Hi everyone, have been in hospital taking immunoglobulin and intravenous cortisone as my count was pretty low and doctor was worried about hemorrhage. really helped and I felt sooo well and alive after that. now I am at home taking cortisone. unfortunately as the cortisone dose was being gradually cut my count kept falling and now I am at a loss as to what to do. Have no intention of having cortisone all my life, you get incredibly bloated and frankly i dont feel well. What a horrid illness this is.
I had no idea people could live with ITP (chronic) for so many years, i thought it was a one off thing and then you would be cured! has anyone posted a complete guide about ITP that i can have a look at? I am totally lost as to what to do and the doctor is also a bit lost! most info on the internet is pretty limited and repetitive.
thanks in advance
BTW im portuguese and live in portugal!