This patient wants to go beyond no inflammatory disease activity and does not want to be immunosuppressed long-term. Should he have HSCT or will alemtuzumab achieve what he wants?
I am reading this now as I came onto the MS-Selfie to search for "HSCT and Ocrelizumab", this post popped immediately up! I am reading Dr. Richard Burt's book "Everyday Miracles" and also just listened to a recent podcast from the OMS charity's Living Well with MS podcast. The more I read, the more I am concerned I should be doing more!
I have been on ocrelizumab since diagnosis in 2018. I believe I am doing well - take an integrative approach to living with MS (medication, exercise, nutrition, sleep, VitD, no smoking, meditation, stress reduction); however, after learning more and more about long term immune suppression and progression of MS without lesions while on ocrelizumab....well, I'm simply overwhelmed. I suspect others reading the book are in a similar place as me..
Ironically, at diagnosis - the inpatient neurologist (in the ER) mentioned stem cell transplant to me then. I didn't understand anything at that point - was simply totally lost. I went on to an MS Specialist who immediately recommended Ocrevus. I can't help but think maybe I should have followed up back then.
But.....coulda, shoulda, woulda is not helpful....so, it's onwards! What should I do now? Any recommendations for best educationing (sic) on it all? I am absolutely going to be discussing this with my MS Neuro.
thank you for every single thing about this MS-Selfie - it's improved and improved and improved!
Having received alemtuzumab as a first line treatment (1st round 2017) I am now facing a decision as to whether to do HSCT or receive ofatumumab. HSCT would be my preferred option because I don’t want to be long term immune suppressed. My only concern though is how effective it will be for me given that alemtuzumab has not stopped disease activity. I would be grateful for your view
If the case for escalation (alemtuzumab) for this patient rests on evidence of inflammatory activity, is MRI or NF the only hard 'evidence'. For instance, i document mild relapses with my nurse - they qualify under the criteria of new or recurrent symptoms lasting more than 24 hours but are not always confirmed as lesions on subsequent MRI scans. Would this be sufficient 'evidence' the danger as i'm sure you know is that it relies on patient trust as i'm sure there are some patients that would fabricate relapses in these circumstances
Dear professor, You talk about non-specific IRTs (HSCT & Alemtuzumab) having an edge over the therapies that target B cells, but in your opinion, how would the investigational BTK inhibitors compare to Cladribine, in terms of efficacy? Would combining a BTKI with some anti CD 20 therapy be more effective than a BTKI alone?
Have not idea how a BTKi will compare as we have no phase 3 data yet. No, I wouldn't combine a BTKi with an anti-CD20 as these two target the same cell. BTKi may have an advantage over an anti-CD20 because it may inhibit microglia.
It is not in the same league as alemtuzumab or HSCT in terms of its impact on BVL in established MS. It is a potential option, what the German's like to refer to as alemtuzumab-light.
About the bands-So just to clarify, pwms that have oligoclonal immunoglobulin bands in the CSF initaially can lose those bands? Is that what you mean by "lost the bands".
In untreated pwMS the bands persist. Thy hypothesis is that they are reacting to something in the brain of pwMS and are driving worsening disability or smouldering MS.
That is very similar to the decision which I'm making for myself now (except that I live in the US, and health insurance treatment rules are even more broken than NHS ones). I do have a question, though: if he said Moscow HSCT, he's probably talking about Dr Fedorenko's treatment, which is almost always non-myeloablative. Does that make any difference to your thinking? It's still lymphoablative, of course, so still not much point in washing out the anti-CD20 treatment, but it seems kind of important for evaluating the risk/benefit trade-off.
Steven, the debate between myeloablative and non-ablative rages on. I think the issues are the same, whichever protocol you choose. As you are aware the risks are higher with the ablative protocol, but so are the potential benefits.
Not sure there is all that much choice to begin with. The commercial options abroad seem to be all non-myeloablative (seems obvious why) and the 'regular' centers - if that is available to the patient at all - seem to do whatever regime *they* prefer.
Personally. the thought of flying home after ablation in covid times makes the abroad option untenable.
I am reading this now as I came onto the MS-Selfie to search for "HSCT and Ocrelizumab", this post popped immediately up! I am reading Dr. Richard Burt's book "Everyday Miracles" and also just listened to a recent podcast from the OMS charity's Living Well with MS podcast. The more I read, the more I am concerned I should be doing more!
I have been on ocrelizumab since diagnosis in 2018. I believe I am doing well - take an integrative approach to living with MS (medication, exercise, nutrition, sleep, VitD, no smoking, meditation, stress reduction); however, after learning more and more about long term immune suppression and progression of MS without lesions while on ocrelizumab....well, I'm simply overwhelmed. I suspect others reading the book are in a similar place as me..
Ironically, at diagnosis - the inpatient neurologist (in the ER) mentioned stem cell transplant to me then. I didn't understand anything at that point - was simply totally lost. I went on to an MS Specialist who immediately recommended Ocrevus. I can't help but think maybe I should have followed up back then.
But.....coulda, shoulda, woulda is not helpful....so, it's onwards! What should I do now? Any recommendations for best educationing (sic) on it all? I am absolutely going to be discussing this with my MS Neuro.
thank you for every single thing about this MS-Selfie - it's improved and improved and improved!
Having received alemtuzumab as a first line treatment (1st round 2017) I am now facing a decision as to whether to do HSCT or receive ofatumumab. HSCT would be my preferred option because I don’t want to be long term immune suppressed. My only concern though is how effective it will be for me given that alemtuzumab has not stopped disease activity. I would be grateful for your view
If the case for escalation (alemtuzumab) for this patient rests on evidence of inflammatory activity, is MRI or NF the only hard 'evidence'. For instance, i document mild relapses with my nurse - they qualify under the criteria of new or recurrent symptoms lasting more than 24 hours but are not always confirmed as lesions on subsequent MRI scans. Would this be sufficient 'evidence' the danger as i'm sure you know is that it relies on patient trust as i'm sure there are some patients that would fabricate relapses in these circumstances
Dear professor, You talk about non-specific IRTs (HSCT & Alemtuzumab) having an edge over the therapies that target B cells, but in your opinion, how would the investigational BTK inhibitors compare to Cladribine, in terms of efficacy? Would combining a BTKI with some anti CD 20 therapy be more effective than a BTKI alone?
Kind regards.
Have not idea how a BTKi will compare as we have no phase 3 data yet. No, I wouldn't combine a BTKi with an anti-CD20 as these two target the same cell. BTKi may have an advantage over an anti-CD20 because it may inhibit microglia.
You don't mention cladribine as an option for this patient?
It is not in the same league as alemtuzumab or HSCT in terms of its impact on BVL in established MS. It is a potential option, what the German's like to refer to as alemtuzumab-light.
About the bands-So just to clarify, pwms that have oligoclonal immunoglobulin bands in the CSF initaially can lose those bands? Is that what you mean by "lost the bands".
In untreated pwMS the bands persist. Thy hypothesis is that they are reacting to something in the brain of pwMS and are driving worsening disability or smouldering MS.
That is very similar to the decision which I'm making for myself now (except that I live in the US, and health insurance treatment rules are even more broken than NHS ones). I do have a question, though: if he said Moscow HSCT, he's probably talking about Dr Fedorenko's treatment, which is almost always non-myeloablative. Does that make any difference to your thinking? It's still lymphoablative, of course, so still not much point in washing out the anti-CD20 treatment, but it seems kind of important for evaluating the risk/benefit trade-off.
Steven, the debate between myeloablative and non-ablative rages on. I think the issues are the same, whichever protocol you choose. As you are aware the risks are higher with the ablative protocol, but so are the potential benefits.
Not sure there is all that much choice to begin with. The commercial options abroad seem to be all non-myeloablative (seems obvious why) and the 'regular' centers - if that is available to the patient at all - seem to do whatever regime *they* prefer.
Personally. the thought of flying home after ablation in covid times makes the abroad option untenable.