Hi Everyone!

Hi Everyone,

My name is Hamza Khalid. I am 23 years old and have Thal Major. I receive monthly transfusions and have a ferritin level of about 5000. ...as you can tell, I haven't been too compliant with Exjade.

I really hope to learn a lot from you guys as I have never talked to other Thalassemia patients.

Hi Hamza and welcome,

Where are you being treated and have you ever been to the thal center in Philadelphia (I see from your bio that you're in NJ)? I'd like to see you get your ferritin down, so post and tell us why it's gotten so high. Is there a compliance problem with Exjade? We may have some ideas to help, whatever the issue is. I also want to make sure you fully understand the dangers of high ferritin. I've run into too many patients in the US whose doctors are not properly stressing the ultimate importance of chelation compliance.

Hi Andy,

Thank you for the reply and welcome. I'm actually being treated at Hackensack University Medical Center, in Hackensack NJ and no I haven't been to the Thal center in Philly..never even heard of it actually. The only problem I have with Exjade is that I don't like the taste and feeling it gives me while drinking. The chalkiness of it. Other than that, I am not allergic to it.

Lambo,

Welcome to thalpal.  I realize that exjade has a texture that makes it difficult to consume.  For this reason we have found various ways to make it dissolve better and have recently started mixing it with food for our 12 year old son. 

It is very important to lower your iron levels.  I believe that it would be helpful for you to go to a comprehensive thalassemia center, you will quickly see an improvement in your overall health with their treatment plans and advises. 

Best of luck and welcome to thalpal!

Sharmin