There are some pretty well known and well proven chelation methods and at times I feel like we really have a handle on chelation and then I'm not so sure. Yes, in most cases, if chelation has been fully compliant since the beginning of chelation, it's usually fairly easy to manage the iron load without and issues, as long as the chelators can be tolerated. But, not all patients fit this mold and then we see that chelation might not be so simple to figure out. Patients may have hepatitis. They may have damage to the liver and other organs from iron. They may even be having affects from the chelators themselves. So, what happens when a chelating patient's liver function is not what it should be and chelation is not working as expected?
I have heard from multiple patients in recent weeks, who all have a similar problem. Their aggressive chelation has been successful in their hearts, but their livers remain iron loaded, in spite of intensive chelation programs.
I don't know how many answers we have to this problem, but I want to mention a couple approaches I have heard about this week. One was Exjade at a dose of 50 mg/kg (10 mg higher than the high recommendation) and this was working. The other was 130 mg/kg (high end being 99 mg/kg) of Ferriprox daily. Over a four year period, this dosage with no other chelator being used, brought a very high liver iron load down to normal. Currently within this group, we have Waleed trying three chelators at once. I don't know if this is safe in the long run, but with proper monitoring, including conscientious self monitoring, this method may work. I do know that before any trials were ever done on any combination of chelators, patients were using them long before. Patients have often seen that their lives are at stake and have taken the risks because the alternative was not going to keep them alive. It's a shame patients have to be their own guinea pigs, but in the real world, that is exactly how combination chelation has always been developed. What I am seeing is that some patients need higher doses of chelators to clean their systems and that we are only beginning to understand what is ideal in these situations. I'm not sure that a high dose of an oral chelator is necessarily harmful to one who tolerates that drug well. The woman who took 130 mg/kg of Ferriprox has no choice. It's the only chelator that she can use. (I do find tremendous irony in the fact that this has taken place in Canada, which was the last country to finally approve Ferriprox).
I think we still have a lot to learn about chelation, and we need more chelators, so people have a better chance at finding something that works well for them. But whatever anyone tries, please make sure you are under medical supervision and get the appropriate tests done as regularly as required.