I know a few patients who have shown further progression (without MRI activity) after having aHSCT therapy. Is this a case of "smouldering MS" and would further treatment would you consider?
Dont if you konw but there is EBMT and they have Autoimmune Diseases Working Party every year the update their recomendatios for auto immune diseases (also ms)
Implications of immune monitoring for clinical practice: recommendations for infection prophylaxis and re-vaccination
This text as manny incorrect statements i am gonna pic just one
So you mention myeloablative regime
This is why you have to be revaccinated with all your childhood vaccines ~2 years after AHSCT to restore your immune responses to these common infections. Please note that not all BMT units demand revaccination; it depends on how ablative your HSCT is
So this study is the mosstttt intensive regime ever myeloablative and total body irradiation (8 Gy)
(TBI)
Guess what it did not clear previous vaccinations
Antibodies
Even though B cell and CD4 T cell counts were very low in the first 3 months posttransplant, median serum levels of total IgM, IgA, IgG, IgG2 as well as IgG specific for tetanus toxoid, H. influenzae, and S. pneumoniae remained normal (Fig. 4). ~
I understood his response to align with that? From what you've said it would have to be a highly ablative chemo to do this?
As to HSCT v alemtuzumab, depends on chemo used by HSCT. Perhaps it would be better to stop saying HSCT and call it x,y,z chemo instead?
STAR-MS sounds well worth doing. It strikes me that many potential participants may not even be diagnosed yet, yet alone reading MS blogs and news!
Re no autoimmunity post HSCT, fairly sure I've read that rituximab used routinely afterwards in clinics abroad 'to clear the last of the B cells'? So hardly a level playing field.
I am 40, female, I'm in the Republic of Ireland, I have had HARRMS for 7 years and am on my fifth DMT in that time. Copaxone, tecfidera, tysabri all failed. Lemtrada, whilst effective, cost me my thyroid gland and I started to relapse after it. I am now on ocrelizumab but am relapsing. My neurologist has referred me for AHSCT in London and I am provisionally accepted. I am having an MRI tomorrow morning to check for new lesions as I have new neurological symptoms. Will my referral only be accepted if I have new MRI activity? I have a 15 year old daughter and don't want any more children so the menopause aspect isn't such an issue for me, I'm more worried about how long I'd be away from home! I spent 18 weeks in hospital after a severe relapse and that was hard, even though I was in hospital in Ireland and it was pre-covid and could have visitors. The thing that puts me off is being away from my daughter and family for a long time.
Thanks for these reflections on AHSCT. You wrote: "... more pwMS have a recurrence of their disease activity after non-myeloablative AHSCT, when compared to ablative-AHSCT". Is there any source for this observation? What I've read in papers is that both protocols can achieve NEDA at circa 70 % of RRMS patients for 5+ years.
Excellent overview of HSCT. I have PPMS am 45 and have thought about it but am too worried about dying and leaving 3 girls and my wife. From what I read it is less likely to work for me and it seems like I would be borderline to get it on the NHS. The only people I know who have had it it hasn't really worked for them. One thing I would consider if I won the lottery is going to Panama (https://www.cellmedicine.com/) and having allogeneic human umbilical cord stem cells/ autologous bone marrow stem cells. I know there is an argument that no chemo it doesn't work but I would be interested on your thoughts on this other way. It seems like with this way you ideally have to go back a few times which makes it prohibitive even if you did a one off mega splurge.
Where can one actually go to have myeloablative HSCT done? As far as I can tell all the private clinics offering it are doing non-myeloablative protocols. Is myeloablative available through the NHS?
Hello,
I know a few patients who have shown further progression (without MRI activity) after having aHSCT therapy. Is this a case of "smouldering MS" and would further treatment would you consider?
What happens to viruses that are already living in your bloodstream after AHSCT? Herpes, chickenpox, JCV, EBV, etc.
Dont if you konw but there is EBMT and they have Autoimmune Diseases Working Party every year the update their recomendatios for auto immune diseases (also ms)
Implications of immune monitoring for clinical practice: recommendations for infection prophylaxis and re-vaccination
https://www.nature.com/articles/bmt2014251
Most of the peoples are maven just like you
You may know some of them
Paolo muraro
J A Snowden
R Saccardi
M Kazmi
Arnold atkins
Dominique farge
etc
This text as manny incorrect statements i am gonna pic just one
So you mention myeloablative regime
This is why you have to be revaccinated with all your childhood vaccines ~2 years after AHSCT to restore your immune responses to these common infections. Please note that not all BMT units demand revaccination; it depends on how ablative your HSCT is
So this study is the mosstttt intensive regime ever myeloablative and total body irradiation (8 Gy)
(TBI)
Guess what it did not clear previous vaccinations
Antibodies
Even though B cell and CD4 T cell counts were very low in the first 3 months posttransplant, median serum levels of total IgM, IgA, IgG, IgG2 as well as IgG specific for tetanus toxoid, H. influenzae, and S. pneumoniae remained normal (Fig. 4). ~
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2956741/
Recovery from and consequences of severe iatrogenic lymphopenia (induced to treat autoimmune diseases)
Thank you for this topical newsletter. I think what attracts people to try HSCT is the 'reboot of faulty immune system' idea?
When the MS Trust interviewed Prof Basil Sharrack recently
https://mstrust.org.uk/news/ask-expert-stem-cell-transplantation
I understood his response to align with that? From what you've said it would have to be a highly ablative chemo to do this?
As to HSCT v alemtuzumab, depends on chemo used by HSCT. Perhaps it would be better to stop saying HSCT and call it x,y,z chemo instead?
STAR-MS sounds well worth doing. It strikes me that many potential participants may not even be diagnosed yet, yet alone reading MS blogs and news!
Re no autoimmunity post HSCT, fairly sure I've read that rituximab used routinely afterwards in clinics abroad 'to clear the last of the B cells'? So hardly a level playing field.
I am 40, female, I'm in the Republic of Ireland, I have had HARRMS for 7 years and am on my fifth DMT in that time. Copaxone, tecfidera, tysabri all failed. Lemtrada, whilst effective, cost me my thyroid gland and I started to relapse after it. I am now on ocrelizumab but am relapsing. My neurologist has referred me for AHSCT in London and I am provisionally accepted. I am having an MRI tomorrow morning to check for new lesions as I have new neurological symptoms. Will my referral only be accepted if I have new MRI activity? I have a 15 year old daughter and don't want any more children so the menopause aspect isn't such an issue for me, I'm more worried about how long I'd be away from home! I spent 18 weeks in hospital after a severe relapse and that was hard, even though I was in hospital in Ireland and it was pre-covid and could have visitors. The thing that puts me off is being away from my daughter and family for a long time.
Refreshingly honest
I had no idea the infertility risk was so high. This means HSCT will never become mainstream and is likely to remain a rescue treatment.
Thanks for these reflections on AHSCT. You wrote: "... more pwMS have a recurrence of their disease activity after non-myeloablative AHSCT, when compared to ablative-AHSCT". Is there any source for this observation? What I've read in papers is that both protocols can achieve NEDA at circa 70 % of RRMS patients for 5+ years.
What are your thoughts on Mesenchymal stem cell therapy to treat MS? Is the research ongoing or going nowhere?
Excellent overview of HSCT. I have PPMS am 45 and have thought about it but am too worried about dying and leaving 3 girls and my wife. From what I read it is less likely to work for me and it seems like I would be borderline to get it on the NHS. The only people I know who have had it it hasn't really worked for them. One thing I would consider if I won the lottery is going to Panama (https://www.cellmedicine.com/) and having allogeneic human umbilical cord stem cells/ autologous bone marrow stem cells. I know there is an argument that no chemo it doesn't work but I would be interested on your thoughts on this other way. It seems like with this way you ideally have to go back a few times which makes it prohibitive even if you did a one off mega splurge.
Sizomus, STAT-2, Octopus, etc ...
Where can one actually go to have myeloablative HSCT done? As far as I can tell all the private clinics offering it are doing non-myeloablative protocols. Is myeloablative available through the NHS?