We started our son on Deflazacort at the recommended daily dosage and are wondering if anyone has been prescribed/tried alternate regimens for it, i.e, alternate days, weekends, 10 days on/off, etc and what their experience is in terms of strength and growth.

 

Thanks for any inputs.

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I would like to ask about the purpose of this study which compares three ways of giving Steroids to determine which of the three ways (increases muscle strength the most) supposed to start soon .http://clinicaltrials.gov/ct2/show/NCT01603407?term=Duchenne+muscul...
Actually,the words between parenthesis (increase muscle strength the most) graped my attention because I asked myself:Is there any doubt that the daily regimen increases the muscle strength the most?!!the amount of cortisone in daily regimen is twice as 10 days on/off,so what is the importance of this comparision?!
If the trial purpose was to determine the less side effects then no wonder.
I am not sure if you got my point,but hopefully I could express my point in the correct way.
I switched my son to 10 days on/off so I need more information about this regimen,mainly the 10 days off(how my son will be during over this period!
 
Thank you very much.
 
 

We were on the 10 D On /Off regime for last 3 to 4 years and recently started noticing that during the on days my son was having difficulty going to bed. Doc have shifted us to have the full dose in the morning as compared to 70% in the morning and 30% in the evening. Just something to watch out for during the On Off regime.

I do see that some folks have posted here kids have been on Deflazacort 10 D On /Off regime. I did not know that this is a prescribed dosage. Pl also check out the dosing trial at http://clinicaltrials.gov/ct2/show/NCT01603407?term=deflazacort&.... The only dosing regimes under observation are 

  1. Prednisone 0.75mg/kg/day
  2. Prednisone 0.75mg/kg/day switching between 10 days on and 10 days off treatment
  3. Deflazacort 0.9mg/kg/day.

 

Please,let me know what to do if I decided to switch my son who is on 10 days on/off 30 mg to daily regimen but, with smaller dose?I mean in case of deterioration, and daily regimen will be the best choice,so is it easy to put him on 21 mg instead of 30 mg (as example) and how to do this?Is tapering this dose will be needed?note that 21mg /day is more than 30 mg 10 days on/off!

I wish my point is taken.

 

Please,answer is needed!

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