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Transfusions and iron overload
My husband has had 130 Txs , usuallyy of 3 units. He has been chelating with desferal since 2005. It is important to decrease the ferritin before it is over 2000. His doctor did not worry about the increase in ferritin because the survival rate was a lot lower in 2003.
Exjade is convenient but caused liver damage even though he started at a lower dose. Desferal infusions are not as convenient having to wear a pump overnight for most nights but the lower ferritin levels seem to have improved his transfusion interval. We are not considering a port-o-cath until it is essential because he probably would not survive if it became infected. He is a carrier for staph on the skin which means extra care with the subcutaneous desferal infusions.
My advice is to read as much as possible before starting any treatment and always start at a lower dose to be safe.
Good luck
Helen
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Husband, MDS 5q- 2003. Transfusions,desferal infusions, Revlimid 2007 partial remission. David passed away Nov 2010 with untreatable heart arrythmia probably from iron overload.
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