Corticosteroids are steroids used in the treatment of Duchenne muscular dystrophy (DMD). They help improve muscle strength and function but have a range of side effects, including weight gain. Since children and young adults living with DMD have limited physical activity and mobility, managing weight is even more of a challenge. Close monitoring and healthy strategies can help.
The benefits of steroids in DMD
For many years, steroids have been the standard of care in DMD. One of two glucocorticoids are generally prescribed: prednisone (also called prednisolone) or deflazacort. Though prednisone has been approved by the Food and Drug Administration (FDA) for decades, its use in DMD is off-label. Deflazacort was approved for DMD in 2017. There is evidence it may lead to less weight gain than prednisone, but it has been linked to more behavioral issues and cataracts.
Both steroids’ anti-inflammatory properties help delay the progressive loss of muscle strength that occurs with DMD, and also delay the onset of cardiomyopathy and scoliosis. Steroid treatment is usually started soon after a child is diagnosed with DMD, at age 5 to 6.
Why do steroids cause weight gain?
Steroids are associated with a number of side effects, from mood changes to delayed puberty. One of the most common that families wrestle with is weight gain. Steroids cause an increase in appetite; when combined with the limited physical activity of boys with DMD, weight gain is a common result.
Steroids can also make the body hold onto water and change where the body stores fat, causing it to build in the face and neck. This gives the face a rounded, puffy appearance, called “Cushingoid appearance” or “moon face,” that may emphasize weight gain from DMD.
Read more about DMD treatment and care
Managing weight gain in DMD
Keeping weight under control is important for children and young adults living with DMD: maintaining a healthy weight helps reduce the stress on joints and muscles, prevents additional health problems and improves self-esteem. But it’s much easier said than done. As DMD advances and restricts physical activity, maintaining a healthy weight becomes even more challenging. These tips can help:
- Healthy diet: Aim for nutritious, balanced meals that are low in sugar, saturated fat and salt, and high in lean protein and vegetables.
- Avoid processed food: The additives in processed food can contribute to weight gain.
- Smaller portions: Serve smaller portions and wait before extra servings.
- No snacking: Eating between meals is often a distraction brought on by boredom, and can quickly add up.
- Sleep duration and quality: A good night’s sleep is beneficial in maintaining a healthy weight.
- Regular, adapted physical activity: Find ways to get moving. Swimming, cycling, stretching and physical therapy are all good options.
- Regular medical checkups: Your healthcare provider will keep a close eye on weight gain and may choose to adjust steroid doses if weight gain becomes an issue.
An important note of caution: Never suddenly stop steroids, even if they are causing weight gain. Suddenly stopping steroids can lead to a serious condition called acute adrenal crisis. If you are concerned about your child’s weight gain, talk to your care team about changing the kind of steroid being prescribed or its dosage.
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