especially based on the claims that were made around the recovery regarding WBC and cytokines.
Maybe interesting to focus on this point: ‘The woman who took Rinvoq stopped it because her
white blood cells (WBC) dropped to dangerously low levels. 8 weeks after stopping, her white blood cell numbers had returned to normal and she felt better.’
(A) Would be interesting to know what exactly they measured as low WBC marker ??
-
neutrophils ?
- or more ?
Maybe that gives us some more answers
Also in light of Prof Edwards comments on low WBC (which might be nonsense).
@ John Edwards
The white cells in this case would be neutrophils. Having low B cells is not considered dangerous - nobody even bothers to measure them normally and you can manage without them for five years at least (we discovered). Neutrophils carry no individual memory so getting rid of them and getting new ones makes no difference.
On the other hand a sudden drop in neutrophils probably indicates some form of auto reactive bone marrow process knocking out the myeloid precursor lineage. That auto reactive process might engage a range of new signals that could conceivably break some pre-existing signal cycle. My main thought is that this would almost certainly have nothing to do with the original intended kinase blockade.
NB A drop in neutrophil count isn't really immune suppression as normally understood. ME/CFS is not going to be due to an overactive neutrophil response.
Adding a simplified explanation Theory of John Edwards (thanks to Chat GTP) :
“When your neutrophil count suddenly drops, it could mean something is affecting the bone marrow, where these cells are made. There might be an attack targeting the myeloid precursor lineage, = group of cells in the bone marrow that eventually become neutrophils and other types of white blood cells. This event might start new immune signaling processes breaking some default, previous default process involved in ME CFS ”
(B) it strikes me that in the recent results of the Pilot Daratumumab - and also Cyclophosphamide study I think - strong immune suppression for participating patients also lead to reducing IgGs / lower white blood cells .
(see the low IgG‘s results
in this thread)
2 questions I have:
1. can the
bone marrow possibly be involved in ME CFS (or in Jen”s case) ?
- Because of the low white blood cells (or neutrophils) ?
- maybe infection or reactivation possibly the
bone marrow / or producing the wrong or defect white blood cells / neutrophils / antibodies / IgGs
- and/or mmune suppression Dara was so strong that it reached bone marrow ?
2. Is Jen indeed an outlier? Or an extreme responder to lower doses Jak inhibitor?
-
did strong immune suppression by Rinvoq help “reset the immune system”
- by reaching all sick cells in the whole body - incl difficult to reach locations as bone marrow, brain stem - that have wrong JAK1 INF-alpha signaling (in a itaconate shunt) ?
- Or / and an other unexpected unintended mechanism flipping something still unknown ?
(would be great if Jen could help in answering)
