Hi Ilene,
A Ferritin level over 5000 is rather high but I saw iron levels up to 22000 when I looked at the reports from the Hematology Conference i San Fransisco Dec 2008.
I have not tried Exjade (yet) but but you can see the adverse effects in this article:
http://www.rxlist.com/exjade-drug.htm (page 3).
Adverse Reactions occurring in 296 Exjade-treated patients
Abdominal Pain 21.3%
Diarrhea 11.8%
Creatinine Increased 11.1 % (negative impact on the kidneys)
Nausea 10.5 %
Vomiting 10.1 %
Rash 8.4 %
These patients had not AA or MDS but other Thalassemia but I think the frequency of reactions is much the same in all blood diseases.
It is very difficult to tell you when iron overload can damage other organs. Ask for the liver tests since the liver reacts first on iron overload. Then I have had MRI on the heart to control if I had iron deposits in the heart but I live in Sweden where we pay the highest taxes in the world and nobody asks for costs for examinations or treatment (I had not a trace of iron in my heart after 40 units of blood).
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Ferriprox (not allowed in the US) for iron overload after 40 units of packed red blood cells.