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Originally Posted by Andy S
Hi, and thanks for posting. I'm in the pre-assessment limbo phase, searching all over for information, and it's nice to be in touch with old stagers who have levelled out.
My MDS was very hypocellular, strongly auto-immune, daclizumab worked by targeting the activated T-lymphocytes. The auto-immune process was still there but my levels rose.
PNH stem cells are apparently not affected by the auto-immune response so they have an evolutionary advantage and increase.
My clones are around 80% atm. My main symptom is lethargy, though I have had 3 episodes of intense haemoglobinuria.
If I'm treated with ravulizumab, which I think is likely, I'm hoping that I'll have more energy.
I don't think BMT is used for PNH in the uk as ravulizumab is so safe.
Best wishes to all.
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Very interesting, Andy.
Yes, I did read that "hypocellular MDS" (much more uncommon kind of MDS) was more auto-immune, and that's why you might have PNH. Most MDS is not auto-immune (immune-mediated). That sort of makes sense as to why you may have PNH.
Aplastic anemia and PNH are more related to each other (both immune-mediated) than typical MDS is to aplastic anemia or PNH.
Please give us updates.
Love and peace,
Matthew