First Post about AIHA

[PCBnPBC]

Hi, Introducing myself, ( Charlie, 58 years young Male)

I had an autoimmune disease ( PBC) hitch caused me to have a liver transplant in Nov 2014 .... a few bumps in that road, but apart from fatigue and cognition issues, I am very happy and well..... well until 01 July 2020 ... I woke up Bright Yellow, we assumed it was liver! But it turned out to be Refractory AIHA ... SPENT 3 months in hospital, on 100 mg prednisolone, tried Rituximib, then went on to a Chemo drug Bortizimib ( I do not have cancer) The Bortizimib reduced my need for infusions from 8 units per month to two units a month, now I have completed the 6 cycles and I am going back to 8 units per month of blood.

I am a rare one, being on Tacrolimus ( immuno suppressant) for my liver, I should NOT be able to get autoimmune Refractory AIHA ! In fact there are only half a dozen my consultant can find world wide.

So, it’s a very long shot but anyone else struggling to get rid of Refractory AIHA ?

[cajunjeff]

Welcome PCB. I had problems getting over AIHA and ivig infusions helped me a lot, I don't know if you have tried that.

Here is an article with some treatment regimens for refractory AHIA that might help you if you have nor seen it:

ashpublications.org/blood/a...

Good luck.

[Phil4-13]

Welcome, Charlie. I send my best wishes for solutions to your medical condition. I don’t know about what you’ve described, but you are in the right place to ask your questions. Sandra😊