desferal-5 or 6 X a week

Last year my son's tx requirement increased.  It has decreased slightly but he is still being transfused every 3 weeks (460mL).  He is 23kg.  Until last year he was getting desferal 5X a week - 10mL over 10 hours - (700mg).  Recently his dose was increased to 1000mg - in January his dose was increased to 1000mg, but he is still getting it 5X a week.  His ferr - which was bwn 900 - 1200 for years increased to 2300 earlier this year because he was transfused so much last year.   

I personally think that it would be best if he were on desferal 6 X a week but his doctor has not agreed to this yet.  I am eager to bring his ferritin down before it gets out of control.  It seems for the moment that his transfusion requirement has decreased and his ferr was 2100 4 weeks ago.  I still think that we should add another day for desferal.   What do you guys think?  Andy?

Hi Sharmin

Is your son getting IV desferal along with his transfusion? Lisa always got desferal along with her blood and I'm surprised more patients aren't given it this way. I don't think you should add a day of desferal until your doctor agrees.

From http://www.pharma.us.novartis.com/product/pi.jsp (click desferal).

In addition, 2000 mg should be administered intravenously with each unit of
blood transfused; however, Desferal should be administered separately from the blood. The
rate of intravenous infusion must not exceed 15 mg/kg/hr.

Hi Andy,

He used to get IV along with transfusions but his doctor stopped that about a couple of years ago.  I am beginning to get antsy right now because I really want to bring his iron down before it becomes a bigger problem.  I really hope that he agrees to add an extra day with the same amount of desferal, we can always go back to 5 days once everything returns to normal. 

I can ask him about resuming the IV with transfusions again.  I  mentioned exjade, but our doctor wants to wait before beginning anything new because we have normally done quite well with desferal.