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 !
Yes, we are having a meeting about how to educate the wider MS community, including HCPs, about AHSCT and how to widen access appropriately. There is also a review article targeting MSologists and neurologists about AHSCT in MS.
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.
I suggest you read my Newsletter about active vs. inactive MS. It may help, but you are asking the most important question in MS. When is MS active or inactive? Is it a black and white question? I suspect not and this will be an ongoing debate for some time to come.
Thank you. It does feel rather uncanny and bass-ackwards how the available, cost-assessed treatments seem to slightly be inventing the disease one is suffering. (Not immediately relevant but thinking of the philosopher of science and psychology Ian Hacking, though I've never read him writing about medicine beyond psychiatry. But his attempt to analyse the social and political 'looping effects' that feed in and out of material science feel like they might throw a useful perspective on MS. We will all of us be suffering from a different disease if the science shifts again, as presumably it will.)
It depends on the DMT and the patient. Ideally, we like this to be with 4 weeks and it can be this quick or even quicker with immunomodulatory treatment. However, for immunosuppressive therapies, we need an infection screen and vaccine review. With anti-CD20 therapies waiting for pneumococcal vaccination and immune response can take 6-8 weeks and longer. If someone has very active MS we have in the past started someone on natalizumab within 3 days of admission to hospital with a relapse.
More importantly, it can take many months for patients to be ready to accept the diagnosis of MS and be willing to start a 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.
Do you live in the UK? If yes, you should show your HCPs the NHSE algorithm. Both ocrelizumab and ofatumumab are licensed for active MS and can therefore be offered as first-line therapies.
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?
Re: "Is there a Royal College of Neurologists and do they stray into this territory?"
They are called the Association of British Neurologists and they formulated the stopping criteria way back in 2007.
https://wordpress.com/post/ms-selfie.blog/225
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 !
Yes, we are having a meeting about how to educate the wider MS community, including HCPs, about AHSCT and how to widen access appropriately. There is also a review article targeting MSologists and neurologists about AHSCT in MS.
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.
I suggest you read my Newsletter about active vs. inactive MS. It may help, but you are asking the most important question in MS. When is MS active or inactive? Is it a black and white question? I suspect not and this will be an ongoing debate for some time to come.
https://gavingiovannoni.substack.com/p/do-i-have-active-ms
Thank you. It does feel rather uncanny and bass-ackwards how the available, cost-assessed treatments seem to slightly be inventing the disease one is suffering. (Not immediately relevant but thinking of the philosopher of science and psychology Ian Hacking, though I've never read him writing about medicine beyond psychiatry. But his attempt to analyse the social and political 'looping effects' that feed in and out of material science feel like they might throw a useful perspective on MS. We will all of us be suffering from a different disease if the science shifts again, as presumably it will.)
Is there any guidance on appropriate timescales from approval for a DMT to commencing the DMT?
It depends on the DMT and the patient. Ideally, we like this to be with 4 weeks and it can be this quick or even quicker with immunomodulatory treatment. However, for immunosuppressive therapies, we need an infection screen and vaccine review. With anti-CD20 therapies waiting for pneumococcal vaccination and immune response can take 6-8 weeks and longer. If someone has very active MS we have in the past started someone on natalizumab within 3 days of admission to hospital with a relapse.
More importantly, it can take many months for patients to be ready to accept the diagnosis of MS and be willing to start a 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.
Do you live in the UK? If yes, you should show your HCPs the NHSE algorithm. Both ocrelizumab and ofatumumab are licensed for active MS and can therefore be offered as first-line therapies.
Yes, I do live in the UK. In Bristol. I will do that. Thanks.