Okay so we have more information. If you remember I have been initially cleared to get a new drug Rux...a...something. I now have more information about the whole deal.
First it's not a trial it's a program to get the drug on compassionate grounds as its not on the Pharmacutetical benefits scheme (PBS). Bluey thinks my spelling is 'cute'. Anyway I'm in line to get this but Doc Shoozenbootzen is away in Canada skiing so the great Doc that was my registrar during Translant was the sub today and he filled us in but doesn't know if we got approved.
The drug works on one of the later pathways in the progress of my disease. It doesn't cure me but will give immediate relief from lots of symptoms. Unfortunately it does reduce red cell production which is an issue for me. I'm on a drug to boost red cell and I'm holding my own with that drug so may not have to have too many transfusions but it's a possibility. The SUBDoc gave us lots of good inf about my cells and the pathways etc so we feel very well informed now.
I remember tha Doc Shoozenbootzen said the new drug may even help my kidneys as well so that would be a great side benefit.
More later
Chris
