[Marlene]

Hi Bill,

I would say waiting 3 months is not a big deal but I would not wait much longer than that because as long as you are transfusion dependent, your iron will increase. Even after treatment, you may not get to an acceptable HGB level to do phlebotomies for quite a while. So there's a high probability you'll still have to do desferral anyway and the sooner you start, the better off you'll be in the long run. They say that iron overload does not really impact your health until you've had it for a long time but I think, in John's case, it did. It creates a lot of oxidative damage in your body.

It has taken John a really long time to get rid of the iron. He started with desferral, then phlebotomies, then Exjade. He stopped the desferral and went to phlebotomies when his HGB was around 11.5 (with the help of Procrit.) He did this because of side effects from the Desferral. Then the phlebotomies got to be too much in that he could not make up the blood volume. So then when Exjade was approved for use, he started that. But then the Exjade was too hard on his kidneys and he stopped it. We have come full circle in that he's back to phlebotomies to get the remaining iron off. His HGB this week was 12.4 and we had 250 ML taken off (they usually do 450-500ml/month). He'll do this every other month until it gets into range.

John could never tolerate full doses of either drug so the iron came off at a slower pace. The phlebotomies do work best for him. John's FE was 4000 in less than one year from diagnosis. We held off doing desferral because everyone thought he would be recovered enough in the next few month and he could address it then. Well that didn't happen. In hindsight, we should have started earlier but no one expected his FE to be so high so quickly and that it would take him so long to recover.

Hope this helps.

Marlene