Yes, I do agree! After 41 years with MS, I am still ambulatory, have yearly MRI's, and for the past 15 years or so have been SPMS inactive. Although inactive, my overall condition and symptoms have worsened. I was on a DMT until I got the diagnosis of SPMS, and both my Neurologist and the MS Center advised stopping, as it " would not help anymore." I can certainly tell that MY MS has accelerated and worsened since I stopped taking a DMT. When I ask " If the MS is inactive, why am I getting so much worse, and so quickly?", the answer is always something about residual damage and the 200+ lesions I have on my brain, brain stem and spinal cord. At this point, I think the patient should have a strong voice in whether they should be eligible for MS therapies, along with healthcare professionals. I have NO trust in the regulators, the professional societies are good at what they don, but shouldn't prescribe, and I am totally fed up with Insurance Companies telling me and my Doctor what I can and cannot take! It should NEVER be up to them! I would love to be in one of the trials for rebuilding myelin or something like that. and no one should ever be excluded from anything because of a LABEL, especially one that SOMEBODY ELSE put on them, and wrote their own definition. Thank you, I feel as though I have been venting, and perhaps I needed to. I believe the whole process needs to be challenged, and I agree with Kit on one point. I have no legal background, but after almost 43 years, I am an expert on MS.
A very important Selfie. I think the average pwMS (without a medical or research background) should view the DMT landscape as having a sweet spot, i.e. if s/he has active MS and is ambulant, there may be a DMT available. If it's inactive RRMS, no treatment. If a wheelchair user, same. It's a tough call for most pwMS if they done't fall between these criteria.. This needs to be challenged, which you say the National Association of Neurologists are doing. The analogy is with the British legislative process, whereby, if a new law is enacted which restricts or disadvantages people not yet in possession of some sort of exclusion format, those already holding such a position are not always restrospectively penalised, just the new cohort.
If a wheelchair user was on a DMT when ambulant, their eligibility ceases as the enter EDSS 6 and so on to >6. You have explained why; lack of wheelchair participants in RTC research etc. So there's a logic as to why they cease to be eligible, but it must seem beyond cruel to them. It's certainly inhumane ,if logical. One wonders if even in the absence of trials which include them, it could not be challenged in other ways, as a form of neglect or on some such criteria. I may be way off beam here, but, while I have no medical or legal background, I just find the whole framework immoral and harsh.
Question. Is there a Royal College of Neurologists and do they stray into this territory? If not? Why not?
Having MS diagnosed 30 years ago, now a wheelchair user, I fully agree that we/I should be treated with DMTs. Anything to slow deterioration of cognitive and upper body function. Just because I can’t walk doesn’t mean I’m not worth treating. Im very much aware what’s happening and will do whatever it takes to maintain what little I have left. Thank you as always Prof G.
I was diagnosed in may 2020 with ms after 24 grams of pulsed steroids (not a typo) later and failing tysabri and multiple hosptilisations in the last 18 months i have finally started hsct at barts this week. My local neueo only offered interferon beta or other injectables, luckily i dont live with my head in the clouds and do my own research. Where is the break down in communication between the nhs, mhra and nice that led the local neuro to believe i would not be eligable? And do you think further funding of local trusts or education would stop this issue re occuring for others ?
Also what a fantastic hospital barts is! Absolutely amazing ! The staff are some of the friendliest and most helpful i have ever met !
100% agree. I’m a full time wheelchair user, having had MS for 25 years. Classed as Progressive Relapsing I don’t qualify for DMTs due to EDSS and length of disease. A therapy to prevent further deterioration of upper limb, cognitive and bulbar functions would be welcome. Trials of DMTs should definitely be conducted with wheelchair users.
As someone aware my MS is getting gradually worse but not showing new lesions, so therefore not 'active' enough any more to qualify for a DMT, I have been asking myself: how accelerated would brain atrophy showing on an annual MRI have to be - in the absence of detectable fresh sclerosis and official relapses – before it would stop being possible to call the MS inactive?
That may be the wrong question to ask, but even if you would tell me that's a red herring, I would be grateful to know. Thank you.
Interesting, I have active MS but have been told ocrelizumab is only available for those with highly active MS. Will progression ever be considered for drug eligibility? I have had MS for nearly 20 years and my cognitive impairment and fatigue have been gradually getting worse.
Yes, I do agree! After 41 years with MS, I am still ambulatory, have yearly MRI's, and for the past 15 years or so have been SPMS inactive. Although inactive, my overall condition and symptoms have worsened. I was on a DMT until I got the diagnosis of SPMS, and both my Neurologist and the MS Center advised stopping, as it " would not help anymore." I can certainly tell that MY MS has accelerated and worsened since I stopped taking a DMT. When I ask " If the MS is inactive, why am I getting so much worse, and so quickly?", the answer is always something about residual damage and the 200+ lesions I have on my brain, brain stem and spinal cord. At this point, I think the patient should have a strong voice in whether they should be eligible for MS therapies, along with healthcare professionals. I have NO trust in the regulators, the professional societies are good at what they don, but shouldn't prescribe, and I am totally fed up with Insurance Companies telling me and my Doctor what I can and cannot take! It should NEVER be up to them! I would love to be in one of the trials for rebuilding myelin or something like that. and no one should ever be excluded from anything because of a LABEL, especially one that SOMEBODY ELSE put on them, and wrote their own definition. Thank you, I feel as though I have been venting, and perhaps I needed to. I believe the whole process needs to be challenged, and I agree with Kit on one point. I have no legal background, but after almost 43 years, I am an expert on MS.
A very important Selfie. I think the average pwMS (without a medical or research background) should view the DMT landscape as having a sweet spot, i.e. if s/he has active MS and is ambulant, there may be a DMT available. If it's inactive RRMS, no treatment. If a wheelchair user, same. It's a tough call for most pwMS if they done't fall between these criteria.. This needs to be challenged, which you say the National Association of Neurologists are doing. The analogy is with the British legislative process, whereby, if a new law is enacted which restricts or disadvantages people not yet in possession of some sort of exclusion format, those already holding such a position are not always restrospectively penalised, just the new cohort.
If a wheelchair user was on a DMT when ambulant, their eligibility ceases as the enter EDSS 6 and so on to >6. You have explained why; lack of wheelchair participants in RTC research etc. So there's a logic as to why they cease to be eligible, but it must seem beyond cruel to them. It's certainly inhumane ,if logical. One wonders if even in the absence of trials which include them, it could not be challenged in other ways, as a form of neglect or on some such criteria. I may be way off beam here, but, while I have no medical or legal background, I just find the whole framework immoral and harsh.
Question. Is there a Royal College of Neurologists and do they stray into this territory? If not? Why not?
Having MS diagnosed 30 years ago, now a wheelchair user, I fully agree that we/I should be treated with DMTs. Anything to slow deterioration of cognitive and upper body function. Just because I can’t walk doesn’t mean I’m not worth treating. Im very much aware what’s happening and will do whatever it takes to maintain what little I have left. Thank you as always Prof G.
I was diagnosed in may 2020 with ms after 24 grams of pulsed steroids (not a typo) later and failing tysabri and multiple hosptilisations in the last 18 months i have finally started hsct at barts this week. My local neueo only offered interferon beta or other injectables, luckily i dont live with my head in the clouds and do my own research. Where is the break down in communication between the nhs, mhra and nice that led the local neuro to believe i would not be eligable? And do you think further funding of local trusts or education would stop this issue re occuring for others ?
Also what a fantastic hospital barts is! Absolutely amazing ! The staff are some of the friendliest and most helpful i have ever met !
100% agree. I’m a full time wheelchair user, having had MS for 25 years. Classed as Progressive Relapsing I don’t qualify for DMTs due to EDSS and length of disease. A therapy to prevent further deterioration of upper limb, cognitive and bulbar functions would be welcome. Trials of DMTs should definitely be conducted with wheelchair users.
As someone aware my MS is getting gradually worse but not showing new lesions, so therefore not 'active' enough any more to qualify for a DMT, I have been asking myself: how accelerated would brain atrophy showing on an annual MRI have to be - in the absence of detectable fresh sclerosis and official relapses – before it would stop being possible to call the MS inactive?
That may be the wrong question to ask, but even if you would tell me that's a red herring, I would be grateful to know. Thank you.
Is there any guidance on appropriate timescales from approval for a DMT to commencing the DMT?
Interesting, I have active MS but have been told ocrelizumab is only available for those with highly active MS. Will progression ever be considered for drug eligibility? I have had MS for nearly 20 years and my cognitive impairment and fatigue have been gradually getting worse.