I realize that you are researching the correlation of EBV, and Multiple Sclerosis, the former contributing to the development of MS; other research centres are considering an EBV vaccine to ameliorate MS such as this one in Seattle:
Excellent article. The derisking for EBV should also apply to Mavenclad. My monocytes were slashed (very effective for me), and I spent a year an a half with issues. Finally saw infectious disease and am on a good antiviral. I’m not the only one. Perhaps more in the over 50s?
I'm having my second course of Alemtuzumab soon at Royal London. Honestly, compared to everything else I've been through, it's not a big deal. I would say to anyone with MS who has a chance at Alemtuzumab or AHSCT: grab the opportunity. If one's MRI's stop showing activity then those options can go away, and the other 4 DMT's I've been on made me feel far worse than Alemtuzumab. Compared to what MS can do, Alemtuzumab/AHSCT are by far the lesser evil. Alemtuzumab or AHSCT would be a much harder choice, but I tried and couldn't get access to AHSCT, so didn't have that decision to make.
Thank you for the great information. I am in Canada and I just completed my 3rd cycle of Alemtuzumab yesterday, ( 1st Feb 2020, 2nd Feb 2021). My latest MRI showed new lesions and slowly expanding lesions as well as I had new mild MS attacks. I had to push my neurologist to get this treatment. He wanted to wait and see for 6 -9 months, then maybe try Ocrevous. I hope this cycle will quiet things down for awhile.
Hi I’m in Ocrelizumab, i’ve not had the meningococcal or the haemophilus influenza vaccines. Should I be asking my GP for these vaccines ? I’m 59 and mostly a wheelchair user.
I’m on ocrelizumab and am 54 so eligible for shingrix vaccination. Does Prof G recommend this and if so where in my infusion gap should I have it? My next infusion is in Jan, I had my flu jab last week and my COVID jab is next week.
She should have been given alemtuzumab right off the bat. I can't believe any doctor with a conscience would prescribe dimethyl fumarate to an MS patient in the present day.
Excellent post. Thank you. Hypothetically speaking, of course (since you have not examined such a patient), I'm wondering what you might do or suggest for an established Definite RRMS patient (dx'd by top MS doctors at a major MS center in US in 2003), who has been on long-term Copaxone, then long-term Rebif, then long-term Tecfidera (until ALC got too low and suddenly become JCV+) and has had a very, very mild course to date over the past 20 years and is now 57 years old with stable MRIs, should do in terms of DMT? Seems that the risk-benefit calculus for such an older person in term of all of the new DMTs (anti-CD20s, etc.) at his age and with stable MRIs might not be worth it. In other words, is there ever a scenario (like the above, or otherwise) where you feel DMTs no longer make sense (worth the risks) and perhaps, instead, that continued close monitoring for progression (6-mos MRI's etc.) would be more prudent? We're all very familiar with and respectful of the concept of smoldering MS, but is there ever a scenario when you recommend stopping all DMTs in such older patients with relatively mild courses and low EDSS scores? Thanks.
Hey Pete- I’m not a medical doctor but thought you may appreciate 2 points- 1) there is currently clinical study regarding this question and it has been written about. My recollection is, if you are stable and 60 or so, it may be worth the gamble to stop (check that- I read only The Selfie, The MS Blog and MS News Today, so it had to be within those), and 2) I was interferon for 23 years until 2017. Basically stable but my lower leg and foot became very painful over a few years. Must have been MS, right? We switched to Ocrevus and then the pandemic began, and I said nope, no more infusions. So I’ve been on nothing for 3 years and nothing has changed, but my foot/leg which has very slowly been improving (again, over the course of 3 years). Summary point 2?- When you get older (I’m 64), you can assume other things are going to come along, so don’t automatically assume they are MS. I suppose I am SPMS but changes are so small and subtle, that I’d rather have a fully functioning immune system going into the final stretch. (I also take Alpha Lipoic Acid- they’re studying it for older MS people (brain atrophy); it may be promising and you can get it over-the-counter (just another thought) [totally legit]. Good luck to you.
Still hoping to hear if there is ever a scenario (like the above, or otherwise) where you feel DMTs no longer make sense (worth the risks) and perhaps, instead, that continued close monitoring for progression (6-mos MRI's etc.) would be more prudent? Thanks.
Astoundingly comprehensive, thank you!
Hello,
I realize that you are researching the correlation of EBV, and Multiple Sclerosis, the former contributing to the development of MS; other research centres are considering an EBV vaccine to ameliorate MS such as this one in Seattle:
https://www.facebook.com/sharer/sharer.php?u=https%3A%2F%2Fwww.fredhutch.org%2Fcontent%2Fwww%2Fen%2Fnews%2Fcenter-news%2F2022%2F06%2Fepstein-barr-vaccine-multiple-sclerosis.html
I really hope that we will gain access to EBV vaccines soon!
Excellent article. The derisking for EBV should also apply to Mavenclad. My monocytes were slashed (very effective for me), and I spent a year an a half with issues. Finally saw infectious disease and am on a good antiviral. I’m not the only one. Perhaps more in the over 50s?
I'm having my second course of Alemtuzumab soon at Royal London. Honestly, compared to everything else I've been through, it's not a big deal. I would say to anyone with MS who has a chance at Alemtuzumab or AHSCT: grab the opportunity. If one's MRI's stop showing activity then those options can go away, and the other 4 DMT's I've been on made me feel far worse than Alemtuzumab. Compared to what MS can do, Alemtuzumab/AHSCT are by far the lesser evil. Alemtuzumab or AHSCT would be a much harder choice, but I tried and couldn't get access to AHSCT, so didn't have that decision to make.
Thank you for the great information. I am in Canada and I just completed my 3rd cycle of Alemtuzumab yesterday, ( 1st Feb 2020, 2nd Feb 2021). My latest MRI showed new lesions and slowly expanding lesions as well as I had new mild MS attacks. I had to push my neurologist to get this treatment. He wanted to wait and see for 6 -9 months, then maybe try Ocrevous. I hope this cycle will quiet things down for awhile.
Great read gavin, great rationale. I would love to see you post transplant to gain some insights and am still at barts under the hemo specialist.
Couldn’t agree with your recommendations more. Excellent informative piece. Thank you.
I had complete liver failure twenty years ago from ms medications so it’s a gamble… words snd words etc… it’s a gamble
Hi I’m in Ocrelizumab, i’ve not had the meningococcal or the haemophilus influenza vaccines. Should I be asking my GP for these vaccines ? I’m 59 and mostly a wheelchair user.
I’m on ocrelizumab and am 54 so eligible for shingrix vaccination. Does Prof G recommend this and if so where in my infusion gap should I have it? My next infusion is in Jan, I had my flu jab last week and my COVID jab is next week.
She should have been given alemtuzumab right off the bat. I can't believe any doctor with a conscience would prescribe dimethyl fumarate to an MS patient in the present day.
Fantastic. Thank you!
Excellent post. Thank you. Hypothetically speaking, of course (since you have not examined such a patient), I'm wondering what you might do or suggest for an established Definite RRMS patient (dx'd by top MS doctors at a major MS center in US in 2003), who has been on long-term Copaxone, then long-term Rebif, then long-term Tecfidera (until ALC got too low and suddenly become JCV+) and has had a very, very mild course to date over the past 20 years and is now 57 years old with stable MRIs, should do in terms of DMT? Seems that the risk-benefit calculus for such an older person in term of all of the new DMTs (anti-CD20s, etc.) at his age and with stable MRIs might not be worth it. In other words, is there ever a scenario (like the above, or otherwise) where you feel DMTs no longer make sense (worth the risks) and perhaps, instead, that continued close monitoring for progression (6-mos MRI's etc.) would be more prudent? We're all very familiar with and respectful of the concept of smoldering MS, but is there ever a scenario when you recommend stopping all DMTs in such older patients with relatively mild courses and low EDSS scores? Thanks.
Hey Pete- I’m not a medical doctor but thought you may appreciate 2 points- 1) there is currently clinical study regarding this question and it has been written about. My recollection is, if you are stable and 60 or so, it may be worth the gamble to stop (check that- I read only The Selfie, The MS Blog and MS News Today, so it had to be within those), and 2) I was interferon for 23 years until 2017. Basically stable but my lower leg and foot became very painful over a few years. Must have been MS, right? We switched to Ocrevus and then the pandemic began, and I said nope, no more infusions. So I’ve been on nothing for 3 years and nothing has changed, but my foot/leg which has very slowly been improving (again, over the course of 3 years). Summary point 2?- When you get older (I’m 64), you can assume other things are going to come along, so don’t automatically assume they are MS. I suppose I am SPMS but changes are so small and subtle, that I’d rather have a fully functioning immune system going into the final stretch. (I also take Alpha Lipoic Acid- they’re studying it for older MS people (brain atrophy); it may be promising and you can get it over-the-counter (just another thought) [totally legit]. Good luck to you.
Don't know if this fits, perhaps there are references in the original article. In The MS Blog (Barts) today: https://multiple-sclerosis-research.org/2022/08/return-of-ms-after-stopping-treatment/
Still hoping to hear if there is ever a scenario (like the above, or otherwise) where you feel DMTs no longer make sense (worth the risks) and perhaps, instead, that continued close monitoring for progression (6-mos MRI's etc.) would be more prudent? Thanks.