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An update
Just to update:
Cheers to Dr Paquette at UCLA. His regimen of CsA alone seems to have worked! My counts stopped declining about 3 months after I started the new regimen, and now they are SLOWLY increasing!
The best news of all: my ferritin has continued to decline (last PRBC tx was July 2008). The doc says my body is using it to make red cells, and that's a lot better than using Desferal! I am so glad I waited! Last month it was a little over 1000. Dr Paquette says no need for chelation!
One downer: CsA is linked to higher incidence of cancer, and I just had to have a squamous cell cancer lesion removed from an ear. They said they got it all.
So a reminder to everyone on CsA to be on the lookout for this kind of thing! I was lucky that my ENT doctor, who was following up on some hearing loss I suffered, saw the lesion and said it needed to be removed.
BTW, my hemotologist thinks that it could have been the CsA at the root of the hearing loss.
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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