Prednisone or Deflazacort

I don’t take any steroids so I am unable to help with this question, sorry

Grrrr .. i am having problems with the search function on the main site at the moment [problem reported]. I am not sure whether there is a leaflet or article on the main site about steroids and dmd.

Hi, i have a 13yr old boy with DMD. We were very late starting steroids because i was so worried about the side effects. Eventually , when my son started showing changes in his lung function and heart function we get scared and agreed to try steroids. We were promised that he would be monitored very carefully and that at any time we could stop. It was made very clear to us that he would need to be weaned off though and we could not just stop suddenly.
Splodge (my son) started taking prednisoline at a dose of 30mg every day and we held our breath. We spoke to him about the possible side effects and explained that he may feel hungrier so before he even started the steroids we shopped for healthy snacks and stocked the fridge up with fruit and other stuff that would be ok to snack on. He was very good and very mature about it all.
After a few days we noticed his appetite was growing but we kept talking to him the whole time and kept re-inforcing that he wasnt really hungry it was the tablets playing tricks, but still gave him the option to snack on fruit and homemade flap jacks etc. Despite keeping a very very careful eye on his diet splodge has gained lots of weight. This seemed to be the only side effect however and his lung function had actually improved and his heart only had very mild changes.
However, Splodge has been complaining for nearly a year of awful back pain, especially when he is moved to dress him, toilet him etc. We had spoken to both the local paediatrician and the specialist but were told to take paracetomol and watch his posture. Recently , after months of pressure he was xrayed and the results were a compression fracture of the spine….all that time with a fractured spine ! im so cross. Im cross that he wasnt listen to, im cross that they promised to monitor him and it was missed, but im angrier at myself for not listening to my instincts. I know lots of parents use steroids, it is now classed as the gold standard in treatment for DMD, but in all fairness there isnt anything else so it is in effect the ONLY treatment. We have decided to remove him from the steroids knowing full well the impact this may have. But steroids dont stop what will happen, they are not a cure. We felt the huge amount of extra weight was dangerous to his heart and lung function anyway. Its not something we have come to lightly but its the right decision for our child ….well if there ever is a right or wrong decision to be made. You have to make the choices for your son and your family,many many boys have been helped by the steroids but please be aware that if he does have steroids he may not be monitored as closely as they promised, Good luck Beth