Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Laura on March 13, 2011, 10:30:12 AM

Title: Exjade + Desferal
Post by: Laura on March 13, 2011, 10:30:12 AM

Hello!

Has anybody been on chelation with Exjade and Desferal both combined?


My ferritine has stopped at 2000 more or less and it does not go down so my doctor and I are thinking about the combination of both medicines for a time just to make ferritine go under 1500 at least.

I'll wait for your experiences.

Thanks a lot,

Laura.

Title: Re: Exjade + Desferal
Post by: Sharmin on March 13, 2011, 04:01:33 PM

Dear Laura,

My son was enrolled in an exjade/desferal combination
study in 2008.  He starting value, as measured by
SQUID was 2880, and his cardiac MRI - T2* was 32.

1 year later his SQUID result was 900 and his
T2* was 42.  Ar this time ge was taken off of desferal and
put on exjade alone as Oakland feels desferal is not conducive to
Growth and buulding bone density. 

Currently, his iron level is around 400 and his T2* remains in the 40s despite having
high transfusion requirement at times.

The study proved to be very successful across
Patients with a high success and safety rate.  This
May be because both drugs are required in smaller
Doses - and the doses are reduced as progress is
Made. 

The likely success of this combination may be
Due to exjade releasing iron from organs and
Desferal removing it from plasma(blood stream).

Also, the two drugs remove iron in different ways, therefore
You are getting extra benefit from using them in
Combination until iron levels are reduced to a lower level.

If you have any questions, I can point you to the relevant
Studies.

Best of luck,

Sharmin

Title: Re: Exjade + Desferal
Post by: Laura on March 13, 2011, 07:55:06 PM

Hi Sharmin,

Thank you for your help. Did he take both drugs everyday? How was it scheduled? I have to talk to my doctor this week and I'd like to be prepared.

Thanks again,

Laura.

Title: Re: Exjade + Desferal
Post by: Sharmin on March 13, 2011, 08:14:58 PM

Laura,

Initially he took desferal 5 times a week/12hrs a day and exjade daily.  He began with a low dose of exjade, increasing it slowly until we knew that he tolerated it well.  He was monitored for liver enzymes as well as kidney related issues every 3 weeks.  Luckily, his levels were good throughout. 

Best of luck,

Sharmin