Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: joyce on December 29, 2011, 05:04:56 AM

Title: Will start desperal at 2 Y/O?
Post by: joyce on December 29, 2011, 05:04:56 AM

Hi.. back to update Jovy's ferritin level.

Today we were told by the dr to start his desperal as soon as possible, not long after that she called us back said that, actly we have to hold the desperal until he reached 2 years. ( now Jovy is 1 Y/7 month) His ferritin level now is 1397. the dr said that it is still OK and desperal will  be on May next year.

Could anyone give opinion on this? is it really okay with Jovy with that high of ferritin and haven't started the desperal yet? Why don't the dr let us start the desperal now? What about the effect to his growth and appearance? im afraid his ferritin will go up higher and affect his growth and all..

Thanks
Joyce!

Title: Re: Will start desperal at 2 Y/O?
Post by: Andy Battaglia on December 29, 2011, 05:20:41 AM

Joyce,

Why not Exjade instead of desferal?

Title: Re: Will start desperal at 2 Y/O?
Post by: joyce on December 30, 2011, 12:18:40 AM

I heard that only patients above 12 years old will be given the Exjade here.
All patients below that age should use the Desperal.

Title: Re: Will start desperal at 2 Y/O?
Post by: joyce on December 31, 2011, 04:54:08 AM

Quote from: joyce on December 29, 2011, 05:04:56 AM

Hi.. back to update Jovy's ferritin level.

Today we were told by the dr to start his desperal as soon as possible, not long after that she called us back said that, actly we have to hold the desperal until he reached 2 years. ( now Jovy is 1 Y/7 month) His ferritin level now is 1397. the dr said that it is still OK and desperal will  be on May next year.

Could anyone give opinion on this? is it really okay with Jovy with that high of ferritin and haven't started the desperal yet? Why don't the dr let us start the desperal now? What about the effect to his growth and appearance? im afraid his ferritin will go up higher and affect his growth and all..

Thanks
Joyce!

Again... asking the same question.. :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink :wink

Title: Re: Will start desperal at 2 Y/O?
Post by: Andy Battaglia on December 31, 2011, 05:02:17 AM

The modern standard is to begin chelation after one year of transfusions or a ferritin above 1000.

Standards of Care Guidelines for Thalassemia

Quote

Chelation therapy should be started after about one year
of chronic transfusions. This correlates with a serum ferritin
of approximately 1,000 ng/mL.

Title: Re: Will start desperal at 2 Y/O?
Post by: joyce on December 31, 2011, 08:29:36 AM

Thanks.. thats the answer im looking of..

Hmmmmmmm.....
I wonder why is the Dr want it to be started when he is 2, instead of now..

Title: Re: Will start desperal at 2 Y/O?
Post by: nwalsh528 on January 03, 2012, 01:14:00 AM

Quote from: joyce on December 30, 2011, 12:18:40 AM

I heard that only patients above 12 years old will be given the Exjade here.
All patients below that age should use the Desperal.

Exjade is approved for use in children 2 and older in the U.S. and Canada. So, when your doctor says child must be age 12, is he/she saying this because it is only approved for that age in your country? I'd want to know that was a fact.
Desferal (according to Novartis - manufacturer) is not intended for children younger than 3.
From the Novartis (manufacturer) website:
"•Desferal may affect weight and growth rate in CHILDREN in some cases. The weight and growth of CHILDREN receiving Desferal should be monitored every 3 months.
•Use Desferal with extreme caution in CHILDREN younger than 3 years old; safety and effectiveness in these children have not been confirmed."
I know you wondered about your child's growth without desferal. Looks like it is a concern when using desferal, especially in use under age 3.
Also from the Novartis manufacturer"
"Growth Impairment in Children:  In Children receiving desferal growth is impaired and bone changes may occur. The risk is greater in children under age 3. Even at low doses, predicted adult height is not achieved."

Nicole