alberta canada new to forum

[birn]

Hi,
I am a 56 year old male that has had idiopathic immune mediated pure red cell aplasia since 1997. Symptoms were shortness of breath lack of energy. Lab test showed a rbc of 38 (some places move the decimal point 3.8 )
Had thymus removed rin 1997. Took many different drugs to suppress immune system so red cells would be allowed to grow in the marrow. After a year of rbc transfusions cyclosporin a was used. This did the trick @ 150mg/day. Then 2009 had a drop in red cells again and was transfused for 6 months. Doctor increased dosage to 300mg/day. This brought me back to around 100 rbc. In 2013 rbc count went down again and restarted transfusions CSa was not working. When doctors tryed increasing CSa again started to effect my kidneys. At present I am not taking anything for the prca. Being transfused avg. 2 units PRBC every 10 days. Have tryed exprex. Rituximab. At present doctors trying to control iron overload I have had reactions to exjade and desferal. Exjade was a rash all over my body not itchy. Then tryed desferal and it reduced platels down very low numbers 3. Retryed exjade at low dose and slowly increasing again. No rash, but platels went down this time. At present im taking nothing for iron overload.
I am taking pnedisone 50mg.day to boost platelet count. Doctors going to try to use Alemtuzmab (Campath) as soon as platelets recover. As far as iron overload presently ferritin @ 6800+ Doctors are looking at a drug used in Europe and in US if other two cannot be used called deferiprone (ferriprox). This drug has one major possible side effect it can reduce white cell count, neutropenia and leave you open to major infections. I would welcome comments from forum members

[Caregive]

Welcome to the forum. My husband's ferritin had dropped from 2300 to 1600 on Exjade. He has minor issues with the drug but it's working so on we go. He has MDS. Your ferritin sounds so high. I hope someone can add in here to help you out. Good luck with all the health issues you have.