Our son has been having difficulty tolerating high dosage weekend dosing of Deflazacort (lots of behavioral side effects) We are concerned going to daily dosing because of long term side effects. Is anyone else using other dosing schedules such as alternate day dosing, 10 days on 10 days off, etc?

Thanks,
Nana

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Hi Ofelia, how are you? Are you sure about the high weekend dosing preserving the growth? I believe a recent study (posted on mda) concluded that there was no difference (using prednisone) between high wknd vs daily.

My bad, I read this one: http://quest.mda.org/article/clinical-trials-july-august-2008#compr...

“Effects on strength maintenance were similar in the two groups, but time required to get up from the floor was better in the daily prednisone group.

Growth retardation, a known prednisone side effect, was less severe in the two-day, high-dose prednisone group, but weight gain, another serious side effect, was the same in both groups after a year. AAN”

Now I see that later on the published a differnet story: http://quest.mda.org/news/dmd-daily-weekly-prednisone-treatment-res...

Well, then I don’t see an advantage of using weekend dosing. I wonder if any of these regimes preserves some vertical growth, bone density etc. At first I thought that 10 days on/off should do it but then I read that the benefit of this one is the worst among other regimens…

Great discussion!! My husband and I are in the same boat with Deflazacort. Our son's behaviors are unbearable, a change needs to happen. We were wondering about every other day dosing and or 10day/off regimen. It is to the point where we may stop altogether. He takes meds for ADHD also, it helps somewhat, but not with his newest behaviors, aggression and hurting others. Such a difficult decision, we don't know what to do.

Deflazacort tends to make psychological symptoms if done on alternating days, furthermore it can have a negative physical effect. I have tried nearly dozens of ways and its best to listen to the doctors advice.

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