Does Desferal remove heart iron?

Have always wanted to know the answer to this question.......thanks for any replies

Hi Siena,

I am a thal inter myself but have never experienced this. My friends who have thal inter have also complained about unusual heartbeats like quick beats, loud beats etc. I am not sure, but cardiac arrythmias are more common in intermedias than in majors. Will try to gather more information on that. Meanwhile, dont worry and stay cool.

Take care.

Regards,
Namitha

Siena,
    I have thal intermedia and I was getting lots of what they called premature heartbeats. It felt like the rhythm was off a little, and the beats were very noticeable. Normally you don't really feel your heartbeat, but these felt like they were going to pound out of my chest. It drove me crazy. I would have them every few seconds and it would go on for hours. It seemed to happen when my body was stressed, or my hemoglobin was low. I haven't had it happen very much lately. The doctor said it was OK, but it sure didn't seem right to me. It would wear me out.
     Sorry to hear about losing your baby, and the miscarriages. Talk about stress, you have been through so much. My thoughts are with you and hope that your heart will settle down after your stress level is able to relax a little. Take care, Jean   

Hi guys:

My little cousin is 2 years old and she is Intermedia. She has a heart murmur caused by thal. Im suprised it happened at such a young age? (but... I do not know enough about it to be the judge).
Does this mean her heart is working extra hard, or is it another reason? She is not on tx's. she is on Hydroxyurea.Could the medicine be to blame?

thanks

Heart problems are not listed among the side effects of hydroxyurea. However, heart problems are well documented among thalassemics, although it is much more prevalent in majors. Some intermedias do show heart failure after a longer period of time than majors.

The heart does have to work much harder when the Hb is lower and that may be an explanation for the heart murmur, as her Hb has dropped rather low before starting on hydroxyurea. If that is the reason for the murmur, it may lessen with the increased Hb level. It is also possible it is not related to thal at all but the doctors should eventually be able to come to some conclusions as to the cause.

The study of heart failure in thals is still in its infancy. It was long thought that high ferritin levels were the reason why thals had heart failure but more recent studies have shown that even with low ferritin levels and no evidence of iron damage to the heart, that heart failure often occurs in majors and also at a later point in life in intermedias. One explanation has to do with the stress on the heart muscle from the hyper-transfusion regimen that majors are on for a lifetime. Much research still needs to be done on this and is being done. As thals live longer lives, more problems are becoming evident and research into causes and solutions is ongoing. A group such as ours can play a valuable role in terms of sharing both life experience and treatment experience. We will continue to do our part.

Hi Andy,

Your last post made me a little nervous. Im nervous, because I thought heart problems (in Majors) only occured due to poor chelation/tx'ing. I didnt know it was inevitable with every thal. I know it wont happen with Lauryn until years to come (?) but, I thought your prognosis soley depended on how well you took care of yourself? Im not saying that people like Danielle who are having heart situations didnt take of themselves... I thought maybe they had other underlying complications,that didnt necessarily apply to thal. It frightens me to think Lauryn might aquire heart failure? Is what Im saying correct? Or am I totally off the ball??? Am I over reacting??

thanks,
Christine

Hi Christine,

Always keep in mind that everything that has been researched about thal has been done with older thals who did not have the advantages of everything that is known today and also that treatment has evolved quite a bit. What has been found is in older thals who have not had a lifetime of the comprehensive care that is now available. These thals are in their late 30's and 40's before these problems are appearing and present new challenges but no one is saying these challenges can't be overcome. Also, remember that things are changing quickly in terms of what is known about thal and what the future will hold. Cures are no longer a pipe dream and are within our grasp with the proper allocation of resources which will be the major obstacle to progress. The cost of just one cruise missile would finance gene therapy trials in the US. Ummmm...it just doesn't seem right. So many things could be different in the world with a change in our priorities.

Keep your hope alive. Things will be so different as your children grow. Raise them to be as healthy as possible because those will be the ones chosen first when it comes to new therapies and potential cures.

Thanks Andy!

You're the best!
 :hug
I know I can always count on you for giving me such quick and informative answers!
Plus your optimism is soooo greatly appreciated!!!

  :blowkiss

Christine

i have been told by a thalassemia doctor that desferal does not remove iron from the heart.dont know if this is correct but i have been told.hope this helps with your question.