[Marlene]

Matthew....Great news about your mom. She may plateau for a while before you see another jump. That's pretty normal. John would get a big jump and even drop back a little for while before having another big jump. It's about trends over time.

Mola-tecta,

How very frustrating for you guys. You can refuse to do the Exjade right now. Or,if you're not comfortable with that, you can do what we had to do. John would stop/start it depending on he felt. He never got to a full dose because it made him nauseated. You also have to monitor liver/kidney function closely. When he first started Desferral (because Exjade was not available then), they recommend to have your eyes checked before starting. I can't remember if it's the same for Exjade. John had to finally come off it because it was affecting his kidneys. Hopefully he will not start her at a full dose. IMO, it's best to start at a lower dose and work up. If she has side effects, stopping Exjade for a while and restarting will resolve them. They may come back though. John could take it for about three weeks, then have to stop for a week before restarting.

Ferritin is an acute phase reactant meaning it's a marker of chronic inflammation which means that many things can cause an elevation. Even how blood is drawn can impact the FE result. Once it hits 1000, then pretty much anything can elevate it and it's not accurate indication of the level in iron in the body. Johns would fluctuate pretty dramatically, sometimes by 1500. He started chelation 12 months out from treatment. FE was 4469. He was still transfusion dependent. He had daily red cell for about three months, then finally down to 2X a week before getting to weekly, then every two weeks. We estimate he had over 200 red cell transfusions so iron overload was a big issue for him.

As far as efficacy, phlebotomies are the most effective way to reduce iron. John started phlebotomies once his HGB reached 10. He went every other month starting with them only taking 1/2 a unit to ensure his bone marrow could keep up. It still took forever.

It's very difficult to keep ahead of the iron on Exjade while still getting red cells. The best you can hope for is to keep it from getting worse. Another option you can ask about is to infuse desferral while getting red cells.

Wishing you both the best....M