Combination Chelator Study Results Published: CAF Calls for Access to L1 in US

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Offline Andy Battaglia

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A new study has shown that combination therapy using desferal along with deferiprone (L1, Kelfer, Ferriprox) for chelation has demonstrated that the combination is more effective than either drug alone, at removing heart and liver iron. Heart failure is the leading cause of death among thalassemics and the effect of adding deferiprone to the chelation mix is a noticeable improvement in heart function. As a result of these findings, CAF has called for the approval of deferiprone in the US.

From the Cooley's Anemia Foundation site, http://www.thalassemia.org/bodies/body325.php

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“This study adds direct, prospective evidence to other studies which have suggested that deferiprone is more effective than deferoxamine in removing iron from the heart and improving cardiac function, and also demonstrates that it is more effective in restoring endothelial function.” stated CAF National Executive Director Gina Cioffi, Esq. “With iron-related cardiac complications the leading cause of death among our patient population, there is a great need for physicians in the United States to have the option of prescribing deferiprone for those patients whose cardiac health puts them in serious danger. We hope that patients in the United States will soon have the same alternatives for iron chelation therapy as patients in the European Community.”

Thalassemia Patients and Friends has long held this stance. Lisa felt that L1 would've given a chance that desferal did not, as her ability to tolerate desferal had greatly decreased over time. Let's hope that L1 soon finds approval by the FDA.

Andy

All we are saying is give thals a chance.

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Offline vic

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thanks andy, i had gone to a talk at a childrens hospital late last year where he discussed the same results.  when i speak to christians doctors about it they are quite skeptical.  i guess the results speak for themselves.
regards vicky

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Offline Ash

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Ehh, and they just found this out the year was 1995 when a friend I knew started combination theraphy.

"Amit you were the pioneer"

unfortunately he passed away due to thal complications

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Offline Smurfette

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COMBINATION THERAPY IS THE BEST WAY TO GO...YES IT DOES WORK...BUT SINCE IT WORKED SO WELL WITH ME, I STOPPED USING DESFERAL NEARLY 2YRS AGO...AND MY FERRITIN LEVELS HAVE BEEN LOW... I NEVER HAD ANY IRON IN MY HEART TO BEGIN WITH SO I AM ONE OF THE LUCKY ONES....

ACTUALLY I STARTED THE TRIAL BACK IN THE 90'S SO IT WORKED WELL WITH ME THEN AND NOW ITS EVEN BETTER...

NO MORE PUMP  :rotfl

I am also one of the believers as it has been working for me.
 :clap :clap

 

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