I thought siponomid was only available for those with “active “ MS . Which is a ridiculous definition in my opinion as getting worse seems to always indicate activity !
Yes, it is that is correct. Active SPMS is people who are not on a DMT have to have new or enlarging T2 lesion(s) and/or a Gd-enhancing lesion(s) on MRI and/or a relapse to be eligible for siponimod. However, if you are on an existing DMT you don't require this.
So are you saying that my ms cannot be termed inactive? I’ve been taken off Tecfidera and had an mri and told that my ms is inactive so no point in carrying on with it.
This is the anomaly at the heart of the matter. I was told that I had SPMS but that it was inactive. So no meds and getting more and more disabled . Quite frankly no one knows .
This is the problem! I think that unless you are fortunate enough to be under the care of Prof G or one of his colleagues you’re on a hiding to nothing!
I now see a rehabilitation neurologist and she’s never heard of Prof G - ha ha ha if you didn’t laugh you’d cry!!
Lynn and Tessa, I had a response and lost it…but gist was these are the Catch-22s of being taken off of your medication once you have plateaued or burned out or whatever you’d like to term it. Then what to do to resume a medication? I was on Avonex (yeah, weeny, but better than nothing..) at 65 when I was advised to go on my merry way; I I was stable! Cured! Well it’s getting worse. But, I am now considered too old to take most effective medications, or I would need to be classified RRMS. So, here I am. I hear your frustration! Be well, ladies! 🌷
The NHS England guidelines don't mention age. I don't think you are ever too old to have your MS treated. However, with ageing the risk:benefit profile changes and immunosenescence and comorbidities have to be taken into account.
Yes, you had pointed that out..I wouldn’t be a candidate for Ocrevis, for example. However, you recently mentioned a pill form for those of us who are older. I know I wrote it down (where IS my brain?) to ask my neurologist. I thought it was cladribine? Hope hope..🌷
Soo frustrating- I was told it had to be active and referred to a rehab dr who although very nice, doesn’t seem to know much about ms. So should I ask to see a neurologist and try to get prescribed siponimod? I can still walk with a rollator and have own teeth, hair and all my faculties lol
I've never heard of 'burnt-out MS or BOMS'. Honestly, I have no idea what subset of MS I have. I had undiagnosed/untreated MS for decades, due to NHS medical negligence/gaslighting. I then diagnosed myself, paid for an official diagnosis, and my MS was still 'highly active'. So I guess mine never 'burnt out.' 🤕
I don't think I have SAW or BOMS. I don't think my MS was ever inactive, for those many years, in terms of 'activity' or worsening disability. My MS was 'really obvious', according to the neurologist when I went private and got my first MRI, so it was ravaging my brain the entire time.
Those many years of NHS brainwashing, telling me I had Chronic Fatigue Syndrome and my symptoms had no physical cause, so were my fault and if I just wished hard enough they'd go away... I'm still slowly getting my head around the fact that no, I have an actual disease: serious, incurable, and neurodegenerative.
I just had Lemtrada. Which I think means that either I'll never get any more treatment, or I'll get AHSCT. Those are such opposite extremes. Weirdly, it's too soon for me to worry about SAW or BOMS. But nothing will undo the damage done to me anyway, so it's too late for me. 🤕
Aug 8, 2023·edited Aug 8, 2023Liked by Gavin Giovannoni
Not heard of burnt out version. I’m 63 Had nothing for 7 years the a relapse in 2021, on Tecfidera for last year with no new lesions on a scan but worsening of symptoms which followed a case of shingles last August. I’m now going to see a private neurologist for a second opinion as I’m desperate to stay mobile. Thank you for all your advice and work on MS. Really enjoy your updates .
So if i double up on ala and take 1200mg a day, since ive had hsct with no new lesions the ms might burn itself out? Out of interest has this theory ever been tested in conjunction with lumbar puncture results? I.e to see if the o bands dissapeared in burnt out ms ?
The concept of BOMS is controversial. ChatGPT, the world's new sage, says it doesn't exist. In my experience it is a small minority of pwMS who turn out to develop BOMS.
I’m trying not to read too much into labeling. I’m not certain if “burned out” MS isn’t the same as my diagnosis of “plateauing”. After approximately five years of no DMD, post my “lucky plateau” phase, I’m worse, and frankly, I do not believe it’s down to age. I very much agree with needing hope, but I also need a thorough plan and a medication to stop the downward spiral I am in. (I’m an utter grouch, dealing with my fourth UTI this year, this one in a kidney.) Hopefully, I can get a medication that I don’t have to fight for here in the states. I never thought I’d say I agree with Chatbot. Woo! But hear hear.. I don’t believe MS burns out and leaves us throwing our sticks up in the air! Thank you, Prof G, for all your time and effort.🌷
I’ve never heard of burnout MS, it feels like a little glimmer of hope. I do remember many years ago, a lovely physio observed many older people with MS seem to plateau.
Would you give the same advice about switching from Beta inteferon to Siponimod?
(I’m 54 been on Avonex for 16 years after baby no.2) now EDSS 6.5 and no relapse for at least 6 years - just slow increase of disability) I worry about the immuno suppression and getting infections easily) as having a temperature is close to taking me off my feet. Have an appointment in December to discuss with MS nurse.
Your scenario is being played out across the world. What to do it people who are NEIDA but have SAW on a platform DMT. Will they do better on siponimod, compared to staying on their current DMT? I am not sure the EXPAND trial data answers this question.
Hi Rebecca, I hung in there with Avonex for 20+ years. It was prior to many of the new DMDs. If I were your age, I would consider switching in a heartbeat. I think the newer treatments are much more effective. I regret I didn’t give Tysabri a try when it came out. At 65, I was told I had “plateaued” and I would be fine. Five years later, my age precludes me from newer DMDs. This is just my personal experience. Hoping you feel better.🌷
I've been SPMS for about 7/8 years, and had an MRI (only my 3rd since diagnosis in 1998) and after the scan, was told that I did not have active lesions, so was not deemed to qualify for Siponimod. I feel let down, as it was my only hope. I'm no longer mobile, and in a wheelchair full time now.. can you please advise me. Sheila Rogers
Unfortunately, if you are in a wheelchair you can't be treated with siponimod. I would recommend getting referred for the CHARIOT-MS trial to see if oral cladribine can protect upper limb function.
No, I'm not in the USA, I'm in the UK. This is the first time I've posted on this particular site. I'm just very unhappy about the way I'm told, nothing for me with SPMS, because my MS was not showing active lesions at the time of my MRI. 😡
There is a Sheila, if I recall, that is here that is also in the states. But I completely understand your anger and frustration. We are dealing with the same thing here. I am SPMS supposed to be plateaued and cured! Prof G warned me on this site when my neurologist here now wanted to prescribe siponomod that even though I didn’t require active lesions, I would have had risk issues with it due to my age. He is wonderfully helpful, to say the least. I’m glad to meet you. I hope you find some answers.🌷
Thank you so much. I'm pleased to meet you too. I've had my MS for many years, and was always led to believe, that there' would be lots of treatments around 'in the future' However, the only treatment that I tried, many years ago was Rebif, and I could not stay on it, due to horrendous side effects. I feel now, that I'm 'forgotten about' Thank you for responding. 🙂
Prof G, what do you think about alpha lipoic acid? Is it worth taking? There are good results from an atrophy/EDSS perspective, but some evidence of greater T2-lesion volume. Thank you for your hard work!
Alpha lipoic acid is a very exciting agent for targeting SAW (smoldering associated worsening), which is why it is currently being investigated in clinical trials. Let's wait to see what the trial data shows/
I've been on it now for a couple years; something like US $30 a month. ("R form"). Don't notice anything, other than "nothing". But the innitial study findings sounded good; it shouldn't hurt me (is otherwise probably good), and it's easy access. You can always stop if the data is neg. I tried Biotin same way also. Been seemingly stable for a long time if you read between the lines. I Off DMTs now. I'll post to this topic tommorrow.
Another thing I find incomprehensible is that “SPMS”seems totally like “PPMS”..I stand to be corrected on this ..and that there now apparently are some DMTs for the latter which are contraindicated for the former . Why ?
Yes, all the evidence suggests SPMS and PPMS are similar to each other biologically. However, as the regulators treat SPMS and PPMS as different diseases pharma companies have to do trials in different populations of patients; e.g. siponimod in SPMS and ocrelizumab in PPMS. This is why these drugs are licensed for SPMS and PPMS respectively.
I was told by a neurologist that PWMS reach a plateau at some point. I thought I had misheard her or misunderstood. This was about 10 years ago and I have tried to research it, but found no mention of it on the Internet. I have to admit that the thought of this has remained in the back of my mind, and has given me a bit of much needed hope.
Aug 9, 2023·edited Aug 9, 2023Liked by Gavin Giovannoni
BOMS is new to me. Interesting… not sure what to think to be fair. I fall into the benign category thus far in agreement with my Neurologist as he is about to retire. I am to be sent away now for 2 years until I get another appointment. Note, he disagreed with Prof G and swept it aside when I tried to start conversations. So, I am left to languish until symptoms arise. Fingers crossed they stay away. Xx
I was really encouraged by this podcast and your talk of hope as once you have been told your MS is now in the SP phase there are not any DMT's and you feel a bit written off by the neurology services. As if there is no hope!!
I have had MS for thirty years first RRM for about 15 yrs or so and then SPMS for the last 10 years. I was on beta interferon in my RRM phase and nothing since. My neurologist has mentioned your MS has burnt out following no new lesions on MRI of the brain, no imaging has been done on spinal cord?!
I am awaiting an MRI scan of the spine as if this shows a new lesion I may qualify for siponimod =hope!!
Aug 8, 2023·edited Aug 8, 2023Liked by Gavin Giovannoni
Professor Gg,you hit the nail on the head. This is the chart exactly what happened to me and my first ten to 15 years I was relapsed from then the saw kicked in and then I was given the strong the mavenclad in the middle of my saw. Which obviously was too late as I kept progressing but all of a sudden and I hit bottom in March of this year when they took me to e emergency 0 since then. I've slowly been recovering. I'm pretty sure I have burned out MS but also I feel like I'm slowly improving similar. ? How doctor Richard Burt said that many patients. Do get better, but it takes a few years, he has a book out Excellent, excellent Selfie !!!!
Fascinating. I am 63 & My neurologist believes my own immune system will 'slow down' from now on and that my MS will be less active and less aggressive. I really hope Prof MacDonald is correct. I remember him from when I saw him at Queen Sq, aged 34. Old School neurologist, complete with extremely posh accent, pinstripe suit and dickie bow.
I thought siponomid was only available for those with “active “ MS . Which is a ridiculous definition in my opinion as getting worse seems to always indicate activity !
Yes, it is that is correct. Active SPMS is people who are not on a DMT have to have new or enlarging T2 lesion(s) and/or a Gd-enhancing lesion(s) on MRI and/or a relapse to be eligible for siponimod. However, if you are on an existing DMT you don't require this.
So are you saying that my ms cannot be termed inactive? I’ve been taken off Tecfidera and had an mri and told that my ms is inactive so no point in carrying on with it.
This is the anomaly at the heart of the matter. I was told that I had SPMS but that it was inactive. So no meds and getting more and more disabled . Quite frankly no one knows .
This is the problem! I think that unless you are fortunate enough to be under the care of Prof G or one of his colleagues you’re on a hiding to nothing!
I now see a rehabilitation neurologist and she’s never heard of Prof G - ha ha ha if you didn’t laugh you’d cry!!
Lynn and Tessa, I had a response and lost it…but gist was these are the Catch-22s of being taken off of your medication once you have plateaued or burned out or whatever you’d like to term it. Then what to do to resume a medication? I was on Avonex (yeah, weeny, but better than nothing..) at 65 when I was advised to go on my merry way; I I was stable! Cured! Well it’s getting worse. But, I am now considered too old to take most effective medications, or I would need to be classified RRMS. So, here I am. I hear your frustration! Be well, ladies! 🌷
Re: ".. I am now considered too old "
The NHS England guidelines don't mention age. I don't think you are ever too old to have your MS treated. However, with ageing the risk:benefit profile changes and immunosenescence and comorbidities have to be taken into account.
Yes, you had pointed that out..I wouldn’t be a candidate for Ocrevis, for example. However, you recently mentioned a pill form for those of us who are older. I know I wrote it down (where IS my brain?) to ask my neurologist. I thought it was cladribine? Hope hope..🌷
These guidelines are applicable across England not only in our centre.
If you are not on a DMT and have no recent activity your SPMS is defined as inactive SPMS and hence you are not eligible for siponimod.
Under the current guidance, which is quite new, you don't need activity to switch from DMF (Tecfidera) to siponimod.
Soo frustrating- I was told it had to be active and referred to a rehab dr who although very nice, doesn’t seem to know much about ms. So should I ask to see a neurologist and try to get prescribed siponimod? I can still walk with a rollator and have own teeth, hair and all my faculties lol
I've never heard of 'burnt-out MS or BOMS'. Honestly, I have no idea what subset of MS I have. I had undiagnosed/untreated MS for decades, due to NHS medical negligence/gaslighting. I then diagnosed myself, paid for an official diagnosis, and my MS was still 'highly active'. So I guess mine never 'burnt out.' 🤕
It takes decades to define BOMS, i.e. I would say the plateau needs to be at least 10 years after a period of SAW.
I don't think I have SAW or BOMS. I don't think my MS was ever inactive, for those many years, in terms of 'activity' or worsening disability. My MS was 'really obvious', according to the neurologist when I went private and got my first MRI, so it was ravaging my brain the entire time.
Those many years of NHS brainwashing, telling me I had Chronic Fatigue Syndrome and my symptoms had no physical cause, so were my fault and if I just wished hard enough they'd go away... I'm still slowly getting my head around the fact that no, I have an actual disease: serious, incurable, and neurodegenerative.
I just had Lemtrada. Which I think means that either I'll never get any more treatment, or I'll get AHSCT. Those are such opposite extremes. Weirdly, it's too soon for me to worry about SAW or BOMS. But nothing will undo the damage done to me anyway, so it's too late for me. 🤕
Not heard of burnt out version. I’m 63 Had nothing for 7 years the a relapse in 2021, on Tecfidera for last year with no new lesions on a scan but worsening of symptoms which followed a case of shingles last August. I’m now going to see a private neurologist for a second opinion as I’m desperate to stay mobile. Thank you for all your advice and work on MS. Really enjoy your updates .
So if i double up on ala and take 1200mg a day, since ive had hsct with no new lesions the ms might burn itself out? Out of interest has this theory ever been tested in conjunction with lumbar puncture results? I.e to see if the o bands dissapeared in burnt out ms ?
The concept of BOMS is controversial. ChatGPT, the world's new sage, says it doesn't exist. In my experience it is a small minority of pwMS who turn out to develop BOMS.
I’m trying not to read too much into labeling. I’m not certain if “burned out” MS isn’t the same as my diagnosis of “plateauing”. After approximately five years of no DMD, post my “lucky plateau” phase, I’m worse, and frankly, I do not believe it’s down to age. I very much agree with needing hope, but I also need a thorough plan and a medication to stop the downward spiral I am in. (I’m an utter grouch, dealing with my fourth UTI this year, this one in a kidney.) Hopefully, I can get a medication that I don’t have to fight for here in the states. I never thought I’d say I agree with Chatbot. Woo! But hear hear.. I don’t believe MS burns out and leaves us throwing our sticks up in the air! Thank you, Prof G, for all your time and effort.🌷
🌸
I would only define a plateau as BOMS is if it is longer than 10 years and there are no signs of MS disease activity (MRI and CSF stable).
I’ve never heard of burnout MS, it feels like a little glimmer of hope. I do remember many years ago, a lovely physio observed many older people with MS seem to plateau.
Would you give the same advice about switching from Beta inteferon to Siponimod?
(I’m 54 been on Avonex for 16 years after baby no.2) now EDSS 6.5 and no relapse for at least 6 years - just slow increase of disability) I worry about the immuno suppression and getting infections easily) as having a temperature is close to taking me off my feet. Have an appointment in December to discuss with MS nurse.
Thanks for all you do
Your scenario is being played out across the world. What to do it people who are NEIDA but have SAW on a platform DMT. Will they do better on siponimod, compared to staying on their current DMT? I am not sure the EXPAND trial data answers this question.
Hi Rebecca, I hung in there with Avonex for 20+ years. It was prior to many of the new DMDs. If I were your age, I would consider switching in a heartbeat. I think the newer treatments are much more effective. I regret I didn’t give Tysabri a try when it came out. At 65, I was told I had “plateaued” and I would be fine. Five years later, my age precludes me from newer DMDs. This is just my personal experience. Hoping you feel better.🌷
I've been SPMS for about 7/8 years, and had an MRI (only my 3rd since diagnosis in 1998) and after the scan, was told that I did not have active lesions, so was not deemed to qualify for Siponimod. I feel let down, as it was my only hope. I'm no longer mobile, and in a wheelchair full time now.. can you please advise me. Sheila Rogers
sheilarogers220@btinternet.com
Unfortunately, if you are in a wheelchair you can't be treated with siponimod. I would recommend getting referred for the CHARIOT-MS trial to see if oral cladribine can protect upper limb function.
Thank you for responding to my comment. I don't think that I'd be eligible for that either. I guess that's it for me.
The following link summarises the CHARIOT-MS trial:
https://classic.clinicaltrials.gov/ct2/show/NCT04695080
Sheila, we have talked before. I’m so sorry you are going through this. Are you in the states? I can’t recall. ? 💞
No, I'm not in the USA, I'm in the UK. This is the first time I've posted on this particular site. I'm just very unhappy about the way I'm told, nothing for me with SPMS, because my MS was not showing active lesions at the time of my MRI. 😡
There is a Sheila, if I recall, that is here that is also in the states. But I completely understand your anger and frustration. We are dealing with the same thing here. I am SPMS supposed to be plateaued and cured! Prof G warned me on this site when my neurologist here now wanted to prescribe siponomod that even though I didn’t require active lesions, I would have had risk issues with it due to my age. He is wonderfully helpful, to say the least. I’m glad to meet you. I hope you find some answers.🌷
Thank you so much. I'm pleased to meet you too. I've had my MS for many years, and was always led to believe, that there' would be lots of treatments around 'in the future' However, the only treatment that I tried, many years ago was Rebif, and I could not stay on it, due to horrendous side effects. I feel now, that I'm 'forgotten about' Thank you for responding. 🙂
Prof G, what do you think about alpha lipoic acid? Is it worth taking? There are good results from an atrophy/EDSS perspective, but some evidence of greater T2-lesion volume. Thank you for your hard work!
Alpha lipoic acid is a very exciting agent for targeting SAW (smoldering associated worsening), which is why it is currently being investigated in clinical trials. Let's wait to see what the trial data shows/
I’d like to know your opinion on it too, please!
I've been on it now for a couple years; something like US $30 a month. ("R form"). Don't notice anything, other than "nothing". But the innitial study findings sounded good; it shouldn't hurt me (is otherwise probably good), and it's easy access. You can always stop if the data is neg. I tried Biotin same way also. Been seemingly stable for a long time if you read between the lines. I Off DMTs now. I'll post to this topic tommorrow.
Another thing I find incomprehensible is that “SPMS”seems totally like “PPMS”..I stand to be corrected on this ..and that there now apparently are some DMTs for the latter which are contraindicated for the former . Why ?
Yes, all the evidence suggests SPMS and PPMS are similar to each other biologically. However, as the regulators treat SPMS and PPMS as different diseases pharma companies have to do trials in different populations of patients; e.g. siponimod in SPMS and ocrelizumab in PPMS. This is why these drugs are licensed for SPMS and PPMS respectively.
I was told by a neurologist that PWMS reach a plateau at some point. I thought I had misheard her or misunderstood. This was about 10 years ago and I have tried to research it, but found no mention of it on the Internet. I have to admit that the thought of this has remained in the back of my mind, and has given me a bit of much needed hope.
BOMS is new to me. Interesting… not sure what to think to be fair. I fall into the benign category thus far in agreement with my Neurologist as he is about to retire. I am to be sent away now for 2 years until I get another appointment. Note, he disagreed with Prof G and swept it aside when I tried to start conversations. So, I am left to languish until symptoms arise. Fingers crossed they stay away. Xx
I was really encouraged by this podcast and your talk of hope as once you have been told your MS is now in the SP phase there are not any DMT's and you feel a bit written off by the neurology services. As if there is no hope!!
I have had MS for thirty years first RRM for about 15 yrs or so and then SPMS for the last 10 years. I was on beta interferon in my RRM phase and nothing since. My neurologist has mentioned your MS has burnt out following no new lesions on MRI of the brain, no imaging has been done on spinal cord?!
I am awaiting an MRI scan of the spine as if this shows a new lesion I may qualify for siponimod =hope!!
https://www.nationalacademies.org/event/06-29-2023/toward-a-common-research-agenda-in-infection-associated-chronic-illnesses-a-workshop-to-examine-common-overlapping-clinical-and-biological-factors?fbclid=IwAR31Rh7Rr2uTM8fawPRzK5SlWGrZsCdRIpES8dsWTQxszWHEjhYz7DlTQ0c
Professor Gg,you hit the nail on the head. This is the chart exactly what happened to me and my first ten to 15 years I was relapsed from then the saw kicked in and then I was given the strong the mavenclad in the middle of my saw. Which obviously was too late as I kept progressing but all of a sudden and I hit bottom in March of this year when they took me to e emergency 0 since then. I've slowly been recovering. I'm pretty sure I have burned out MS but also I feel like I'm slowly improving similar. ? How doctor Richard Burt said that many patients. Do get better, but it takes a few years, he has a book out Excellent, excellent Selfie !!!!
I think to define yourself as having BOMS you need to be on a plateau for at least 10 years.
Fascinating. I am 63 & My neurologist believes my own immune system will 'slow down' from now on and that my MS will be less active and less aggressive. I really hope Prof MacDonald is correct. I remember him from when I saw him at Queen Sq, aged 34. Old School neurologist, complete with extremely posh accent, pinstripe suit and dickie bow.