Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Sharmin on June 12, 2007, 03:38:24 PM

Title: desferal-5 or 6 X a week
Post by: Sharmin on June 12, 2007, 03:38:24 PM

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?

Title: Re: desferal-5 or 6 X a week
Post by: Andy Battaglia on June 12, 2007, 05:18:55 PM

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).

Quote

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.

Title: Re: desferal-5 or 6 X a week
Post by: Sharmin on June 13, 2007, 03:00:16 PM

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.