Tolebrutinib, a second-generation BTK inhibitor, is the first to show a reduction in disability accumulation in non-relapsing secondary progressive MS or smouldering MS.
Good news Prof G - some level of hope for those of us that appear to be slipping into the SPMS stage with no relapses and stable MRI's but slow but gradual increases in levels of disability.
No, you are not overly negative and removing hope by your informative posts, just realistic and presenting your view, which is what anyone reading MS-Selfie should be aware of anyway. Unfortunately there are a lot of people who find it a release to vent and hurt others in an on-line platform without respect for others feelings - likely they wouldn't present such views person to person. Please keep up the good work in helping us find the best way through our lives with MS.
Prof G from the point at which I discovered your online information back in 2016 (after diagnosis in 2015) I would describe you as a life saver - not as in life or death, but the life I and so many others continue to lead, thanks to you.
Thanks to you I learned I had severe MS that was rapidly evolving and that I was eligible for treatment with Alemtuzumab (despite the opposite message from the neurologist I was seeing)
Fighting got me treated, by which point two relapses within six months had reduced my walking capacity to less than a mile, with a stick, also poor balance and extreme fatigue.
Since 2017 I have been stable; yeah the walking is a maximum of 1-2miles, but I don’t need the stick and I can garden and exercise etc, etc. I have my life - a good life, despite the limitations and it’s down to YOU!
Your post about no one noticing your finishing your clinics and now the nasty emails is really poignant and sad. You have touched thousands of lives in a positive and meaningful way in all the years you’ve worked in neurology and the field of MS.
It’s true that knowledge isn’t always power, that it can alarm, frighten and distress, but shooting the messenger isn’t fair or reasonable - the facts are the facts and as individuals we can choose to access them or avoid them.
I’ve repeatedly thanked my lucky stars that you came into my life, we’ve never met - we’d pass each other on the street as strangers, but the gift you’ve given me is life long, because I’ve had these good years because of you - because of all the time and effect you’ve put into reaching out to PwMS.
Let’s hope it’s not more than a couple of years before here in the UK and abroad Tolebrutinib is available to anyone with non relapsing SPMS 🤞🤞🤞
I can't speak for anyone else, but I welcome the honest perspective... even if it is bittersweet. Besides, I am already at the "dark" end of the disability spectrum, and fed up with years of my neuro's gaslighting while constantly getting worse. How many times should anyone be told "MS is unpredictable" before it's just meaningless.
Maybe with the results of Tolebrutinib we will find more researchers and doctors calling for studies into multi-drug strategies to address the different aspects of the disease: such as the SELs, the inflammatory processes, and the repression of relapses among other issues.
I would never think of you "banging on about smouldering MS." I have learned so much from you and the way you describe MS as a spectrum of the same disease make perfect sense. Again, thank you for everything you do.
I too am sorry about the haters. One commenter has said you literally helped preserve her life- I feel you have helped preserve my mental health. I now have a damn good theory about what is happening to me, know what is at stake, and know the best that can be done for it. This has helped me feel hope when faced with the horrible reality of constant deterioration in what should be the prime of my life. But I do wonder if one key reason why I find power in the information you share rather than fear is I am early in my journey. You allow me to go into it eyes wide open, armed with the ability to advocate for myself, whereas those who are farther down this unpleasant road react with despair to your honesty. They are looking for more than the incremental progress that science can offer us. But that is not your fault.
Hi Wendy, good comment. Methinks you’re onto something…fear, perhaps, but hate? Hmm. Smh. I’m way down the road a piece, as the song goes. I have the utmost appreciation and gratitude for the blunt honesty and respect The Professor has shown to us who are worsening oldies and who want facts, not platitudes. That way, we can make our decisions in (at least for me) what I call the down side. I’ve always been a believer of “hope for the best, prepare for the worst!” and the Selfie has been unique to any medical forum I have ever encountered. I’m not a scientist, so sometimes the pure science makes my eyes glaze over while my smooth cueball brain is straining to understand, but your comment makes me think this community is for everyone on the spectrum who isn’t operating on fear. One thing I’m persuaded of as a smoulderer is that MS really is one disease. Sending good wishes..cheers!
I have never appreciated people who stick their head in the sand. It does no one any good in the long run and I am ever-so-grateful that you treat your patients and the wider MS community like the adults we all are.
Thank you for this update - it's terrific news! I look forward to hearing more about it in due course. :)
Excuse me as I am on only 3 hours sleeps #becauseMS but, as DMT's don't help with smouldering MS and new lesions and relapses don't tell the whole story of MS, are DMT's really doing anything? Maybe we would be in the exact place we are now, even if we didn't take the DMT's. Again, maybe my comprehension is slow at the moment.
I just had a 3 day stint in the hospital because I was weak and numb on one side and couldn't walk, and after stroke was ruled out and my MRI came back with no new lesions, the neurologist in the hospital was giddy with that news. He came to me all smiles and said "Good News, there are no new lesions! Keep taking Kespimpta" and discharged me. Now I didn't expect to stay in the hospital there was no need, but there was no good news. I am progressing and smouldering like a forgotten bonfire and there was zero reason to smile or celebrate "good news".
And to the people sending you nasty emails, that is unacceptable, childish and churlish. I appreciate the information you provide and don't want to be lied to, gaslit or have information held from me because I needn't worry my pretty little head about it. The only thing I can think of is that people are frustrated by how slow everything moves, when time is brain. Just reading your replies to others in this thread brings the reality that this drug will take anywhere from 18-30 months to hit the market, if ever. That being said, that's not your fault, you're the messenger. I and many others appreciate your delivery style and are grateful for the information you provide that we won't find anywhere else.
Before I respond to the content of your post I am anxious to say that I’m not frustrated with you ‘banging on’ about smouldering MS nor with you providing real unadulterated information. Your expertise and efforts are very much appreciated.
I, for one, do not think you are too negative. I appreciate the honesty. I don’t feel that constant “feel good” stories are helpful to me. They make me feel like it’s my fault I’m not getting better. I’m just lazy or have no discipline.
I’m doing my best with diet and exercise. I’m still functioning, but getting worse, albeit slowly. No new lesions but feeling more impact from the ones I already have.
Thank you so much for your dogged determination to fight for us. I will be forever grateful to you and others like you
Couldn’t agree more. I spend so much time trying to do my physio, eat well, no booze. I have little energy for socialising. Sometimes it feels such a boring existence. Unless you live with such a condition it is rarely understood how hard it is to get through days in a half upbeat manner. The disease can ware you down.
Thank you for “banging on about smouldering MS!” As someone who feels gaslit and hopeless with the “pira” label, I hope the banging is enough for patients like me to eventually benefit from a treatment like Tolebrutinib.
I started Mavenclad today, so this news seems like a bit of a good omen, although what does this mean for patients with RRMS? But great news for those with SPMS.
On the subject of rose colored glasses, we've pretty much decided the full truth is the way to go. Sometimes, it's a gut punch to read, though. Perhaps the hostility is a bit of trying to kill the messenger.
I’m a ‘smoulderer ’ now, I’m sitting between RR snd SP on my notes with no relapses. I’m at MS clinic on Wednesday so I will broach the topic as I have been on Tecfidera(and now the cheaper version) for 2.5 years. My foot drop has progressed over the last 8 months quite significantly as has my left hand/arm weakness and general mobility.
Tecfidera worked as advertised for me for over a decade with zero relapses! No one ever mentioned I could get progressively worse in spite of that. I feel a little bit betrayed that no one mentioned alternative DMT’s with a better chance of slowing progression.
Does it potentially mean, that if someone is stable on a current high efficacy DMT like Tysabri or ocrevus switching to this BTK could have a better long term outcome re smouldering MS? And delaying that side potentially?
Let's wait until after ECTRIMS to see all the results. However, this question was not addressed in these studies and will need additional follow-on studies to answer this question.
I came to say this ! But not forgetting- no , we don’t need a rose tinted view - I might even think there was a little cheekiness in that sentence - we’ve roundly rejected that before !
If only. You should read some of the recent emails I have received. Some are quite personal and clearly drafted to be hurtful. Very sad. If people don't want to read my worldview on MS they shouldn't subscribe to MS-Selfie.
I am sorry that you have to deal with that. I think there is a silent majority out there that are grateful for the way you share information. Like others, I like facts and a research-based approach.
People are incredibly frustrated with rate of progress, but should NEVER be rude or hurtful. That is unacceptable. Especially, towards a person like Prof. G who is so obviously a caring person and committed physician. Thanks to him for educating, and not pulling the wool over our eyes! Thanks for some hope today!
It’s disgraceful that people send you those type of messages. I hope they reconsider their behaviour after they’ve calmed down - you didn’t cause their illness. You are one of their best chances to be educated so they can choose the best path for their health! I’m really sorry. Please don’t listen to the “haters” - it means you are telling them something they don’t want to know, doesn’t mean you are happy about the ugly facts.
Awful. Don’t like it, don’t read it. Try the states MS Society. They’re very good at bright siding. Eye roll. I trust those of us who want real information outweigh “mean people”. We can’t thank you enough.
Awful . I’m sorry you deal with that . I think it’s a lgeneral societal malaise to be ‘keyboard warrior’ but perhaps also in pwMS simply fear .
For the record having recently moved from care in two central England MS teams to central Scotland- I can confirm your influence is keenly positive ! I understood for the first time ever the frustration when I mentioned smouldering to my consultant elicited “ yes but that’s currently described as secondary progressive in practice “ The ‘threat ‘ of being moved from highly active rrms while on Ocrevus meaning of course that there would be no DMD available.
I decided then to limit my smouldering discussions to the MS nurse who can assist in treating the symptoms thereof.
Feeling threatened like that is appalling. Any chance of changing neurologists? I could not continue that relationship- it feels at the least emotionally unsafe.
I’ve overstated that I think . I’m new to him but I think he’s good . It was he who was frustrated too ! And the threat is not his - it’s NHS/NiCE rules , if you’re designated as secondary progressive you can’t continue on Ocrevus . We agreed I want to stick with Ocrevus!
Ah, I understand. Basically it might in fact have been a veiled warning not to fall into that NICE trap. It’s a horrible mess and I’m very frustrated with how poorly the NHS (NOT the individual neurologists doing as well as they can) treats us as disposable.
I was referring to the people using it, and having no problems with it like little or no JCV titer. It is incredibly effective. Also, I can't speak to what most people use or want, I just know that anyone on it switching to another drug can be very problematic, and sometimes lead to more disability progression.
I’m on Tysabri and currently find it to be amazing, but I’ve just turned jcv+ and apparently policy here is to take me off it in 2 years. I don’t want to switch but don’t know how to convince my neuro to let me stay on it for as long as safely possible. Any thoughts? Thx.
I am on EID and have been for 4 out of the 6 years on Tysabri. My Jc index is only 0.58 … if I could have more frequent monitoring (currently JC level testing is only permitted for me every 6 months - im based in England and it’s often a “postcode lottery” here so I don’t know if that’s standard) I’d be interested to watch my numbers.
What concerns about switching are you referring to besides IRIS or just general ‘other meds won’t help you as much’? I appreciate your input as I want to go into my appointment next year (😭) with all the info I can get. Thank you.
I’m pretty tired right now but here are my two cents. Prof G, I can’t believe you’re getting trolled. I’m extremely appreciative you don’t bright side us. If these people want to be coddled (or whatever they want) they can always go somewhere else. As I’ve said, I appreciate the honesty without rose colored glasses here. I don’t find it negative, never mind overly negative. Please - keep banging on for us smoulderers and everyone else!
Good news Prof G - some level of hope for those of us that appear to be slipping into the SPMS stage with no relapses and stable MRI's but slow but gradual increases in levels of disability.
No, you are not overly negative and removing hope by your informative posts, just realistic and presenting your view, which is what anyone reading MS-Selfie should be aware of anyway. Unfortunately there are a lot of people who find it a release to vent and hurt others in an on-line platform without respect for others feelings - likely they wouldn't present such views person to person. Please keep up the good work in helping us find the best way through our lives with MS.
Keep keeping it real, Prof G. Don’t sugar coat the info. ✊
You do not spread doom. Unlike others you are honest. I respect honesty.
Prof G from the point at which I discovered your online information back in 2016 (after diagnosis in 2015) I would describe you as a life saver - not as in life or death, but the life I and so many others continue to lead, thanks to you.
Thanks to you I learned I had severe MS that was rapidly evolving and that I was eligible for treatment with Alemtuzumab (despite the opposite message from the neurologist I was seeing)
Fighting got me treated, by which point two relapses within six months had reduced my walking capacity to less than a mile, with a stick, also poor balance and extreme fatigue.
Since 2017 I have been stable; yeah the walking is a maximum of 1-2miles, but I don’t need the stick and I can garden and exercise etc, etc. I have my life - a good life, despite the limitations and it’s down to YOU!
Your post about no one noticing your finishing your clinics and now the nasty emails is really poignant and sad. You have touched thousands of lives in a positive and meaningful way in all the years you’ve worked in neurology and the field of MS.
It’s true that knowledge isn’t always power, that it can alarm, frighten and distress, but shooting the messenger isn’t fair or reasonable - the facts are the facts and as individuals we can choose to access them or avoid them.
I’ve repeatedly thanked my lucky stars that you came into my life, we’ve never met - we’d pass each other on the street as strangers, but the gift you’ve given me is life long, because I’ve had these good years because of you - because of all the time and effect you’ve put into reaching out to PwMS.
Let’s hope it’s not more than a couple of years before here in the UK and abroad Tolebrutinib is available to anyone with non relapsing SPMS 🤞🤞🤞
I can't speak for anyone else, but I welcome the honest perspective... even if it is bittersweet. Besides, I am already at the "dark" end of the disability spectrum, and fed up with years of my neuro's gaslighting while constantly getting worse. How many times should anyone be told "MS is unpredictable" before it's just meaningless.
Maybe with the results of Tolebrutinib we will find more researchers and doctors calling for studies into multi-drug strategies to address the different aspects of the disease: such as the SELs, the inflammatory processes, and the repression of relapses among other issues.
Well put Christopher…it’s not all flowers and sunshine. I want real science and real information.
This is the most positive thing I’ve read about MS for a long time. Will watch this space. Thank you Prof G
I would never think of you "banging on about smouldering MS." I have learned so much from you and the way you describe MS as a spectrum of the same disease make perfect sense. Again, thank you for everything you do.
I too am sorry about the haters. One commenter has said you literally helped preserve her life- I feel you have helped preserve my mental health. I now have a damn good theory about what is happening to me, know what is at stake, and know the best that can be done for it. This has helped me feel hope when faced with the horrible reality of constant deterioration in what should be the prime of my life. But I do wonder if one key reason why I find power in the information you share rather than fear is I am early in my journey. You allow me to go into it eyes wide open, armed with the ability to advocate for myself, whereas those who are farther down this unpleasant road react with despair to your honesty. They are looking for more than the incremental progress that science can offer us. But that is not your fault.
Hi Wendy, good comment. Methinks you’re onto something…fear, perhaps, but hate? Hmm. Smh. I’m way down the road a piece, as the song goes. I have the utmost appreciation and gratitude for the blunt honesty and respect The Professor has shown to us who are worsening oldies and who want facts, not platitudes. That way, we can make our decisions in (at least for me) what I call the down side. I’ve always been a believer of “hope for the best, prepare for the worst!” and the Selfie has been unique to any medical forum I have ever encountered. I’m not a scientist, so sometimes the pure science makes my eyes glaze over while my smooth cueball brain is straining to understand, but your comment makes me think this community is for everyone on the spectrum who isn’t operating on fear. One thing I’m persuaded of as a smoulderer is that MS really is one disease. Sending good wishes..cheers!
I have never appreciated people who stick their head in the sand. It does no one any good in the long run and I am ever-so-grateful that you treat your patients and the wider MS community like the adults we all are.
Thank you for this update - it's terrific news! I look forward to hearing more about it in due course. :)
Excuse me as I am on only 3 hours sleeps #becauseMS but, as DMT's don't help with smouldering MS and new lesions and relapses don't tell the whole story of MS, are DMT's really doing anything? Maybe we would be in the exact place we are now, even if we didn't take the DMT's. Again, maybe my comprehension is slow at the moment.
I just had a 3 day stint in the hospital because I was weak and numb on one side and couldn't walk, and after stroke was ruled out and my MRI came back with no new lesions, the neurologist in the hospital was giddy with that news. He came to me all smiles and said "Good News, there are no new lesions! Keep taking Kespimpta" and discharged me. Now I didn't expect to stay in the hospital there was no need, but there was no good news. I am progressing and smouldering like a forgotten bonfire and there was zero reason to smile or celebrate "good news".
And to the people sending you nasty emails, that is unacceptable, childish and churlish. I appreciate the information you provide and don't want to be lied to, gaslit or have information held from me because I needn't worry my pretty little head about it. The only thing I can think of is that people are frustrated by how slow everything moves, when time is brain. Just reading your replies to others in this thread brings the reality that this drug will take anywhere from 18-30 months to hit the market, if ever. That being said, that's not your fault, you're the messenger. I and many others appreciate your delivery style and are grateful for the information you provide that we won't find anywhere else.
Before I respond to the content of your post I am anxious to say that I’m not frustrated with you ‘banging on’ about smouldering MS nor with you providing real unadulterated information. Your expertise and efforts are very much appreciated.
I, for one, do not think you are too negative. I appreciate the honesty. I don’t feel that constant “feel good” stories are helpful to me. They make me feel like it’s my fault I’m not getting better. I’m just lazy or have no discipline.
I’m doing my best with diet and exercise. I’m still functioning, but getting worse, albeit slowly. No new lesions but feeling more impact from the ones I already have.
Thank you so much for your dogged determination to fight for us. I will be forever grateful to you and others like you
Couldn’t agree more. I spend so much time trying to do my physio, eat well, no booze. I have little energy for socialising. Sometimes it feels such a boring existence. Unless you live with such a condition it is rarely understood how hard it is to get through days in a half upbeat manner. The disease can ware you down.
Thank you for “banging on about smouldering MS!” As someone who feels gaslit and hopeless with the “pira” label, I hope the banging is enough for patients like me to eventually benefit from a treatment like Tolebrutinib.
I started Mavenclad today, so this news seems like a bit of a good omen, although what does this mean for patients with RRMS? But great news for those with SPMS.
On the subject of rose colored glasses, we've pretty much decided the full truth is the way to go. Sometimes, it's a gut punch to read, though. Perhaps the hostility is a bit of trying to kill the messenger.
I’m a ‘smoulderer ’ now, I’m sitting between RR snd SP on my notes with no relapses. I’m at MS clinic on Wednesday so I will broach the topic as I have been on Tecfidera(and now the cheaper version) for 2.5 years. My foot drop has progressed over the last 8 months quite significantly as has my left hand/arm weakness and general mobility.
Tecfidera worked as advertised for me for over a decade with zero relapses! No one ever mentioned I could get progressively worse in spite of that. I feel a little bit betrayed that no one mentioned alternative DMT’s with a better chance of slowing progression.
So this is good news imo
Does it potentially mean, that if someone is stable on a current high efficacy DMT like Tysabri or ocrevus switching to this BTK could have a better long term outcome re smouldering MS? And delaying that side potentially?
Let's wait until after ECTRIMS to see all the results. However, this question was not addressed in these studies and will need additional follow-on studies to answer this question.
I came to say this ! But not forgetting- no , we don’t need a rose tinted view - I might even think there was a little cheekiness in that sentence - we’ve roundly rejected that before !
If only. You should read some of the recent emails I have received. Some are quite personal and clearly drafted to be hurtful. Very sad. If people don't want to read my worldview on MS they shouldn't subscribe to MS-Selfie.
I am sorry that you have to deal with that. I think there is a silent majority out there that are grateful for the way you share information. Like others, I like facts and a research-based approach.
People are incredibly frustrated with rate of progress, but should NEVER be rude or hurtful. That is unacceptable. Especially, towards a person like Prof. G who is so obviously a caring person and committed physician. Thanks to him for educating, and not pulling the wool over our eyes! Thanks for some hope today!
100%!!!
It’s disgraceful that people send you those type of messages. I hope they reconsider their behaviour after they’ve calmed down - you didn’t cause their illness. You are one of their best chances to be educated so they can choose the best path for their health! I’m really sorry. Please don’t listen to the “haters” - it means you are telling them something they don’t want to know, doesn’t mean you are happy about the ugly facts.
Awful. Don’t like it, don’t read it. Try the states MS Society. They’re very good at bright siding. Eye roll. I trust those of us who want real information outweigh “mean people”. We can’t thank you enough.
Awful . I’m sorry you deal with that . I think it’s a lgeneral societal malaise to be ‘keyboard warrior’ but perhaps also in pwMS simply fear .
For the record having recently moved from care in two central England MS teams to central Scotland- I can confirm your influence is keenly positive ! I understood for the first time ever the frustration when I mentioned smouldering to my consultant elicited “ yes but that’s currently described as secondary progressive in practice “ The ‘threat ‘ of being moved from highly active rrms while on Ocrevus meaning of course that there would be no DMD available.
I decided then to limit my smouldering discussions to the MS nurse who can assist in treating the symptoms thereof.
Feeling threatened like that is appalling. Any chance of changing neurologists? I could not continue that relationship- it feels at the least emotionally unsafe.
I’ve overstated that I think . I’m new to him but I think he’s good . It was he who was frustrated too ! And the threat is not his - it’s NHS/NiCE rules , if you’re designated as secondary progressive you can’t continue on Ocrevus . We agreed I want to stick with Ocrevus!
Ah, I understand. Basically it might in fact have been a veiled warning not to fall into that NICE trap. It’s a horrible mess and I’m very frustrated with how poorly the NHS (NOT the individual neurologists doing as well as they can) treats us as disposable.
Anyone ditching Tysabri for another therapeutic, if there are no problems, is a huge mistake.
Can you explain your perspective on this please?
Why? Most people don’t use or want to be on Tysabri
I was referring to the people using it, and having no problems with it like little or no JCV titer. It is incredibly effective. Also, I can't speak to what most people use or want, I just know that anyone on it switching to another drug can be very problematic, and sometimes lead to more disability progression.
Also, no one knows if BTKi(s) can replace high efficacy DMTs yet.
I’m on Tysabri and currently find it to be amazing, but I’ve just turned jcv+ and apparently policy here is to take me off it in 2 years. I don’t want to switch but don’t know how to convince my neuro to let me stay on it for as long as safely possible. Any thoughts? Thx.
Have you asked your doctor about extended interval dosing of natalizumab?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11070702/
I am on EID and have been for 4 out of the 6 years on Tysabri. My Jc index is only 0.58 … if I could have more frequent monitoring (currently JC level testing is only permitted for me every 6 months - im based in England and it’s often a “postcode lottery” here so I don’t know if that’s standard) I’d be interested to watch my numbers.
What concerns about switching are you referring to besides IRIS or just general ‘other meds won’t help you as much’? I appreciate your input as I want to go into my appointment next year (😭) with all the info I can get. Thank you.
Don’t know if it helps but Ocrevus is superb for me and everyone I’ve spoken to in the ward during infusion . Good luck 🤞
I’m pretty tired right now but here are my two cents. Prof G, I can’t believe you’re getting trolled. I’m extremely appreciative you don’t bright side us. If these people want to be coddled (or whatever they want) they can always go somewhere else. As I’ve said, I appreciate the honesty without rose colored glasses here. I don’t find it negative, never mind overly negative. Please - keep banging on for us smoulderers and everyone else!