In order of your asking, No Dad never had AIHA,. Following his fall he was admitted to hospital. It took weeks but eventually it was established that he was having a series of minute strokes that were most probably responsible for all his symptoms (dementia & Parkinson’s). There was nothing we could do, Dad had made a living will, he did not want to be bedridden or a living vegetable or to be kept alive for the sake of it. In one lucid moment he asked me and his Consultant to let him go. He died quietly and with dignity. I miss him. :angel:
I developed AIHA, I think after a throat infection, some 2 ½ years ago. The throat infection left me feeling tired and lethargic, my son pointed out that people normally only got out of breath going up stairs not down as was happening to me and that maybe seeing the GP would be sensible. I have never really been ill before and my worry must have made the receptionist listen to me because I was given an immediate appointment (at 9am).
To cut along story short, the GP sent me straight to hospital for blood tests (9.30am) and by the time I returned home at 10.30am the GP ‘phoned me to get back to hospital as they wanted to admit me :eek: . My RBC was 5 and it was decided to give me a blood transfusion, as I am AB Rh (D) neg this took 3 days to arrive and by then my Consultant was trying me on a cocktail of drugs which he hoped would work. He decided hold off giving me the transfusion for 48 hours, unfortunately by then my RBC was down to 3 I was unable to stand on my own and had developed a heart murmur. One week down the line it still was not established what was wrong but I was given a blood transfusion. I could have fought Mohammed Ali with a hand tied behind my back. I had soooo much energy. I was discharged from hospital but retuned as a day patient for a full body scan (cancer) and repeated blood tests. When everything else was ruled out I was told I had AIHA.
I think I started on PPREDNISONE at 20mg a day with a side order of 5mg FOLIC ACID. The steroids were gradually reduced over a period of 14 months. About 3 months after I had started on the steroids I was prescribed ALENDRONIC ACID (FOSAMAX) and I took a 70mg tablet once a week. This was to counteract the effect steroids can have on bone density… I think.
From what I have read I got off lightly with both the AIHA and the steroids. I have been off all meds for 14 months, I had blood tests every 4 weeks for about 6 months and now they are about every 2 months. My RBC averages at 12/13 and I am pretty much back to normal although I have been told that I will have AIHA for the rest of my life.
This has been a right screed, I hope some of it may have helped. There are more of us out there than you think. Let us know how you are doing, we may never actually meet another AIHA victim in person but hugs and love can be sent over the net.