Hi Zaini,
I will definitely ask the question. My personal opinion is that since both L1 and exjade remove iron at the tissue and organ level - using desferal in combination can chelate the iron removed from the tissue by either L1 or exjade. (Desferal does not have the ability to easily get inside tissue to bind an remove iron - but it is very effective at binding iron in the plasma for its removal). In this way the effect of desferal with either exjade or L1 is synergestic. L1 or exjade remove iron from tissue - making it available for desferal to remove. Desferal makes L1 or exjade therapy more effective by quickly removing iron that they have removed from tissue.
On the surface, it does not appear to me that L1/exjade combination therapy would have synergestic effects since they both remove iron from tissue - and not is as effective as desferal at removing it from the plasma. The possible benefits that I see are 1) They are both oral - meaning no needles!! 2) L1 removes iron very effectively from the heart, exjade is believed to remove iron from the liver and other organs and together they could possibly remove a lot more iron. 3) L1 does not cause the same spike in SF when one first starts to use it therefore I am assuming that either it removes iron less quickly than exjade or L1 is more capable of excreting iron from the plasma then exjade and in this case it would work well together with exjade. For these reasons the two may work well in combination.
My reasons for not thinking that they should be used in combination are: 1) desferal is known to have very few side effects while exjade and L1 are both considered to pose more threat - therefore using them in combination with each other (as compared to using either in combination with desferal) may pose of a risk 2) exjade may in fact be good at removing iron from the heart as well as other organs - in this case L1 may not be necessary while using exjade to remove cardiac iron overload 3) Desferal requires very few tests to ensure that it is not causing side effects - exjade requires testing every 3 weeks - and L1 requires many tests as well (because of its effect on immune system, joints etc) - therefore if you were using both imagine the number of tests that one would have to have done (which also shows you how many side effects one is risking).
These are my thoughts for why one may or may not consider the drugs in combination - it is a great idea - why not use to effective oral drugs together - remove iron and avoid needles! However the synergestic effects may not be high enough to risk the numerous side effects. I would like to hear what the experience is for the one patient taking the two drugs in combination - because who knows maybe the two would great together. I am excited about the possibility of someday using starched desferal with exjade.
Oakland is not keen on giving L1 to children - because when I asked them about it they had said that they were concerned about its effects on children. By the way Zaini - this is a great question and provokes a lot of thought - I will be honored to ask it
Andy, what do you think?
Thank you everyone for your questions - I will take note and please keep asking and praying that little A's tests go well. We will be repeating the SQUID, T2* and we will be doing a dexa scan for the first time. I am quite nervous but hopeful that the results will be favorable for my son and show that exjade/desferal combination is safe and effective so that it can benefit everyone else.
Thanks guys,
Sharmin