‘Gavinitis’ refers to adopting a treatment strategy of offering and potentially starting your patients with multiple sclerosis on high-efficacy DMTs first-line.
"I was surprised when another UK colleague diagnosed a close colleague and friend with ‘Gavinitis’."
“GAVINITIS?”
A dismissal in slight sarcasm, sure, but it’s really a complement that speaks VOLUMES.
To say someone has caught GAVINITIS because they follow the research and practices of Professor Gavin Giovannoni, a Chief neuroscientist at a world-class biomedical research institute with too many postnominal qualifications to list, whose focus is on MS Epstein–Barr virus pathology, defining the ‘MS endophenotype’, MS-related neurodegeneration, MS biomarker discovery, and CHANGING the paradigm of MS care means he (you) are a DISRUPTER.
A more fitting term is “POSITIVE DISRUPTER”
DISRUPTER /dis·rupt·or/
a person, company, or form of technology that causes a radical change in an existing industry or market by means of INNOVATION and CHANGE.
So, sign me up. Add it to my MS diagnosis. I have “Gavinitis.”
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?
Oct 22, 2023·edited Oct 22, 2023Liked by Gavin Giovannoni
To your point on those of us over 50, why isn't short-term (IRT) Immunosuppression Reconstitution Therapy the "Go-to" standard for those of us over 50? Cladribine/MAVENCLAD does just that but does one better. Instead of suppressing all or parts of the immune system indefinitely, it works like aHSCT by activating cell “death” and rebooting your system with less viral load. Unlike aHSCT, it doesn’t wipe out your complete system, but your immune system still gets a “soft reset.” It’s safer and readily available, and since you are only immunosuppressed for around 5-6 months, solves the continuous immunosuppression issue for those 50+.
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.
I just did the same on Ocrevus and am waiting for my neuro to file the insurance and script of cladribine. Feel like it's a bit of a fight to get him on board though, but I'm not taking no for an answer. You're actually in a great spot as just diagnosed and have no disability at your (our) age. You CAN keep it back if you act on this now--especially with Cladribine. I wish you only the very best. AJ x
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
Like you, I like Mavenclad. At my diagnosis in 2008, there were only three low-efficacy options, and before that steroids. Now, so many, but it's the recent research of the last two years that is setting up the game-changing breakthrough. It's coming. Stay well.
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.
"I was surprised when another UK colleague diagnosed a close colleague and friend with ‘Gavinitis’."
“GAVINITIS?”
A dismissal in slight sarcasm, sure, but it’s really a complement that speaks VOLUMES.
To say someone has caught GAVINITIS because they follow the research and practices of Professor Gavin Giovannoni, a Chief neuroscientist at a world-class biomedical research institute with too many postnominal qualifications to list, whose focus is on MS Epstein–Barr virus pathology, defining the ‘MS endophenotype’, MS-related neurodegeneration, MS biomarker discovery, and CHANGING the paradigm of MS care means he (you) are a DISRUPTER.
A more fitting term is “POSITIVE DISRUPTER”
DISRUPTER /dis·rupt·or/
a person, company, or form of technology that causes a radical change in an existing industry or market by means of INNOVATION and CHANGE.
So, sign me up. Add it to my MS diagnosis. I have “Gavinitis.”
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?
To your point on those of us over 50, why isn't short-term (IRT) Immunosuppression Reconstitution Therapy the "Go-to" standard for those of us over 50? Cladribine/MAVENCLAD does just that but does one better. Instead of suppressing all or parts of the immune system indefinitely, it works like aHSCT by activating cell “death” and rebooting your system with less viral load. Unlike aHSCT, it doesn’t wipe out your complete system, but your immune system still gets a “soft reset.” It’s safer and readily available, and since you are only immunosuppressed for around 5-6 months, solves the continuous immunosuppression issue for those 50+.
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.
I just did the same on Ocrevus and am waiting for my neuro to file the insurance and script of cladribine. Feel like it's a bit of a fight to get him on board though, but I'm not taking no for an answer. You're actually in a great spot as just diagnosed and have no disability at your (our) age. You CAN keep it back if you act on this now--especially with Cladribine. I wish you only the very best. AJ x
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
Like you, I like Mavenclad. At my diagnosis in 2008, there were only three low-efficacy options, and before that steroids. Now, so many, but it's the recent research of the last two years that is setting up the game-changing breakthrough. It's coming. Stay well.
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.