Thank you. My doctor didn't want to write that I am SPMS (although clearly I am progressing with no relapses or MRI changes), and he said "Once we write SPMS, the ship has sailed, there is no coming back, and you will be limited to siponimod only".
I am glad that he thought that way, because I received Mavenclad ;-)
I believe personally, that if we have MS, then that's what it should be called. There's no need to label it as RRMS or SPMS, because there's no need to differentiate. Similarly there's no need to say you have 'active disease' because we should all be treated the same. One of the main reasons, is that those of us who have been told that we show no signs of active lesions at the time of their MRI, are made to feel that they are not as as bad as those who have active lesions, and therefore are denied a treatment. I think that however far we've come on our individual journey's, it should be called MS. I believe that too much of the research being done, is focused on the basis of 'what stage' we are at, whereas it should be focused on 'how far into our individual journey's we are, and how it affects our daily life. Then, if we're happy to try a treatment, we should be allowed to.
Totally agree. Had there been meds on my diagnosis I would have been offered a far better choice than I was when the first injectables came out. My lesions were bright and I had / have loss of axons. Black holes. I had all the injectables and Gilenya and had intolerable side effects. Put up with it for a decade. My ms had not had new lesions for years so it was clear where I was. The only SPMS drug is much same as Gilenya. So I was ok for it to be labelled SPMS. As I thought something might come about for this. I’m taking part in Octupus. So not a lost cause.
This impossible and out the hands of most people with MS. It is unlikely that a neurologist will listen to a patient and amend their diagnosis. This should not be made my responsibility. This only contributes to my feelings of hopelessness.
I think we should drop progression and relapse. Both confuse people. Relapse is most commonly used in terms of addiction etc and implies that you've gone back to how you have been before when in MS it means further, new disease activity. To confuse matters even more, we use 'flare' to mean what everyone else thinks we mean when we say 'relapse'. It's hard enough explaining MS as it is.
On the main point, I cannot imagine telling any consultant to change how they want to classify me and having that interaction go well! Also, at the moment it is a bit of a sausage machine in the UK - if we are all seen as having MS with varying percentages of each component, won't they have to make more nuanced decisions about treatment? Is there the capacity for that? I can see we'd get better patient outcomes if they did do it properly.
I agree that MS is one disease however there is a need to identify the newly diagnosed and also spread the message about smouldering MS.
Educating pharma is probably the most important because they really do want to test their drugs on people with RRMS or SPMS and everything will cascade down from there.
I suspect that the labels SPMS and RRMS will hang around for a long time. Is Smouldering MS an officially recognized diagnosis by the medical profession and is it a criteria that is used by anyone else,
I WISH I could just have MS as the dx! I’m in the US, and for insurance reasons, I didn’t really have an option when I received the SPMS label. My insurance and government benefits determine more than just my DMT, unfortunately. In some ways, I’m fortunate to have the SPMS label, but Ocrevus was a disastrous experiment, from which I have yet to recover.
I’ve been labelled with SPMS. No new lesions on latest head and spinal MRI scans, but my MS is definitely getting worse. Tried Sipinomod but suffered chronic diarrhoea. So now not taking any DMT. Feel totally abandoned by my HCP.
I have RRMS, my neurologist wouldn't consider reclassifying me as anything else.
I am keen to get on the frexalimab trial.
However - I had mavenclad. This means I can't get on the RRMS frexalimab trial.
If I had SPMS then I would be eligible for the SPMS frexalimab trial as a former mavenclad patient. But not the RRMS trial.
I don't think my neuro would consider some sort of diagnosis hokey-cokey and to be honest I wouldn't want to waste their time with it. But it does kinda raise the question - what exactly ARE the drug companies trying to test?
I have no idea what's going on with me other than I keep losing ability fairly quickly, and I'm already all the way down to only able to use my index finger a little bit on my left hand and that's it. I can still move my head and shoulders, and sit in a wheelchair for many hours. But now there are many days where I have trouble holding my head up.
I wanted to take the second year of Mavenclad, but my neurologist warned me that that wouldn't be a good idea because of all of the UTIs I kept developing. But after all the information I've read on Mavenclad it doesn't seem that I would've been that severely immunocompromised to hurt me. And now I regret my decision because the damage since then is permanent now. I'm really worried about the future because it doesn't seem like any of the medications will help me, and it is still far away for the reparative therapies, if they even work. I have tried really hard for years to figure out this horrible disease, and to get the best help I could for managing and mitigating multiple sclerosis. It has been an uphill battle the whole time.
I am pretty confused now... for years I kept arguing with my neurologist that I didn't have a relapsing-remitting version of multiple sclerosis, because I kept getting worse and worse without any textbook version of relapses or remissions, and I would get worse between the relapses. Plus I was told by the protege of Stanley van den Noort (a somewhat well known MS expert In the US who passed on in 2009) in 2006 that I was already SPMS, and that none of the current medications would help me. She turned out to be somewhat correct, though I did start Tysabri in 2010 for 24 months. But when I had to stop at the two year mark because my JCV titer was dangerously high, The recrudescence of the disease from going on a lower efficacy drug (Tecfidera) caused dramatically increased disability, which my neurologist had neglected to inform me was a possibility. Then at one point my neurologist classified me as progressive relapsing or relapsing progressive, whatever it's actually called. Then he went back to classifying it as relapsing remitting. Then as time went on I learned more and more about multiple sclerosis through my own research, Because my neurologist's explanations were too complicated for me to completely understand. So I had to learn more about biology, the brain and CNS, and multiple sclerosis. And everything went back and forth between three or four different variations of multiple sclerosis, to that it is just one disease with different facets.
Right now my neurologist is telling me that we should wait to see how tolebrutinib does this year, and meet in November to see if the results are favorable to me. But that is still far away with something still attacking my CNS. Also at this point I am completely unsure which medication would be helpful to me because I don't know where in the multiple sclerosis continuum I fall as classified. So I am unsure which drugs are for what as some are classified as for relapsing remitting disease and some are classified for progressive disease. Also by the time I figure out if something is not working for me it's too late to just switch to something else, because there is a waiting period to switch, and time is brain.
So you can see the confusion, and it's been like this for years for us with MS.
Prof G, i’ve always appreciated your treating MS as one disease. It may take what seems eons to get there, but perhaps we will prevail. Considering this disease kills, I find it ludicrous to classify treatment based on these labels. Many thanks for the good fight!
My only "complaint" is now that there are clinical trials for "progression" and being ineligible for those without a change of diagnosis. But of course staying on an existing (proven) treatment for as long as possible is preferable. But why not both???
I do appreciate that my own consultant seems to acknowledge MS as one condition, and that despite being dx 16 years ago and having worsening disability without relapses in recent years, he said to me I'll be on treatment for "about 20 more years" (until menopause)
I totally agree. My neuro was always reluctant to classify my MS stage for the seasons you state. The International Committee on Clinical Trials in MS tried to do something about this a few years ago, but I’m not aware of anything coming of it.
My wife is currently diagnosed as Primary Progressive (smouldering, no focal activity).
I have a couple questions
1. You said in another thread that you also employ sub cutaneous cladribine for such patients at your centre but only for your catchment area. Can this treatment be sought privately?
2. She is having another MRI tomorrow. If this happens to show focal activity for the first time since diagnosis what should happen next DMT wise and would that change the diagnosis?
Re; "She is having another MRI tomorrow. If this happens to show focal activity for the first time since diagnosis what should happen next DMT wise and would that change the diagnosis?"
She would be eligible for ocrelizumab (Ocrevus) with a label of PPMS. However, with a level of active MS she would have many more options.
And if the MRI shows no new lesions but she is deemed to have worsened is there anything else other than Cladribine? At the moment she isn’t offered anything.
Just my experience, but keep wetting your eyes. Even though our eyes act up, whether it is the muscles surrounding the eyes or ON, dry eyes can cause double vision and very much pain.
My experience is weirdly mixed and contributed to my decision to change hospital from Stoke Mandeville to Luton and Dunstable. Probably 6 years ago I asked my consultant if he thought my MS had become progressive. He said he didn't think about MS like that.
2 years later he sent me a letter following my appointment that said my diagnosis was SPMS. Hang on a minute, you told me , when I suggested it had become progressive, that you didn't think about it like that. This letter also had a EDSS value, I think 3 or 3.5. Sixth months on I saw him again, after failing to get any sense out of the new MS nurse, because it wasn't appropriate to discuss this over email. Argh!
He greeted with me with "So I'm seeing you early because you were upset that I put SPMS on the letter without mentioning it in the appointment. I must have been thinking about medication because I also put an EDSS on the letter. I don't normally put either, just MS. If a new medication for RRMS was available tomorrow,, I would call it RRMS."
I've mentioned before that for many reasons my relationship with him and his nurse had become untenable. I am very happy with the team at the L&D who treat me as an intelligent adult who wants to understand their illness. They did confirm my diagnosis with the SPMS label, but I'm ok with that at the moment. Maybe at some point in the future, I will be less content about it.
My expectation is that the Neurologist at the L&D will want to stick with the label SPMS. I can cope with that better than the idea of "I change the label when I need to". Personally, I have no problem understanding what is meant because relapse and progression in terms of MS. Nor do my friends and colleagues. If a bad thing progresses then it gets worse. Surely in general within the medical field remission is good and relapse is bad. I'm thinking about Cancer, remission is the aim of treatment.
Thank you. My doctor didn't want to write that I am SPMS (although clearly I am progressing with no relapses or MRI changes), and he said "Once we write SPMS, the ship has sailed, there is no coming back, and you will be limited to siponimod only".
I am glad that he thought that way, because I received Mavenclad ;-)
I believe personally, that if we have MS, then that's what it should be called. There's no need to label it as RRMS or SPMS, because there's no need to differentiate. Similarly there's no need to say you have 'active disease' because we should all be treated the same. One of the main reasons, is that those of us who have been told that we show no signs of active lesions at the time of their MRI, are made to feel that they are not as as bad as those who have active lesions, and therefore are denied a treatment. I think that however far we've come on our individual journey's, it should be called MS. I believe that too much of the research being done, is focused on the basis of 'what stage' we are at, whereas it should be focused on 'how far into our individual journey's we are, and how it affects our daily life. Then, if we're happy to try a treatment, we should be allowed to.
Totally agree. Had there been meds on my diagnosis I would have been offered a far better choice than I was when the first injectables came out. My lesions were bright and I had / have loss of axons. Black holes. I had all the injectables and Gilenya and had intolerable side effects. Put up with it for a decade. My ms had not had new lesions for years so it was clear where I was. The only SPMS drug is much same as Gilenya. So I was ok for it to be labelled SPMS. As I thought something might come about for this. I’m taking part in Octupus. So not a lost cause.
This impossible and out the hands of most people with MS. It is unlikely that a neurologist will listen to a patient and amend their diagnosis. This should not be made my responsibility. This only contributes to my feelings of hopelessness.
I think we should drop progression and relapse. Both confuse people. Relapse is most commonly used in terms of addiction etc and implies that you've gone back to how you have been before when in MS it means further, new disease activity. To confuse matters even more, we use 'flare' to mean what everyone else thinks we mean when we say 'relapse'. It's hard enough explaining MS as it is.
On the main point, I cannot imagine telling any consultant to change how they want to classify me and having that interaction go well! Also, at the moment it is a bit of a sausage machine in the UK - if we are all seen as having MS with varying percentages of each component, won't they have to make more nuanced decisions about treatment? Is there the capacity for that? I can see we'd get better patient outcomes if they did do it properly.
I agree that MS is one disease however there is a need to identify the newly diagnosed and also spread the message about smouldering MS.
Educating pharma is probably the most important because they really do want to test their drugs on people with RRMS or SPMS and everything will cascade down from there.
I suspect that the labels SPMS and RRMS will hang around for a long time. Is Smouldering MS an officially recognized diagnosis by the medical profession and is it a criteria that is used by anyone else,
Google does recognise it so that is a start
I WISH I could just have MS as the dx! I’m in the US, and for insurance reasons, I didn’t really have an option when I received the SPMS label. My insurance and government benefits determine more than just my DMT, unfortunately. In some ways, I’m fortunate to have the SPMS label, but Ocrevus was a disastrous experiment, from which I have yet to recover.
I’ve been labelled with SPMS. No new lesions on latest head and spinal MRI scans, but my MS is definitely getting worse. Tried Sipinomod but suffered chronic diarrhoea. So now not taking any DMT. Feel totally abandoned by my HCP.
I’ve now taken the tough decision to try Stem Cell treatment to try and stop the progression.
Prof G have you heard of Somata Genesis?
I have RRMS, my neurologist wouldn't consider reclassifying me as anything else.
I am keen to get on the frexalimab trial.
However - I had mavenclad. This means I can't get on the RRMS frexalimab trial.
If I had SPMS then I would be eligible for the SPMS frexalimab trial as a former mavenclad patient. But not the RRMS trial.
I don't think my neuro would consider some sort of diagnosis hokey-cokey and to be honest I wouldn't want to waste their time with it. But it does kinda raise the question - what exactly ARE the drug companies trying to test?
Very confusing.
I have no idea what's going on with me other than I keep losing ability fairly quickly, and I'm already all the way down to only able to use my index finger a little bit on my left hand and that's it. I can still move my head and shoulders, and sit in a wheelchair for many hours. But now there are many days where I have trouble holding my head up.
I wanted to take the second year of Mavenclad, but my neurologist warned me that that wouldn't be a good idea because of all of the UTIs I kept developing. But after all the information I've read on Mavenclad it doesn't seem that I would've been that severely immunocompromised to hurt me. And now I regret my decision because the damage since then is permanent now. I'm really worried about the future because it doesn't seem like any of the medications will help me, and it is still far away for the reparative therapies, if they even work. I have tried really hard for years to figure out this horrible disease, and to get the best help I could for managing and mitigating multiple sclerosis. It has been an uphill battle the whole time.
I am pretty confused now... for years I kept arguing with my neurologist that I didn't have a relapsing-remitting version of multiple sclerosis, because I kept getting worse and worse without any textbook version of relapses or remissions, and I would get worse between the relapses. Plus I was told by the protege of Stanley van den Noort (a somewhat well known MS expert In the US who passed on in 2009) in 2006 that I was already SPMS, and that none of the current medications would help me. She turned out to be somewhat correct, though I did start Tysabri in 2010 for 24 months. But when I had to stop at the two year mark because my JCV titer was dangerously high, The recrudescence of the disease from going on a lower efficacy drug (Tecfidera) caused dramatically increased disability, which my neurologist had neglected to inform me was a possibility. Then at one point my neurologist classified me as progressive relapsing or relapsing progressive, whatever it's actually called. Then he went back to classifying it as relapsing remitting. Then as time went on I learned more and more about multiple sclerosis through my own research, Because my neurologist's explanations were too complicated for me to completely understand. So I had to learn more about biology, the brain and CNS, and multiple sclerosis. And everything went back and forth between three or four different variations of multiple sclerosis, to that it is just one disease with different facets.
Right now my neurologist is telling me that we should wait to see how tolebrutinib does this year, and meet in November to see if the results are favorable to me. But that is still far away with something still attacking my CNS. Also at this point I am completely unsure which medication would be helpful to me because I don't know where in the multiple sclerosis continuum I fall as classified. So I am unsure which drugs are for what as some are classified as for relapsing remitting disease and some are classified for progressive disease. Also by the time I figure out if something is not working for me it's too late to just switch to something else, because there is a waiting period to switch, and time is brain.
So you can see the confusion, and it's been like this for years for us with MS.
Absolutely unacceptable that you are being treated so apathetically… I’m so sorry your neurologist isn’t being more proactive.
Prof G, i’ve always appreciated your treating MS as one disease. It may take what seems eons to get there, but perhaps we will prevail. Considering this disease kills, I find it ludicrous to classify treatment based on these labels. Many thanks for the good fight!
My only "complaint" is now that there are clinical trials for "progression" and being ineligible for those without a change of diagnosis. But of course staying on an existing (proven) treatment for as long as possible is preferable. But why not both???
I do appreciate that my own consultant seems to acknowledge MS as one condition, and that despite being dx 16 years ago and having worsening disability without relapses in recent years, he said to me I'll be on treatment for "about 20 more years" (until menopause)
I totally agree. My neuro was always reluctant to classify my MS stage for the seasons you state. The International Committee on Clinical Trials in MS tried to do something about this a few years ago, but I’m not aware of anything coming of it.
https://themswire.com/does-it-matter-what-your-ms-is-called/
Will Tolebrutinib be prescribed for RRMS in the UK?
I sincerely hope so. But I suspect the regulators will stick to the 4 disease worldview of MS and license it for non-relapsing or inactive SPMS :-(
It may get a license for PPMS if the PPMS trial is positive.
Hence the dilemma for some of us...
I didn't realise there is/was a Tolebrutinib trial for PPMS....
My wife is currently diagnosed as Primary Progressive (smouldering, no focal activity).
I have a couple questions
1. You said in another thread that you also employ sub cutaneous cladribine for such patients at your centre but only for your catchment area. Can this treatment be sought privately?
2. She is having another MRI tomorrow. If this happens to show focal activity for the first time since diagnosis what should happen next DMT wise and would that change the diagnosis?
Re; "She is having another MRI tomorrow. If this happens to show focal activity for the first time since diagnosis what should happen next DMT wise and would that change the diagnosis?"
She would be eligible for ocrelizumab (Ocrevus) with a label of PPMS. However, with a level of active MS she would have many more options.
Thanks Prof G
Re: "Can this treatment be sought privately?"
No, I am not aware of it being offered privately.
And if the MRI shows no new lesions but she is deemed to have worsened is there anything else other than Cladribine? At the moment she isn’t offered anything.
You will need to consult with her neurologist and other healthcare providers.
Easier said than done. She hasn’t had one consultation since diagnosis 4 years ago. Pw PPMS seemly left to rot evidently.
She is only getting an MRI because she is taking part in the Octopus trial.
Can dry eye actually but and worsen vision if left u touched
Just my experience, but keep wetting your eyes. Even though our eyes act up, whether it is the muscles surrounding the eyes or ON, dry eyes can cause double vision and very much pain.
My experience is weirdly mixed and contributed to my decision to change hospital from Stoke Mandeville to Luton and Dunstable. Probably 6 years ago I asked my consultant if he thought my MS had become progressive. He said he didn't think about MS like that.
2 years later he sent me a letter following my appointment that said my diagnosis was SPMS. Hang on a minute, you told me , when I suggested it had become progressive, that you didn't think about it like that. This letter also had a EDSS value, I think 3 or 3.5. Sixth months on I saw him again, after failing to get any sense out of the new MS nurse, because it wasn't appropriate to discuss this over email. Argh!
He greeted with me with "So I'm seeing you early because you were upset that I put SPMS on the letter without mentioning it in the appointment. I must have been thinking about medication because I also put an EDSS on the letter. I don't normally put either, just MS. If a new medication for RRMS was available tomorrow,, I would call it RRMS."
I've mentioned before that for many reasons my relationship with him and his nurse had become untenable. I am very happy with the team at the L&D who treat me as an intelligent adult who wants to understand their illness. They did confirm my diagnosis with the SPMS label, but I'm ok with that at the moment. Maybe at some point in the future, I will be less content about it.
My expectation is that the Neurologist at the L&D will want to stick with the label SPMS. I can cope with that better than the idea of "I change the label when I need to". Personally, I have no problem understanding what is meant because relapse and progression in terms of MS. Nor do my friends and colleagues. If a bad thing progresses then it gets worse. Surely in general within the medical field remission is good and relapse is bad. I'm thinking about Cancer, remission is the aim of treatment.