‘Gavinitis’ refers to adopting a treatment strategy of offering and potentially starting your patients with multiple sclerosis on high-efficacy DMTs first-line.
I hope that Gavintis also develops into Gavintis Geriatricus as a sub-genre. I still don't understand the 60 year old cut off for the most effective DMDs when the evidence shows that 10 year efficacy most promising. Or are older people with MS expected to live with disability as a consequence of growing old? Why when surely the clinical and care costs would be less if MS continues to be treated? It is time older people were included in research and policy guidance since more than 50% of people with MS are over the age of 55 years.
I didn’t know that- I was diagnosed over 50 with my first relapse and we are all expected to work until at least 67 now so that age cut off is shocking to
same for me Caroline. It is shocking knowing that on Kesimpta the maximum I can have is 3 years yet I am still working. What happens then and why this ageist attitude?
That's very well put and something I absolutely agree with. I'm 54, diagnosed 5 months ago with PPMS, no disability but do have neuropathy. I would take cladribine without hesitation. I've been given the option of Ocrevus very recently but I'd honestly like to try the soft 'reset' that cladribine has the potential to do.
Dx in 2006. I was placed on such a wimpy med back then and Lordy, I am 100% paying for it now. Of course, as always, Prof, G. is spot on. Unfortunately, in my country, pharma and insurance always dictate choice. And they have the complete opposite outlook on the beginning of our disease path. In turn, IMO, this outlook has made so very many American neurologists unresponsive to the aggressive approach to halting MS before it ravages the body. In fact, at my age (62), in my condition (very poor mobility) they basically put you out to pasture.
The only good news I may report is that I now travel 2.5 hours to see the greatest neurologist I have ever met. I belong to a Facebook group, SMS, Solving MS. Thank goodness, after communicating with them, I was pointed to Brigham & Women’s MS Ctr.
Let us know what treatment you are offered or advocate for. Like yourself I was diagnosed a short while back (2008) but had low efficacy ( not that there was anything for how I presented ie not to devastated). Now at 61, I wonder what, if anything can help and what my Canada, will support. So near but so far. Wishing you all the best.
Oct 21, 2023·edited Oct 21, 2023Liked by Gavin Giovannoni
My neurologist at Southampton hospital has Gavinitis too. She made the case to the hospital committee for lemtrada as first treatment in 2017 as I had very aggressive RRMS. Choice was tysabri or lemtrada, the committee preferred tysabri but I had high levels of jcv . I am very grateful, as I was able to continue with my full time job and the physical (leg) problems went. Still got symptoms such as cog fog and fatigue but I haven’t had a disabling relapse since 2017. Edited to say I will let her know she has Gavinitis!
Gavinitis? Many MS patients have been arguing for access to the most effective treatment immediately for years, if not decades! Talk about medical gaslighting unless it's the "doctors idea"!
Having seen 2 neuros in australia for my initial diagnosis I am stunned other parts of the world don’t start high efficacy asap
Both neuros offered Tysabri, ocrevus, Kesimpta as first line. My current neurologist (2+ years) pushed for lemtrada as well and mentioned I’d be a great candidate for aHSCT but he acknowledged unfortunately Australia doesn’t do it first line and if I had cash to go Russia.
We settled on Tysabri due to Covid with lemtrada or Mavenclad a backup.
Anyone not on high efficacy as a first dmt I genuinely worry for
I think it's good that opinions are changing. Unfortunately I couldn't get through the barrier of gps to ever actually see a specialist, but it's good for the people who can. I do spread the word about MS Selfie when I can. I feel that it's important for people to educate themselves as much as they can because I know better than most how doctors can be.
Absolutely 100% agree. I’m initiating Ocrelizumab first treatment 90% plus and no longer initiate tablets at all except for particular reasons. And that would be Mavenclad in young women. And maybe Fingolimod in those that insist on tablets. I’ve never used Aubagio. Using more and more Kesimpta.
How I wish you had been my neurologist. Diagnosed 12 years ago I only have had a treatment offered last year , Siponimod, despite asking regularly. It makes me really angry.
Can you please explain the statistics/modelling behind the long term forecasting on the bottom right of the poster?
I met someone recently who said they were told by neurology at diagnosis last year that their MS was ‘mild’ and didn’t need any treatment. I do hope there is more to that story else that’s a pretty indefensible position to take as a neurology team these days I’d have thought.
That's exactly what my first neurologist said to me. She retired and her replacement has offered me ocrevus. I may go that route but do want to make a case for cladribine one last time at my appointment next month. It really is mild but why wait for it to worsen? I think the hesitation with the first neurologist was my my age, 54, and the possibility of having my immune system suppressed.
You extend the curves using a regression until 50% of the population reach the endpoint. This is simply extending the survival curve using a trend line, i.e. what is expected to occur over time based on how the population has responded over the last 10 years.
I'd gladly take a strong dose of Gavinitis! You're a credit to your profession. Your patients and those of us who wish we were your patients, damn well know it! 👌
Well said Jen! My sentiments as well. It’s so true that it depends on the area you live and the Neuro you have as if your MS will quickly progress. That makes me so upset and angry. My life is on a downward spiral as this disease continues to win the battles
The dangerous ones are those neurologists who say they support your theories and proposals, yet when faced with a patient, resort to wait & see... They need flushing out!
I should know: PPMS for 2.5 years since diagnosis (and as you put so succinctly, undiscovered for many years before that). At 61, I've just had my first ocrelizumab infusion - with a different NHS Trust. Spurred on by you, Gavin, and the insight you offer, I went looking for answers and took affirmative action. I fear for the majority who are inclined to trust their clinicians and lay themselves open to the whims and prejudices of the less-proactive members of your profession.
Yes, I was told that "no treatment" might be a reasonable option for RRMS due to my advanced age (over 40 = one foot in the grave). I switched neurologist.
I'd be interested if this UK colleague could come out of the woodwork and set out his or her case. What is the argument, currently, for escalation? Because I've found the argument for flipping very compelling, but I'm no expert so I'd just rather listen to the arguments.
Interesting report on the MS Society website about a study apparently showing that PwMS in the UK are less likely to be on a DMT (at all) than their counterparts in other countries Sweden, Germany, Czech Republic... why is this? Interestingly, they also point out that in the UK we do more monitoring of people on DMTs. The implication is presumably that in the UK, neurologists don't like to put their patients on DMTs that are going to require heavy monitoring and use up local resources. Do we do too much monitoring, or are we just better in that regard? What is the safe level of monitoring and what is the resources trade-off between more monitoring/more patients starting DMTs? Of course, as a patient I'd also want safe monitoring, but repeat hospital attendances for MRIs, bloods etc. are a burden on patients too and significantly reduce our employability.
The model suggests that "monitoring and audit" is driving low DMT use in the UK. I presume this means, neurologists don't like to put you on a DMT in case it might bite them in the bum.
I hope this kind of disparity will be picked up on by UK neurologists in their discussions and/or by NICE when it comes to reviewing treatment choices.
Shame Brexit precludes moving overseas!
The research itself is also interesting. Well worth a read.
Emma, this is interesting. I also switched neurologists as I was only offered one medium effect DMD and despite asking for Kestimpta from the outset, was refused on the basis of all the paperwork and the fact that the trust did not readily agree to funding in the UK. I switched to a major teaching hospital with strong links to the Walton Centre in Liverpool. I was offered Kesimpta. The application had to go to a funding board so I was left with no cover for 3 months which was a bit stressy. However, this was agreed but with the caveat of only till 60 years so clealry based on ageist and financial reasons. If I am doing fine with no active MS then I will not receive the Kesimpta but paradoxically will be at more risk of relapse post-60 as the Kesimpta will no longer be in my body. Some of this is about trust, control and hope. I feel that on my 60th all that will be removed and it just seems unfair. I’m still working and happy to do so but feel that the system is working against me and my neurologist. Other medications will arguably cost more and the costs following a severe relapse will be more than staying on Kesimpta.
Oct 22, 2023·edited Oct 22, 2023Liked by Gavin Giovannoni
Fiona there is no age limit on Kesimpta, it was not tested in over 55s but the product information says that no dose adjustment is expected to be necessary in the over 55s and the NHS algorithm doesn't set age as a stopping criteria so it sounds like age discrimination; there are studies where they have stopped drugs in older people and MS has become active again.
Prof G do you know if the algorithm is going to be changed to remove the stopping criteria of 'Development of inability to walk (EDSS 7.0), persistent for more than 6 months due to MS'. I find this completely illogical and very upsetting. A single relapse could cause this and although I'm sure many centres may turn a blind eye (about half of my old tysabri group were wheelchair users) it does give some neuros an option to stop treating. Do you know whether this would be classed as disability discrimination and whether it has been tested in court, similarly Fiona's case sounds like age discrimination?
I previously contacted the MS Society about the algorithm but they don't seem to see a problem with it. Many thanks for all your work!
Re: " Prof G do you know if the algorithm is going to be changed to remove the stopping criteria of 'Development of inability to walk (EDSS 7.0), persistent for more than 6 months due to MS'. "
No. As far as I know this stopping criteria remains in place. This is why I want us to do the SALVAGE trial to challenge this position. It is not evidence-based and exists because the trials did not include subjects who were EDSS 7.0 at baseline.
It is quite annoying when NICE criteria are tied to a very specific trial population. Presumably people running trials may be tempted to cherry pick their trial population to try to demonstrate safety and efficacy, get the drug on the market, move on to the next drug candidate. And perhaps it is simply regarded as "harder" for logistical reasons to include more disabled people -getting to appointments and so on - so it's easier not to bother (an insidious kind of disability discrimination). "Old", disabled, comorbidities, progressive MS... not in the trial. Surely part of the ethics of trial design should be to justify exclusions e.g. on grounds of disability. Just as you wouldn't restrict a trial to a specific ethnic group without some clear justification.
Then for NICE, absence of evidence is taken as evidence of absence...even when there is no real reason why the drug would not work in a wider group.
Personally I hope neurologists everywhere catch a big dose of Gavinitis 😁. Thank you Gavin - you are so appreciated by PwMS.
I hope that Gavintis also develops into Gavintis Geriatricus as a sub-genre. I still don't understand the 60 year old cut off for the most effective DMDs when the evidence shows that 10 year efficacy most promising. Or are older people with MS expected to live with disability as a consequence of growing old? Why when surely the clinical and care costs would be less if MS continues to be treated? It is time older people were included in research and policy guidance since more than 50% of people with MS are over the age of 55 years.
This 👆♥️
I didn’t know that- I was diagnosed over 50 with my first relapse and we are all expected to work until at least 67 now so that age cut off is shocking to
Me
same for me Caroline. It is shocking knowing that on Kesimpta the maximum I can have is 3 years yet I am still working. What happens then and why this ageist attitude?
That's very well put and something I absolutely agree with. I'm 54, diagnosed 5 months ago with PPMS, no disability but do have neuropathy. I would take cladribine without hesitation. I've been given the option of Ocrevus very recently but I'd honestly like to try the soft 'reset' that cladribine has the potential to do.
Thank you, that's very kind. I wish you the same!
Sometimes you are casting pearls amongst swine!
Dx in 2006. I was placed on such a wimpy med back then and Lordy, I am 100% paying for it now. Of course, as always, Prof, G. is spot on. Unfortunately, in my country, pharma and insurance always dictate choice. And they have the complete opposite outlook on the beginning of our disease path. In turn, IMO, this outlook has made so very many American neurologists unresponsive to the aggressive approach to halting MS before it ravages the body. In fact, at my age (62), in my condition (very poor mobility) they basically put you out to pasture.
The only good news I may report is that I now travel 2.5 hours to see the greatest neurologist I have ever met. I belong to a Facebook group, SMS, Solving MS. Thank goodness, after communicating with them, I was pointed to Brigham & Women’s MS Ctr.
Let us know what treatment you are offered or advocate for. Like yourself I was diagnosed a short while back (2008) but had low efficacy ( not that there was anything for how I presented ie not to devastated). Now at 61, I wonder what, if anything can help and what my Canada, will support. So near but so far. Wishing you all the best.
Copaxone(7 years)
My neurologist at Southampton hospital has Gavinitis too. She made the case to the hospital committee for lemtrada as first treatment in 2017 as I had very aggressive RRMS. Choice was tysabri or lemtrada, the committee preferred tysabri but I had high levels of jcv . I am very grateful, as I was able to continue with my full time job and the physical (leg) problems went. Still got symptoms such as cog fog and fatigue but I haven’t had a disabling relapse since 2017. Edited to say I will let her know she has Gavinitis!
Gavinitis? Many MS patients have been arguing for access to the most effective treatment immediately for years, if not decades! Talk about medical gaslighting unless it's the "doctors idea"!
I told my neurologist I wasn’t interested in low effective meds - I wanted to nuke it before it did too
Much damage. Makes no sense to prescribe ineffective treatments
Exactly right! It's so important to be your own best health advocate.
Having seen 2 neuros in australia for my initial diagnosis I am stunned other parts of the world don’t start high efficacy asap
Both neuros offered Tysabri, ocrevus, Kesimpta as first line. My current neurologist (2+ years) pushed for lemtrada as well and mentioned I’d be a great candidate for aHSCT but he acknowledged unfortunately Australia doesn’t do it first line and if I had cash to go Russia.
We settled on Tysabri due to Covid with lemtrada or Mavenclad a backup.
Anyone not on high efficacy as a first dmt I genuinely worry for
Join the HSCT Fundraising group! It's achievable.
I think it's good that opinions are changing. Unfortunately I couldn't get through the barrier of gps to ever actually see a specialist, but it's good for the people who can. I do spread the word about MS Selfie when I can. I feel that it's important for people to educate themselves as much as they can because I know better than most how doctors can be.
IMHO ‘Gavinitis’ - sounds very sarcastic and not what I would expect hear from a doctor.
I would ask you, have you ever read some of the things written about Prof. G. by some of the doctors globally?
No, and from the inherent implication in your question I’m probably very glad I haven’t.
Absolutely 100% agree. I’m initiating Ocrelizumab first treatment 90% plus and no longer initiate tablets at all except for particular reasons. And that would be Mavenclad in young women. And maybe Fingolimod in those that insist on tablets. I’ve never used Aubagio. Using more and more Kesimpta.
How I wish you had been my neurologist. Diagnosed 12 years ago I only have had a treatment offered last year , Siponimod, despite asking regularly. It makes me really angry.
Seems like in order to flip the pyramid in the UK, you are also going to have to flip the NHS treatment algorithm.
Can you please explain the statistics/modelling behind the long term forecasting on the bottom right of the poster?
I met someone recently who said they were told by neurology at diagnosis last year that their MS was ‘mild’ and didn’t need any treatment. I do hope there is more to that story else that’s a pretty indefensible position to take as a neurology team these days I’d have thought.
That's exactly what my first neurologist said to me. She retired and her replacement has offered me ocrevus. I may go that route but do want to make a case for cladribine one last time at my appointment next month. It really is mild but why wait for it to worsen? I think the hesitation with the first neurologist was my my age, 54, and the possibility of having my immune system suppressed.
You extend the curves using a regression until 50% of the population reach the endpoint. This is simply extending the survival curve using a trend line, i.e. what is expected to occur over time based on how the population has responded over the last 10 years.
Yes sorry i meant what is it trying to convey?
I'd gladly take a strong dose of Gavinitis! You're a credit to your profession. Your patients and those of us who wish we were your patients, damn well know it! 👌
Well said Jen! My sentiments as well. It’s so true that it depends on the area you live and the Neuro you have as if your MS will quickly progress. That makes me so upset and angry. My life is on a downward spiral as this disease continues to win the battles
The dangerous ones are those neurologists who say they support your theories and proposals, yet when faced with a patient, resort to wait & see... They need flushing out!
I should know: PPMS for 2.5 years since diagnosis (and as you put so succinctly, undiscovered for many years before that). At 61, I've just had my first ocrelizumab infusion - with a different NHS Trust. Spurred on by you, Gavin, and the insight you offer, I went looking for answers and took affirmative action. I fear for the majority who are inclined to trust their clinicians and lay themselves open to the whims and prejudices of the less-proactive members of your profession.
Yes, I was told that "no treatment" might be a reasonable option for RRMS due to my advanced age (over 40 = one foot in the grave). I switched neurologist.
I'd be interested if this UK colleague could come out of the woodwork and set out his or her case. What is the argument, currently, for escalation? Because I've found the argument for flipping very compelling, but I'm no expert so I'd just rather listen to the arguments.
Interesting report on the MS Society website about a study apparently showing that PwMS in the UK are less likely to be on a DMT (at all) than their counterparts in other countries Sweden, Germany, Czech Republic... why is this? Interestingly, they also point out that in the UK we do more monitoring of people on DMTs. The implication is presumably that in the UK, neurologists don't like to put their patients on DMTs that are going to require heavy monitoring and use up local resources. Do we do too much monitoring, or are we just better in that regard? What is the safe level of monitoring and what is the resources trade-off between more monitoring/more patients starting DMTs? Of course, as a patient I'd also want safe monitoring, but repeat hospital attendances for MRIs, bloods etc. are a burden on patients too and significantly reduce our employability.
The model suggests that "monitoring and audit" is driving low DMT use in the UK. I presume this means, neurologists don't like to put you on a DMT in case it might bite them in the bum.
I hope this kind of disparity will be picked up on by UK neurologists in their discussions and/or by NICE when it comes to reviewing treatment choices.
Shame Brexit precludes moving overseas!
The research itself is also interesting. Well worth a read.
https://journals.sagepub.com/doi/10.1177/17562864231198963
Emma, this is interesting. I also switched neurologists as I was only offered one medium effect DMD and despite asking for Kestimpta from the outset, was refused on the basis of all the paperwork and the fact that the trust did not readily agree to funding in the UK. I switched to a major teaching hospital with strong links to the Walton Centre in Liverpool. I was offered Kesimpta. The application had to go to a funding board so I was left with no cover for 3 months which was a bit stressy. However, this was agreed but with the caveat of only till 60 years so clealry based on ageist and financial reasons. If I am doing fine with no active MS then I will not receive the Kesimpta but paradoxically will be at more risk of relapse post-60 as the Kesimpta will no longer be in my body. Some of this is about trust, control and hope. I feel that on my 60th all that will be removed and it just seems unfair. I’m still working and happy to do so but feel that the system is working against me and my neurologist. Other medications will arguably cost more and the costs following a severe relapse will be more than staying on Kesimpta.
Fiona there is no age limit on Kesimpta, it was not tested in over 55s but the product information says that no dose adjustment is expected to be necessary in the over 55s and the NHS algorithm doesn't set age as a stopping criteria so it sounds like age discrimination; there are studies where they have stopped drugs in older people and MS has become active again.
Prof G do you know if the algorithm is going to be changed to remove the stopping criteria of 'Development of inability to walk (EDSS 7.0), persistent for more than 6 months due to MS'. I find this completely illogical and very upsetting. A single relapse could cause this and although I'm sure many centres may turn a blind eye (about half of my old tysabri group were wheelchair users) it does give some neuros an option to stop treating. Do you know whether this would be classed as disability discrimination and whether it has been tested in court, similarly Fiona's case sounds like age discrimination?
I previously contacted the MS Society about the algorithm but they don't seem to see a problem with it. Many thanks for all your work!
Re: " Prof G do you know if the algorithm is going to be changed to remove the stopping criteria of 'Development of inability to walk (EDSS 7.0), persistent for more than 6 months due to MS'. "
No. As far as I know this stopping criteria remains in place. This is why I want us to do the SALVAGE trial to challenge this position. It is not evidence-based and exists because the trials did not include subjects who were EDSS 7.0 at baseline.
It is quite annoying when NICE criteria are tied to a very specific trial population. Presumably people running trials may be tempted to cherry pick their trial population to try to demonstrate safety and efficacy, get the drug on the market, move on to the next drug candidate. And perhaps it is simply regarded as "harder" for logistical reasons to include more disabled people -getting to appointments and so on - so it's easier not to bother (an insidious kind of disability discrimination). "Old", disabled, comorbidities, progressive MS... not in the trial. Surely part of the ethics of trial design should be to justify exclusions e.g. on grounds of disability. Just as you wouldn't restrict a trial to a specific ethnic group without some clear justification.
Then for NICE, absence of evidence is taken as evidence of absence...even when there is no real reason why the drug would not work in a wider group.