Good question Andy,
At first I'll say that I have not used exjade as monotherapy. I have taken it along with ferriprox and it worked, the combination definitely lowered my ferritin level at 68 from 113 - I am referring to the counts in order for you to get a clear picture of what I am saying. I have only used ferriprox alone as a monotherapy for a whole year and my MRI showed that it was not enough. Although it maintained my ferritin at a low level as well, the T2* liver worsened than the year before (though still clear). That made me reconsider ferriprox monotherapy and add exjade at first(lower dose) and then desferal after my decision to drop exjade as too risky(my opinion).
Andy, I agree with your opinion here for exjade potential side effects- a risk one does not take in low ferritin levels, at least I did not.
After much thought and consideration, I came to the conclusion that ferriprox is enough in low ferritin levels but with a slight touch of desferal in order to keep the liver clear.And this seems to work. Of course, one can rearrange chelation program. You see, when in low ferritin levels you have the option to skip one or the other for some time. Let's say, you want to get some rest for a month or so-you drop desferal and then the next month you press harder. This is a choice you have when in these levels - although I would say that I have not applied this a lot - but then I am very disciplined in my chelation- another thal could do that.
I think that all chelators have the same effect on low fe levels, considering of course the effect each of them has on the organs. Exjade and Desferal mainly for liver - Ferriprox for heart. That's why combination therapy is needed even in low ferritins. Of course, this is not the case with the high ones. In high levels monotherapy is surely not enough.
In the end, I have never been comfortable with exjade since the beginning - that's why I dropped it in spite I hadn't had any serious side effects.
Lena