Steroids-Is it worth giving/taking?

I found this previous topic regarding steroids Prednisone V Deflazacort

There is a fact sheet you can download from the main site Steroids and DMD

Are you in contact with the Regional Care Advisor for your area? They may be able to give you more specific info and also talk through this with you.

There is also this group who ma be able to put you in touch with others who have had first had experience recently with steroids Duchenne Family Support Group .. they have a free phone number as well.

It’s so individual, it’s a hard choice. Our son went on them aged 5 but they didn’t hold off/ improve anything for his legs- he stopped walking age 8. We took him off his Prednisolone age 9 (he was on a 7 days on, 7 days off regime). But, his arms weakened quite quickly once off them and his lung function is decreasing too. ( He’s 12 now). What is so hard is not knowing if keeping on them would have made any difference- its unknown. Our gut feeling, in a parental ‘you know your child best’ way is that they were doing him no good. His weight was increasing( I always think that it can’t help putting more strain on their heart) his mood swings were difficult for him to cope with and he had lots of trouble sleeping. Just make an informed decision. There’s no actual proven right/ wrong. We’re the only family I know who’s son isn’t on them still but I feel that for our son it’s been the right thing. Good luck!!