A list of questions from a neurologist on how to deal with lymphopaenia and MS DMTs that I try to answer. They are all very interesting and challenging.
Lots of mind blowers in this one! I didn't realize the PML carryover risk from Natalizumab was well understood, among others.
So my question: I am on fingolimod and get 6-monthly labs and my doc says they are in a healthy range. But seeking COVID data on fingolimod, there have been a few papers where patients are split out by their lymphoctye counts, and I have discovered (I think) that mine are on the lower end of expected-with-fingolimod. Does this mean anything? (just being low-even-for-fingolimod, not my particular value) Is it suspected to mean anything? Or just interpersonal variation?
I also wonder about the 'cumulative' risk of lymphopaenia when switching from one DMT to another - or, in my case, on my 4th DMT. After severe prolonged lymphopaenia on my 3rd DMT, I decided to quit DMTs for 8 months, and let my ALC recover, before starting my 4th DMT. I know that's a risk, but I think starting a new DMT when your ALC (and CD8 T) is still very low, is also risky... I would be interested to know if there is literature/data/guidelines on this topic.
Lots of mind blowers in this one! I didn't realize the PML carryover risk from Natalizumab was well understood, among others.
So my question: I am on fingolimod and get 6-monthly labs and my doc says they are in a healthy range. But seeking COVID data on fingolimod, there have been a few papers where patients are split out by their lymphoctye counts, and I have discovered (I think) that mine are on the lower end of expected-with-fingolimod. Does this mean anything? (just being low-even-for-fingolimod, not my particular value) Is it suspected to mean anything? Or just interpersonal variation?
Is there reliable data on the persistence of lymphopaenia after discontinuation of the various DMTs?
I refer to e.g. https://journals.sagepub.com/doi/abs/10.1177/1352458520988149 - a lot of the DMTs discussed are relatively recent, or in any case more recent than DMF.
I also wonder about the 'cumulative' risk of lymphopaenia when switching from one DMT to another - or, in my case, on my 4th DMT. After severe prolonged lymphopaenia on my 3rd DMT, I decided to quit DMTs for 8 months, and let my ALC recover, before starting my 4th DMT. I know that's a risk, but I think starting a new DMT when your ALC (and CD8 T) is still very low, is also risky... I would be interested to know if there is literature/data/guidelines on this topic.
I didn’t realize that DMTs could imprint on the immune system! All so complicated, and if you don’t have an MS specialist…
Off topic: How do you pose a query to the substack?
My queries:
Do patients on Anti-CD20 or Fingolimod mount a durable immune memory to SARS-Cov-2 disease (not vaccinated) while on treatment?
For patients using Rituximab long term do they have a better chance to create memory cells closer to (or slightly past) their 6 month reinfusion date?
Do you have an opinion on the FLCCC protocols- especially prevention or early treatment guidelines?
Much appreciated,
Felicity