Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: lily on November 10, 2006, 10:49:05 PM

Title: liver biopsy / exjade update
Post by: lily on November 10, 2006, 10:49:05 PM

HI EVERYONE,

MY SON RECENTLY  HAD HIS LATEST LIVER BIOPSY, WHICH HE HAS YEARLY.  WHEN HE HAD THIS LATEST BIOPSY, HE HAD BEEN ON BOTH DESFERRAL AND EXJADE AT THE SAME TIME.  DESFERAL 5 X WEEK AND EXJADE DAILY AT 1250,  HE HAD ONLY BEEN ON EXJADE FOR APROXIMATELY 4MOS.

MY SON HAS A PRETTY BAD LIVER, HIS FIBROSIS IS AT A STAGE 1-2 WHICH HAS NOT CHANGED SINCE HIS LAST BIOPSY ONE YEAR AGO.   HOWEVER THE IRON CONTENT IN HIS LIVER WAS PREVIOUSLY AT 30,000 PLUS,  NORMAL I WAS TOLD NORMAL IS AROUND 2,000.  THIS YEAR THE IRON CONTENT  IN HIS LIVER HAS DROPPED TO 6,000, WHICH EVEN AMAZED BOTH HIS GASTRO AND HEMATOLOGIST.   WE BELIEVE THAT THE DECREASE IN IRON HAS BEEN DUE TO THE EXJADE.   BECAUSE OF THE ENORMOUS DECREASE, HE IS NOW DOWN TO 3 X WEEK FOR DESFERAL,  1500 DAILY OF EXJADE AND HOPEFULLY  SOON WILL BE COMPLETELY OFF OF DESFERAL ALL TOGETHER.

THIS IS JUST ANOTHER INDICATOR THAT EXJADE IS A GOOD IRON CHELATOR, AND FOR MY SON OBVIOUSLY MUCH BETTER THAN DESFERAL.  HIS ENDOCRINOLOGIST ALSO THINKS THAT THE DECREASE IN IRON HAS ALSO HELPED MAINTAIN HIS DIABETES UNDER GOOD CONTROL.  SO OVERALL I BELEIVE THERE ARE GREAT BENEFITS IN THE LONG RUN USING EXJADE.

TAKE CARE EVERYONE,
LILY

Title: Re: liver biopsy / exjade update
Post by: Christine Mary on November 10, 2006, 10:54:51 PM

Lily!!!

This is Fantastic news. This brings me great hope for my baby when she needs to chelate. You and your son must be so relieved! I am very happy for you that he is doing better.  :flowers :cheer :yahoo :bighug :veil :friday :party :love

Love,
Christine

Title: Re: liver biopsy / exjade update
Post by: jzd24 on November 10, 2006, 11:17:46 PM

Great news, Lily. I'm so glad his iron level has dropped down so much.  :happyyes :love Jean

Title: Re: liver biopsy / exjade update
Post by: Manal on November 11, 2006, 03:59:10 AM

We missed you Lily :hug

You have been away for so long. Welcome back and congratulations for the good news.

Keep it up

Manal

Title: Re: liver biopsy / exjade update
Post by: Andy Battaglia on November 11, 2006, 06:20:48 AM

Hi Lily,

I'm glad to hear son is doing so well with chelation. Many doctors are hesitant to try combination therapy using both desferal and Exjade so it's good to hear that in your son's case it has been both safe and effective. Please keep us posted on his progress.

Title: Re: liver biopsy / exjade update
Post by: §ãJ¡Ð ساجد on November 11, 2006, 07:47:09 AM

That is WONDERFUL!!!

This will surely increase people's confidence in Exjade and expect more from it than thinking "it is just a new/experimental drug"

Great news! :thumbsup

Take care, Peace!