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Old Tue Jun 14, 2016, 05:28 PM
Lulu Lulu is offline
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Join Date: Nov 2011
Location: UK
Posts: 49
Hi Baillie

My doctors seem quite interested, however it is not their area of expertise and I can't get NHS funding for FMT as it is only done for C-diff. I'm going to go for it anyhow, have had some very kind donations and the rest will go on a credit card.

So far I have not had any conventional drugs. Only because I have been *very* fortunate in that I responded so well to menatetrenone, going from being very ill in 2011 to transfusion-independent for 3-4 years. Main problem now is that I have developed transfusion antibodies, which I am told is rare in someone who has not had many transfusions. Test results below..



If the FMT does nothing, or my hg goes down before it takes effect, the next step would be to try EPO. They haven't suggested chemo as yet. I am curious about Rituximab however, particularly as I have this transfusion antibody issue, and wonder if the underlying issue is some autoimmune problem. I don't think Rituximab is licenced in the UK for MDS though.

Last edited by Lulu : Fri Jun 17, 2016 at 08:30 AM.
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