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.

Views: 726

Reply to This

Replies to This Discussion

We have not.  Kyle is on a 21mg per day dosage.  Not sure what the benefits are of alternating, but it's something I may bring up at his next doctor appointment in early June.

 

Our son started Deflazacort 2.3yrs ago,w/18mg daily,then bumped to 21mg.We noticed that he didn't gain any hights,for long period since starting Deflazacort,the last visit in March, w/Dr Finkel at chop he decide to lower the dose to 15mg/daily,for three months then measure him again if No growth he'll lower the dose again to 12mg/daily.It seem that Deflazacort have a direct influence on his growth,since he been measuring almost 48inches.

thanks donna/djamel...we are also worried about the height, hence the question..

there is a theory that if a gap of 48 hrs is given between the doses of the steroids, the negative effect on the height (due to early epiphyseal closure & interference with growth hormone secretion) is reduced...it is likely that the dose would have to be doubled for alternate day regimen...i think there were some studies done for prednisone but am not aware of any for deflazacort.

djamel,

 

are you (or dr finkel) concerned with the reduced benefits of the steroids which your son might get as a result of the reduced dose? he may gain height, but lose strength, for example?

djamel fathi said:

Our son started Deflazacort 2.3yrs ago,w/18mg daily,then bumped to 21mg.We noticed that he didn't gain any hights,for long period since starting Deflazacort,the last visit in March, w/Dr Finkel at chop he decide to lower the dose to 15mg/daily,for three months then measure him again if No growth he'll lower the dose again to 12mg/daily.It seem that Deflazacort have a direct influence on his growth,since he been measuring almost 48inches.

Of course We're,He reduced his Deflazacort doseage about a month ago,so far he still very active ride his two wheel bike,run around,,,We're monitoring his strenght very closely.If any change in strenght then We'll reconsidere to put him back on the initial dose.

Any experiences,with any one,about strenght and reduction in dose?

how about asking dr finkel about alternate day high-dose for height gain as well as strength?

djamel fathi said:

Of course We're,He reduced his Deflazacort doseage about a month ago,so far he still very active ride his two wheel bike,run around,,,We're monitoring his strenght very closely.If any change in strenght then We'll reconsidere to put him back on the initial dose.

Any experiences,with any one,about strenght and reduction in dose?

Our son (now 22 with DMD) has been on alternate day therapy with Deflazacort (.9mg/kg and ending up at 48 mg) since he was 9 yrs old.  He walked until he was 16 and had heel cord surgery.  His height ended at 5'4".  He entered puberty when he was supposed to (around 13) and he is still able to do his own transfers from chair to bed, etc.  I know he is a little unusual, but we really feel this has been the best for him. The boys' bodies really need to see the steroid often (certainly more often than every 10 days) in order for it to really work properly.  I hope this has helped.
thanks susan, this is quite good...what is your son's mutation and what kind of supplements does he take?

Has anyone tried 10 days on/off and got good result,please?

I am thinking to switch to this regimen

Hi,

I am going to switch my son to 10 days on/off.My son was on daily DFZ,he is 7 years old.

Please,help me with this new decision.Any experience with this regimen?

I am worried that my son's strength may decline.

He is on Idebenone also.

My son's doctor has recommended 10 days on/off to us. He will start in the new year when he's 4.

Thinking of trying alternate day deflazacort to help with growth. Our clinic had limited experience with this, as they have only tried it with one boy who felt too ill on this regimen. Anyone other than Susan Hemphill and her son Bill tried this? Don't want to make Simon feel sick, as he has always fared well with daily steroids at breakfast and supper time. I didn't trust the school to give a luchtime dose.

Thanks in advance for sharing your experiences with this.

A.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service