Hi all, sorry to muddy waters with pancytopenia, just means v. low on all blood counts. Still sticking myself with needles and still having pump 5 days on and two days off for excess iron. Spoke to docs about feeling and being so sick so they have halved dose to 2g. There are bruises/sore patches involved in keeping the needle in so long but sleeping with the pump is not a problem. Hoodies are good because you can stick the pump in the pocket.
For me ciclosporin 250mg per day does not keep my blood up and therefore transfusions are necessary, it also means I feel more normal because hgb drops quickly below 8 and then I lose the plot big time
Had not heard anyone else complain about gi effects and headaches associated with desferrioxamine, so thought I must be having allergic reaction. It does make my tongue swell, so when I am chewing on my tongue at night I know its time to take the pump out
Hospital v good and let me run my own regime, i.e. I have sharps and kit at home and put sub q in on my own now which helps with the old empowerment. I am settled into doing the pump thing now and apart from minor infections I am glad I persevered. Best wishes to all, still vertical and still got the smile. Berry.