The apparent ‘evidence of absence’ i.e. no difference in efficacy and/or safety between anti-CD20 dosing intervals should not be accepted in the ‘absence of evidence’ i.e. no controlled trials.
The Swedes have an incentive to prescribe rituximab and to use as low a dose as possible as they are in charge of prescribing budgets. Therefore they are always going to say that low-dose rituximab is as good as higher more frequent dosing of ocrelizumab.
Thanks for pointing this out. This is an unconscious bias that may affect their interpretation of the data and result them in promoting rituximab over ocrelizumab and ofatumumab and going for low-dose vs. high-dose rituximab.
Jan 11, 2022·edited Jan 11, 2022Liked by Gavin Giovannoni
Prof G.. You mentioned something about Asian ancestry and this set alarm bells ringing in my head! What if, it's not Asian ancestry but "Mongol" ancestry? I am part Native American. My Mom was half Native.. and I am soooo prone to infections like this case that I have now refused altogether to go on any type of DMT that will severely suppress my immune system. I had my flu shot in late October 2021. I got the flu in late December in spite of this. It is a much milder case than years past but none the less it is a break thru infection. I have not yet started a new DMT since discontinuing the Mayzent last year. I saw my primary doc today and tested negative for COVID but positive for Flu.. Go figure.. Nearly 2 weeks later i am still running fever and have sore throat, headache, body aches etc.. I go thru stuff like this all the time. One year, several summers back, just before I was dx'd with MS, I was in and out of the hospital 7 times with pneumonia! I had a pneumonia vaccine after my first stay and ended up returning 6 more times anyway.. I just think my immune system is just that messed up. I mean when I was living with my son and his family, the kids would bring some cooties home from school, every one would be sick for a few days and then they were fine.. me? I would be sick for 3 weeks.. So when I read that part I started wondering that maybe it's less about Asian descent and more about the Mongol descent.. of which Native American Indians are.. now I am going to have to research that.. LOL.. I love doing research so this is going to be fun.. Thanks for all you do..
The serious infections signal with ocrelizumab was definitely in Asian patients with rheumatoid arthritis and is confounded by concomitant administration of methotrexate. I have little doubt that some people with subtle genetic or even acquire immune deficiency syndromes will be at higher risk of infections on ocrelizumab and other anti-CD20 therapies. I would suggest seeing a clinical immunologist who can do a full work-up.
This is wrong, that is wrong, only way to know what is right is have Prof.G to do the trials. His collegues and other scientists are wasting their time.
It is not about me doing trials, but applying the same standards to evidence to clinical decision making that regulators do when approving new treatments or extending or changing the label of existing therapies. I just think the data that we are using to justify adaptive anti-CD20 dosing for pwMS is not good enough in terms of relative efficacy and safety. All I am asking for us the MS community is to maintain clinical equipoise and not adopt routine AID prematurely.
Prof G....i am an anti CD20 patient who has just tested positive for the second time in 6 months. I only started this therapy 4 months prior to the first vaccines coming on stream so i am cursing my luck. In your clinic, are you shifting patients on anti CD20 medication on to other DMTs in order to combat this issue? i am aware that this has been accepted as a reason to shift to Alemtuzumab and Cladribine within some HCP's. So far, my second dose has been mild and i will hopefully get some antivirals tomorrow but looking at the future landscape, it cannot be good to keep getting infected even if we are able to fight it off and receive assistance in doing so
Re: "are you shifting patients on anti CD20 medication on to other DMTs in order to combat this issue?"
Only if they request to be switched. You have to remember the anti-CD20 therapies are the only 1st-line high efficacy DMT available on the NHS, which means a lot of pwMS on an anti-CD20 can't be escalated to other high-efficacy DMTs. The exception being pwMS who had highly-active or rapidly-evolving severe MS before starting ocrelizumab.
yes, i thought the same but i have seen cases where patients have been 'escalated' to alemtuzumab using the disability of mounting a vaccine response as the justification for having 'failed' a therapy. Postcode / neuro lottery i suppose. It seems slightly unfair and unethical that patients are left with the options of 1. lower efficacy treatment in exchange for the ability to mount a vaccine response or 2. stay on current treatment and be left exposed to the virus. For ever.
Prof. G — What is your recommendation for patients on B-cell depleting therapies regarding Evusheld? Evusheld is now available in the US and patients on Ocrevus, Rituxan, and Kesimpta are prioritized. Should all anti-CD20 patients who are offered Evusheld get it? Are there any downsides? I know it's a new drug with not much data, but patients need to make decisions quickly as there aren't many doses and they're being offered in lotteries. Thank you.
The Swedes have an incentive to prescribe rituximab and to use as low a dose as possible as they are in charge of prescribing budgets. Therefore they are always going to say that low-dose rituximab is as good as higher more frequent dosing of ocrelizumab.
Thanks for pointing this out. This is an unconscious bias that may affect their interpretation of the data and result them in promoting rituximab over ocrelizumab and ofatumumab and going for low-dose vs. high-dose rituximab.
Prof G.. You mentioned something about Asian ancestry and this set alarm bells ringing in my head! What if, it's not Asian ancestry but "Mongol" ancestry? I am part Native American. My Mom was half Native.. and I am soooo prone to infections like this case that I have now refused altogether to go on any type of DMT that will severely suppress my immune system. I had my flu shot in late October 2021. I got the flu in late December in spite of this. It is a much milder case than years past but none the less it is a break thru infection. I have not yet started a new DMT since discontinuing the Mayzent last year. I saw my primary doc today and tested negative for COVID but positive for Flu.. Go figure.. Nearly 2 weeks later i am still running fever and have sore throat, headache, body aches etc.. I go thru stuff like this all the time. One year, several summers back, just before I was dx'd with MS, I was in and out of the hospital 7 times with pneumonia! I had a pneumonia vaccine after my first stay and ended up returning 6 more times anyway.. I just think my immune system is just that messed up. I mean when I was living with my son and his family, the kids would bring some cooties home from school, every one would be sick for a few days and then they were fine.. me? I would be sick for 3 weeks.. So when I read that part I started wondering that maybe it's less about Asian descent and more about the Mongol descent.. of which Native American Indians are.. now I am going to have to research that.. LOL.. I love doing research so this is going to be fun.. Thanks for all you do..
The serious infections signal with ocrelizumab was definitely in Asian patients with rheumatoid arthritis and is confounded by concomitant administration of methotrexate. I have little doubt that some people with subtle genetic or even acquire immune deficiency syndromes will be at higher risk of infections on ocrelizumab and other anti-CD20 therapies. I would suggest seeing a clinical immunologist who can do a full work-up.
This is wrong, that is wrong, only way to know what is right is have Prof.G to do the trials. His collegues and other scientists are wasting their time.
It is not about me doing trials, but applying the same standards to evidence to clinical decision making that regulators do when approving new treatments or extending or changing the label of existing therapies. I just think the data that we are using to justify adaptive anti-CD20 dosing for pwMS is not good enough in terms of relative efficacy and safety. All I am asking for us the MS community is to maintain clinical equipoise and not adopt routine AID prematurely.
Prof G....i am an anti CD20 patient who has just tested positive for the second time in 6 months. I only started this therapy 4 months prior to the first vaccines coming on stream so i am cursing my luck. In your clinic, are you shifting patients on anti CD20 medication on to other DMTs in order to combat this issue? i am aware that this has been accepted as a reason to shift to Alemtuzumab and Cladribine within some HCP's. So far, my second dose has been mild and i will hopefully get some antivirals tomorrow but looking at the future landscape, it cannot be good to keep getting infected even if we are able to fight it off and receive assistance in doing so
Re: "are you shifting patients on anti CD20 medication on to other DMTs in order to combat this issue?"
Only if they request to be switched. You have to remember the anti-CD20 therapies are the only 1st-line high efficacy DMT available on the NHS, which means a lot of pwMS on an anti-CD20 can't be escalated to other high-efficacy DMTs. The exception being pwMS who had highly-active or rapidly-evolving severe MS before starting ocrelizumab.
yes, i thought the same but i have seen cases where patients have been 'escalated' to alemtuzumab using the disability of mounting a vaccine response as the justification for having 'failed' a therapy. Postcode / neuro lottery i suppose. It seems slightly unfair and unethical that patients are left with the options of 1. lower efficacy treatment in exchange for the ability to mount a vaccine response or 2. stay on current treatment and be left exposed to the virus. For ever.
Prof. G — What is your recommendation for patients on B-cell depleting therapies regarding Evusheld? Evusheld is now available in the US and patients on Ocrevus, Rituxan, and Kesimpta are prioritized. Should all anti-CD20 patients who are offered Evusheld get it? Are there any downsides? I know it's a new drug with not much data, but patients need to make decisions quickly as there aren't many doses and they're being offered in lotteries. Thank you.