Hello everyone!

My name's Chanapa and I just found found this lovely little community last night. I'm so excited that this exists and would love to get to know some fellow Thal patients!

I'm a 20 year old college student at Arizona State University. Am also a part of the honors college there. I'm studying biological sciences w/ a concentration in biology & society (it's basically the same as a regular bio major with a few classes highlighting the ethical, legal, philosophical, and historical perspectives of the sciences). Looking to apply for an accelerated Master's program next year and eventually apply for pharmacy school after that's all done.

I have Hemoglobin E/Beta Thal. Transfusions every 3-4 weeks and I've been taking Exjade for a bit over 5 years now. Before that, I was on Desferal. The Exjade hasn't been as effective as the Desferal, but my ferritin levels have seemed to stabilize a little. I've really been looking to try combining the Exjade and Desferal, maybe do Desferal a couple times a week. I don't mind the hassle of the Desferal infusions too much, I'd just rather be healthy. Does anyone have any experience with this? My hematologist just keeps upping the Exjade dosage, but I'd rather just try the combination treatment.

Other than that, nothing too out of the ordinary! Just trying my best to juggle my health and college life- doing the best I can and keeping my head up!

Hi Chanapa and welcome,

There are no official recommendations yet regarding the combination of Exjade and desferal, but there have been some small trials and quite a few people have tried it on their own. There is no doubt that it does get the ferritin down more quickly. Our moderator Sharmin's son was in a trial at Oakland Children's and he did quite well, as did the other patients in the trial. You can decide how often you want to take desferal in addition to Exjade.There is a little adjustment you can make using Exjade that does work to lower ferritin and also make Exjade more tolerable to the stomach. Splitting the dose, taking half in the morning and half later in the day, will give you a full 24 hour chelation, whereas once a day doesn't really cover 24 hours. This was pioneered by thalpal patients and parents and its use has spread dramatically because it really does work. Our members have actually pioneered quite a few things regarding chelation combinations and use of supplements to help fight the damage done by iron and oxidation.

Hi Chanapa,

Welcome to Thalpal!

May I ask what are your current ferritin levles? I also take Exjade since past 4 years (since it was introduced in India) and yeah, levels are not deeming down as it should, but as Andy advised, I've started split dosage (half in morning, and other half in evening) since past 2 months and I would be monitoring my progress and would see how it goes.

You should try that as well.

-Pratik.

Andy- thank you so much for the advice! That's such an interesting method, splitting the dose. I would never have considered that at all. I think I will begin trying it and will monitor how it works out for a bit.


Pratik- hello! My current ferritin level is 1300. Prior to Exjade, my ferritin was around the 400-500 range. Quite a big difference, but I guess I should just be thankful that it's not climbing any higher and that my kidney is taking it well. I'll definitely try splitting the dosage and see how it goes from there! Such a good idea that I never would have thought of on my own.