how lovely to be able to read posts from people suffering from the same condition as me........
i was diagnosed with aiha in may i was treated with prednisolone but unfortunately once it was weaned off my disease kicked in again and 2 months ago once again i was back on 80mg pred a day. very depressing, my mega moon face had gone back to normal id lost 6kg of the weight id stacked on & had been back at work. im now down to 25mg of pred but still have the fat hamster face, put on more weight despite trying so hard not to and even worse this time my neck disappeared 3 weeks ago which makes me look even more obese!!!
now i know i shouldnt complain, i know a lot of people diagnosed with this condition also end up being diagnosed with serious diseases such as lymphoma & i should really be glad that a cause hasnt been found for my condition despite having every test known to man ( & a few more) but its a bit depressing!!!
my consultant has mentioned that he may consider putting me on the steroid sparing drug azothioprine in the future if they cant wean my steroids either off or to a very low dose without my illness kicking in again, does anyone have any experience of being on azothioprine???
at least if my condition flares up again when my steroids are weaned down i will be much more aware of the symptoms next time, i found with my flare up the first sign was i could hear my heart beating in a sort of rushing noise in my head, plus the very pale conjunctiva, tea coloured urine & i was very tired when walking even a short distance
i havent heard of rituxan i must do a search on the net for more info.
thanks everyone your posts have helped me heaps
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