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!!
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.
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. 🤕
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’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.
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. 😡
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.
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!!
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.
Sorry to be so late commenting, but I just saw this now.
My mother was told she has BOMS . She was dx'd at 42 and was on beta interferons for 12 years. She stopped taking her medication at age 54 because of a combination of shot fatigue and no recent disease activity.
She is now 74 and has had no relapses or apparent disease activity since. I'd guess her EDSS is somewhere in the 1 - 2 range. Aside from some lingering paresthesia in her lower legs and some very minor difficulties with stairs, there is absolutely no sign that she ever had MS. Her MS-related fatigue is completely gone.
I'm not sure whether her situation would be classified as "benign" or "burn-out". She doesn't seem to have ever had much in the way of SAW, but her day-to-day non-relapse condition was definitely worse 25 years ago than it is now.
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!!
These guidelines are applicable across England not only in our centre.
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.
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’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.
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
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. 😡
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.
Sorry to be so late commenting, but I just saw this now.
My mother was told she has BOMS . She was dx'd at 42 and was on beta interferons for 12 years. She stopped taking her medication at age 54 because of a combination of shot fatigue and no recent disease activity.
She is now 74 and has had no relapses or apparent disease activity since. I'd guess her EDSS is somewhere in the 1 - 2 range. Aside from some lingering paresthesia in her lower legs and some very minor difficulties with stairs, there is absolutely no sign that she ever had MS. Her MS-related fatigue is completely gone.
I'm not sure whether her situation would be classified as "benign" or "burn-out". She doesn't seem to have ever had much in the way of SAW, but her day-to-day non-relapse condition was definitely worse 25 years ago than it is now.
Either way, I hope I'm even close to that lucky.