CureDuchenne Cares is pleased to share important information about steroids use for Duchenne patients.
Use of corticosteroids is part of the standards of care for Duchenne patients. Chronic use of steroids is accompanied by side effects, but rapid withdrawal of steroids can lead to serious, life threatening conditions as well. This was exemplified in the unfortunate story of PJ Nicholoff, a Duchenne patients who had been on steroids for 25 years when he ended up in hospital with several fractures. A combination of factors, including the rapid withdrawal of daily steroids, sadly contributed to his death. To raise awareness and increase correct action upon hospitalization of patients, a panel of experts in neuromuscular steroid care has developed a protocol to address rapid withdrawal from steroids, and subsequent acute adrenal suppression, which can be a life threatening condition. It is our hope that families and medical providers, armed with this information, can prevent future occurrences of acute adrenal insufficiency.
For more information and to download the “PJ Nicholoff Steroid Protocol,” please click here.