hence the need for a randomised trial.
It has been my experience that if you as the person with MS are not aware of the possible treatments available and are able to name what you want and insist on it or seek another opinion, you are very likely to be offered a less effective/ cheaper option. The medical profession has all the power and we should be able to trust them. However, that has not been my experience. This lady is very lucky. Thousands of us , not so much
Separate comment for a separate topic: I have a friend who was diagnosed by an older general neurologist who (in 2018) recommended an injectable. What would you recommend a friend say in this situation (non-confrontational, not an expert)? What would you recommend my friend say to a paternalistic doc in this situation? Luckily for this friend she switched meds when she got a MSologist and is doing well.
I find it doubly upsetting because we're conditioned to think "doctor is always right" and to not question. And even a well-meaning doc who like, read the chart wrong or was tired that day, might end up setting someone down a road just because that person is not conditioned to do their own research and talk back.
My advice to this young lady would be listen to Professor Giovanni ( I would have gladly accepted his expertise) I was diagnosed 15 years ago at the age of 47 and as we all know treatments were available then but unfortunately I was told by my Neurologist than I was not considered bad enough to be entitled to treatment!! Fast forward 8 years I was diagnosed over the phone that I had progressed to S.P.M.S. bladder weakness huge mobility issuex Would this have happened if I had been given the chance of treatment? Please keep up the fight to get treatment you are young and deserve the offer of treatment make sure they are making the best decisions for you you have done
The problem is that many neurologists believe that they know best! After having Ramsay Hunt ( a side effect of shingles in the cranial nerves) I saw a Professor at the National, who was fantastic. He suggested that the DMT that I was taking may have been the cause and that I should discuss other alternatives with my NHS neurologist. Despite having this all written down in a letter, my neurologist dismissed the Prof’s suggestion. He made little of my facial paralysis, even though I told him that it was causing me more mental anguish than the ms! Needless to say, I stopped going to see him and asked to be referred elsewhere and subsequently got a very snitty letter saying he would no longer be seeing me. This guy would rather talk about himself than really listen - Unfortunately there are probably others just like him.
Sorry for the rant everyone, but I feel better now 😀
Thank you for standing up for us!
If a neurologist is sufficiently paternalistic that they refuse to take a patient's wishes into account then why would they care whether or not colleagues or patients agreed with them?
All of your (admittedly rhetorical) questions can be answered in a typically faux-compassionate, hand-wringing way that resolves nothing and absolves all those responsible of any blame.
"Her consultant has said no and pointed out their centre has virtually stopped using alemtuzumab because as a treatment it is too risky and there are much safer options." - what can patients possibly know about the balance between the incredible risks of these dangerous treatments vs their theoretical, marginal benefits? As a neurologist, her consultant sees countless patients with MS. Of course, they all progress, but slower, on ocrelizumab. But it IS the gold-standard treatment - it eradicates relapses and lesions - surely the MS is therefore all-but-cured and sadly any further progression is tragically unavoidable blah, blah, blah.
"What would happen if in the interim she has a further catastrophic spinal cord relapse that leaves her paralysed? Who would be responsible?" - it is just one of those tragic, tragic unavoidable cases and there's absolutely nothing anyone could possibly have done to help. If only she'd started on ocrelizumab earlier (even though it wouldn't have helped). And so on.
"Therefore, in the case above her previous consultant is breaking the law and putting not only him or herself at risk of a legal challenge, but the relevant NHS Trust as well." - yeah and the day anyone actually succeeds in that legal challenge is the day pigs fly. Alemtuzumab and aHSCT are just too risky and expensive (yeah I know they aren't but the argument is used anyway).
"It is the patient taking the risk"
"YOU CAN'T HANDLE THE TRUTH - I MEAN RISK!!!"
As patients - never mind if we get any say in our treatment, do we even get to see an MS nurse specialist in the flesh? Let alone a proper MS specialist.
I commend your patient for her tenacity. And I commend you for continuing to try to bring the best and most efficacious treatments to us patients despite the resistance.
With MS treatment, risks are there to be managed and mitigated, not avoided. If an MS treatment is hugely risky then put in place the measures to protect the patients WHILE they are on the treatment - don't just withhold it and let them rot. Time is brain, neurologists (in general, obv not you) must stop treating whatever is left of the brain with such distain.
Now that AHSCT is a treatment option on the NHS I have to keep reminding myself to put it on the table when patients with MS are eligible.
Just yesterday in our MDT we had a patient with breakthrough disease activity after two courses of alemtuzumab. Our knee-jerk response was another course of alemtuzumab, but as the patient is eligible for AHSCT why not offer it as alongside the 3rd course as an alternative and let the patient make the choice?
But also make sure the patient has the resources and support in place to manage their risk. You know aHSCT is risky. The patient knows. But what about their GP / primary care providers? If that patient presents with symptoms indicative of problems due to aHSCT how quickly can they receive appropriate care rather than being dismissed for wasting their doctor's time? How quickly can they see a GP? If they have to book 6 weeks or 8 weeks or 3 months ahead to see their GP (I don't know how it works these days) is there any guarantee the patient will still be alive?
This is also part of the risk management, appropriate care outside of the specialist hospital system. Not all of us are lucky enough to be taken seriously by our primary carers.
Oh my gosh, Prof G! At last - a recognition that the patient must have the ultimate say in their treatment!
As a patient, it is exhausting having to do one's own research because of the always present concern that the "expert" doctor isn't considering all the possibilities, and then having to battle to obtain the treatment of choice. Thank you.
Re: "At last - a recognition that the patient must have the ultimate say in their treatment!"
Not at last; a lot of us have have been practising shared-decision making since the noughties.
Why is it too risky? Do the refuseniks have financial interest in certain drug companies?
Not sure you would have to ask them.
I guess I'm one of the lucky ones with a neurologist who pushes the good stuff upfront
Eg he said HSCT would be best for me - unfortunately not offered in Australia
Then said lemtrada is my next best
He offered everything to me saying the injectables and early pills are crap however some people do find them effective
The best are lemtrada followed by ocrevus and then Tysabri + mavenclad although he wishes mavenclad would be more effective
We chose Tysabri due to COVID with the aim to change if I wanted.
I asked for his opinion and he gave me homework and we both decided based on my relative risk. Tbf he has pushed lemtrada twice but I'm a bit nervous of side affects and autoimmune risk.
Mavenclad is my next choice.
Nail on the head. It is about informed decision making (education), having options (choice) and the ability to change your mind (empowerment).
Absolutely
Makes me sad when people's neurologist aren't advocating for them or offering the entire platter of choice - so to speak
Hoping my journey with mavenclad works and I can be in a good place until the ebv treatments are available.
Thanks Gavin. The ablative therapies (alemtuzumab & AHSCT) have superior data in lasting treatment free remission, and for alemtuzumab brain atrophy and NFL normalisation that warrants their discussion with most patients with more than minor MS. Indefnite immunosuppression (esp CD20, S1P) is certainly highly effective for most on lesional activity measures and disability outcomes, but the long term consequences are not insignificant and COVID-19 has really shown up one of the issues.
Yet despite all drugs being first line in Australia we have the same issue that a lot of centres are paternalistic and make a decision not to discuss on the basis that they are too risky (although I oft suspect too hard is a part of it). Which is also a judgement that even on the data we're not really qualified to make, given the limited long term safety data on those two classes. Yet alone a judgement on the patient's risk weightings, which is that persons to make.
So yes, its a problem. Note I have conflicts of interest with most of the above other than AHSCT, so take what I say with a grain of NaCl. Stephen
Thanks for taking the time to make these very important points. Interestingly, out side of MS and neurology, for example in nephrology, rheumatology and oncology, this paternalistic therapeutic nihilism doesn't seem to be a problem. I wonder if it is something cultural about being a neurologist? Does our speciality select the most conservative clinicians?
Another fantastic article. Thank you for communicating the urgency of our situation. I appreciate how you push 'political' issues to the limits of what must be possible within your role, and 'tell it like it is'. I also found it valuable reading others' experiences here - some of which are heart-wrenching.
I was on Tecfidera in 2019 and due to lymphopenia I was put onto Copaxone, within 6 months I had an extreme relapse (neurologist’s words not mine) which presented bowel and bladder disfunction, mobility problems, eye problems (cross eyed). It has also caused Autnomic Dysreflexia, and a heart problem. I was offered Mavenclad or Ocrevus, I chose Mavenclad, I was never offered Alemtuzumab 🤷♀️So for 2.5 years I’ve been trying to rebuild my strength and my life, it’s not been easy.
Should I have been offered Alemtuzumab???
If you were eligible for cladribine (Mavenclad) you would have been eligible for alemtuzumab. In my opinion you should have been offered it as well, but the alternative opinion is that your neurologist is in the best position to decide for you, i.e. they may have felt that alemtuzumab was too risky for you.
So I have a further question 🤔 in your opinion which is the more affective treatment; Mavenclad or Alemtuzumab?
Slightly off this topic, this relapse caused significant weakness in the muscles in my back, as a result I now have a t12 spinal fracture and just been diagnosed with Osteoporosis of the spine. Can you bring awareness to the importance of supplementing VitD in PWNS, and especially for ladies going through early menopause. I was never prescribed VitD but put myself on it in November 2019 (my diagnosis was 1997)
I wish I was closer to London and I could be under your care. 🤔
Re: "Can you bring awareness to the importance of supplementing VitD in PWNS, and especially for ladies going through early menopause."
https://gavingiovannoni.substack.com/p/vitamin-d-supplements-what-dose?s=w
https://gavingiovannoni.substack.com/p/are-you-and-your-family-taking-vitamin?s=w
https://gavingiovannoni.substack.com/p/is-it-ms-or-is-the-menopause?s=w
Re: ".. in your opinion which is the more effective treatment; Mavenclad or Alemtuzumab?"
Based on end-organ damage (brain volume loss) and proportion of patients who improve after treatment alemtuzumab is the most effective. But we won't really know until someone does a head-2-head study.
Thank you for your responses to my comments and your continued support for PWMS 🙂 keep up your great work!
My neuro almost point blank refuses alemtazumab because of the risks of thyroid and other autoimmune issues. When tysabri became a risk for me due to ever more serious infusion reactions I was pushed towards Ocrevus (I have been diagnosed 21 years and had symptoms at least 10 years before that).
Been trying to find a e,mail address to ask a question given up so hope you will be able to answer a question for me please Professor .I have read about a trial being done with ppms with M.S.C.T I am aware of your opinion of H.S.C.T may I ask if you have any thoughts on M.S.C.T I am aware it.s not so invasive and less expensive with I believe shorter hospital stays I would be extremely grateful of your knowledge Thankyou
Mesenchymal stem cells are still experimental in MS and have not be licensed as a treatment or covered by any healthcare system to treat MS. Therefore if you are receiving them it should be done as part of a trial and it should be free, i.e. you should be paying to participate in the trial.
The early results of MSCs is contradictory and I remain unconvinced of their efficacy in MS hence the need for a randomised trial.
No, patients and dr's should have all choices, if not financially strapped or no insurance.
It has been my experience that if you as the person with MS are not aware of the possible treatments available and are able to name what you want and insist on it or seek another opinion, you are very likely to be offered a less effective/ cheaper option. The medical profession has all the power and we should be able to trust them. However, that has not been my experience. This lady is very lucky. Thousands of us , not so much
Separate comment for a separate topic: I have a friend who was diagnosed by an older general neurologist who (in 2018) recommended an injectable. What would you recommend a friend say in this situation (non-confrontational, not an expert)? What would you recommend my friend say to a paternalistic doc in this situation? Luckily for this friend she switched meds when she got a MSologist and is doing well.
I find it doubly upsetting because we're conditioned to think "doctor is always right" and to not question. And even a well-meaning doc who like, read the chart wrong or was tired that day, might end up setting someone down a road just because that person is not conditioned to do their own research and talk back.
My advice to this young lady would be listen to Professor Giovanni ( I would have gladly accepted his expertise) I was diagnosed 15 years ago at the age of 47 and as we all know treatments were available then but unfortunately I was told by my Neurologist than I was not considered bad enough to be entitled to treatment!! Fast forward 8 years I was diagnosed over the phone that I had progressed to S.P.M.S. bladder weakness huge mobility issuex Would this have happened if I had been given the chance of treatment? Please keep up the fight to get treatment you are young and deserve the offer of treatment make sure they are making the best decisions for you you have done
your research Good luck