My son Grant has been taking Exjade for several months. He HATES it and still really has to gag it down. He mixes it with orange juice and lets it dissolve for about an hour. His dosage is 1500 mg per day (three 500 mg tablets). He takes it just before bed and has not had any adverse effects at all. His current ferritin level is around 2700. It was down to 1700 but then his need for rbcs increased a bit so we saw it climb back up. He uses any excuse to not take it, but even when he takes it religiously on a daily basis, the ferritin reduction is slow. It does work though and is certainly a better choice for him than attempting to deal with subcutaneous Desferal. With platelets running in the single digits, the daily subQ would most certainly be problematic with bruising and bleeding.
Paying for Exjade is another story entirely. We have been fortunate enough to have some angels help us out with getting Exjade. Our Blue Cross policy does not have Exjade on their formulary, so the non formulary copay for this drug is over $2000 for a 30 day supply which of course is ridiculous.
We were denied assistance by HealthWell Foundation and also by Novartis. I am now in the process of appealing to Novartis again, letting them know exactly what it costs to be transfusion dependent for a year, even WITH pretty good health coverage. I'll let you know how it turns out.
Wendy/mom to Grant, age 15
dx 12/4/98 AA