----- Original Message -----

From: Paul Konanz

To: fapg <mailto:This email address is being protected from spambots. You need JavaScript enabled to view it.> 

Sent: Friday, November 21, 2008 3:18 PM

Subject: [FAPG] Discussions/Deferiprone


Just in case some of the group did not find Claudie Baleydier's good input  on Deferiprone at the bottom of the Email, ...


From Claudie:


Deferiprone is not a miracle , here , in France there was an open trial including few people , we have heard about the boy going out from his wheelchair but several other patients stopped taking Deferiprone, one of them nearly died (blood issue) and other found no change. So Deferiprone can be useful for some people but you have to be very cautious about.


23 de noviembre de 2008 12:48

Deferiprone messages from AFAF November 2008

http://health.groups.yahoo.com/group/FA_babelFAmily/message/2405 (FRA)



Translation by Marion Clark



Original message

From: C. Baleydier

To:  FA_babelFAmily, FAPG

Sent:  Saturday, Nov. 22, 2008

Subject:  FW: [afaf] deferiprone sorry it’s in French



Forwarded message

From:  Ludivine Arriberouge

To:  This email address is being protected from spambots. You need JavaScript enabled to view it. [French FA Association mailing-list]

Date:  Tuesday, 11/11/08

Subject:  Re:[afaf] deferiprone



I also participated in the deferiprone trial two years ago.  I had a reduced white cell count, like Marine Cartier.  It was Prof. Munich [sic] who called me personally to tell me to stop the treatment.  Following this unsuccessful trial I didn’t see any change, either for better or for worse.  On the other hand, I know that this drug has helped many other ataxians:  speech, fine motor skills, walking. 


In my case and especially in Marine’s case, it was the whole team that messed up and not just Munich [sic].  Now, they’ve corrected their mistakes and adapted the dosages. 


In addition, in October, I went to see Professor Munich [sic], and he had me do a blood test.  Later that afternoon he called me back because my blood sugar level was at 5.  That same evening at the hospital I learned that I had diabetes and that I was lucky to have avoided a coma.

Thanks, Munich [sic]…

Greetings to all, till next time



From:  Marine Cartier

To:  This email address is being protected from spambots. You need JavaScript enabled to view it.

Date:  Sunday, 11/9/08

Subject:  RE: [afaf] deferiprone


Professor Munnich gave me this treatment at too high a dose and I found myself with my white count dropping, to the point that I had 13 in my body.  At the time of the clinical trial, I had blood tests done every 15 days, so they saw perfectly well that my white blood cell count was falling from week to week.  The error of Prof. Munnich was in not looking at the blood tests that the lab was faxing to him.  I was saved at the very last minute, so if anyone is supposed to take this medication, please, be very careful. 

Best wishes,



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