MDF Magazine Issue 61 April 2020 (2)

Healthy
MEDICATIONS & SUPPLEMENTS
Originally published online by
Parent Project Muscular Dystrophy (PPMD)
The information on this page represents the recommended
standard of care for Duchenne muscular dystrophy. Most of
the care recommendations also apply to Becker muscular
dystrophy, but at older ages. Most, but not all, people with
Duchenne are males—but the care recommendations apply
to both males and females with Duchenne.
If you don’t understand any of the medical terms and concepts,
ask your healthcare providers. Take notes and ask
questions during your clinical visits.
MEDICATION & SUPPLEMENT FACTS TO
REMEMBER
Steroids are the only medicines known to improve strength
in people with Duchenne.
Other medications commonly prescribed for Duchenne
include those to support the heart, breathing muscles, bone
health, gastrointestinal symptoms, hormone levels, and to
manage pain.
USE OF SUPPLEMENTS IN DUCHENNE
There are many different medicines and supplemental
treatments that are used for Duchenne, although there is little
agreement (among parents, researchers, and clinicians) about
how useful they are.
The experts who created the Care Considerations guidelines
reviewed published data on substances that are sometimes
used for Duchenne treatment, to see if there was enough
information to make recommendations.
The experts found:
• The use of oxandrolone, an anabolic steroid (a different
type of steroid that is typically misused by athletes to
become stronger), is not recommended.
• The safety of Botox has not been studied for the treatment
or prevention of contractures and is not recommended.
• There was no evidence to support the wide use of creatine.
A randomised controlled trial of creatine in Duchenne did
not show a clear benefit. Anyone who is taking creatine
and has kidney problems should stop taking it right away.
• There is not enough information to make recommendations
about other supplements or other drugs that are sometimes
used in Duchenne treatment, including:
o Co-enzyme Q10
o Carnitine
o Amino Acids (glutamine, arginine)
o Anti-inflammatories/antioxidants (fish oil, vitamin E,
green tea extract, pentoxifylline)
o Herbal or Botanical Extracts
The experts agreed that more research is needed to
make recommendations about supplements and other
medications. They encouraged clinical trials on supplements
and encouraged families to be involved in registries like The
Duchenne Registry to gather more information.
MEDICATIONS THAT MAY BE PRESCRIBED IN
DUCHENNE
Below is a list of medications that may be prescribed by your
primary care providers or neuromuscular teams. NO
medication or supplement should be started without a
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