Comment

Comment by Shelly on April 5, 2015 at 4:39am

Hi Deb
Definitely watch out for the side effects and ll work accordingly.

Comment by Deb Robins on April 5, 2015 at 4:29am

Shelly I know you are in a very isolated part of the country in terms of neuromuscular clinics for boys with DMD, but I have seen & heard of a few boys in Qld walking up to late teens who have been on prednisone since very young - around 4yrs. My own son started prednisone & then deflazacort in the 90's but was not a good responder apparently. He has a different deletion so he may also have been more severe.  He was also 8 but the steroids gave him the gift of 18 months without falls before he slipped off his ambulation plateau.   I'm also in a less populated area,  nevertheless I have  heard those who have travelled extensively in many countries,  report similar side effects with height and weight and cushingoid appearance with use of both steroids. I have heard that you can make a case for Deflazacort here, if Prednisone is causing severe behaviour problems as this side effect definitely seems to be less of an issue with Deflazacort. 

Comment by Shelly on April 4, 2015 at 11:00pm

Hi Andrew
How can convince my doctor for deflazacort!!!? As its SOS in australia..

Comment by Andrew Kerr on April 4, 2015 at 10:26pm

Hi Shelly,

Generally deflazacort has fewer side effects. 

Comment by Shelly on April 4, 2015 at 10:12pm

Hi all
My son is missing exon 45. He is 8. Doctors prescribed him prednison . Can anybody suggest what should be followed with lesser side effects. Predinisone or deflazacort

Comment by Tuyet Lan Thi Tran on July 26, 2014 at 5:02am

Dear All

Can anyone help me by le me know what exon skip for 46-50 deletion if you are have all experience about that. My son is now 3.5 years old.

 

Comment by MEHMET ASIK on September 11, 2013 at 4:59pm

Exon 44 deletions. Could we discuss?

Comment by Slaven Pasalic on January 7, 2013 at 7:29am

Hello
My son Nikola has a deletion of 45-50.
He has 3 years.

Comment by Moria McMillen on June 6, 2012 at 11:51pm

Keith and Andrea, Thank you both so much for the information! I will sign up for the new group.

 

Comment by Keith Van Houten on June 6, 2012 at 9:04pm

Moria - I also wanted to mention that boys whose phenotype don't match up with their genotype (like an in-frame DNA mutation resulting in a Duchenne type progression) is what's referred to as an "outlier".  There's another discussion group on here re: outliers if you're interested...

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