Exjade / no blood transfusions

Hello,

After some googling tonight I came across this website and hope someone might provide some direction / help me understand the recommendations my mom is getting from her hematologist.

My mom is in her 70's and has a liver transplant. She received the transplant in the early 90's because she contracted Hep C during the 70's through a transfusion after a miscarriage.

She was recently referred to a hematologist because of some of her blood test results. They started her taking Vit D because her levels were low and yesterday they told her due to excess iron in her blood, that they wanted her to start on Exjade. I have her last blood test results and her RBC, HVB, HCT, MCH and MCHC are low. Her RDW is high.

She only had the one transfusion many years ago, so why would she have excess iron in her blood? I'm also concerned about the potential side effects considering her liver disease and am following up with her transplant facility but in the mean time thought someone here might be able to help me / us understand.

Thanks so much,

Hi worrieddaughter,

Has your mother ever been tested for the HFE gene which causes hereditary hemochromatosis (HH)? It has been established that liver transplant patients who carry this gene can accumulate a toxic iron load through excessive absorption of iron in the gut. This could explain why her iron is so high that chelation is needed. The transplant facility may be able to tell you if this is a possibility. Testing for this gene was not available until years after your mother's transplant. The only ways to build up an iron load are through transfusions, excessive absorption from food, and excessive iron supplementation, so it would have to be one of the latter two. HH would probably be the first thing that should be checked to find an explanation for the iron load. Do you have results from an iron panel of tests?



As far as Exjade in the elderly, this is from the Novartis site.
http://www.us.exjade.com/index.jsp?usertrack.filter_applied=true&NovaId=2935376869897000581

Liver: Some patients developed severe liver problems, in some cases fatal, while on EXJADE. Many of these patients were greater than 55 years of age and/or had multiple medical conditions already affecting their liver. Your doctor will give you blood tests called serum transaminases and bilirubin before starting treatment, every 2 weeks during the first month of treatment, and then monthly.

The vast majority of Exjade-related deaths are in the elderly who have prior histories of liver or kidney disease. Ask the doctor about the possibility of your mother having IV desferal treatments instead of Exjade. Much depends on how severe the iron load is and a liver scan might be appropriate before choosing chelation. I am not saying Exjade can't be used in the elderly. but the risks are higher and monitoring has to be followed strictly. I would definitely talk to the transplant center first before deciding on chelation.