Steroids are currently the only medicine which has been proven to slow down the progress of DMD. But they can cause serious side effects.

This makes deciding if or when a child should start taking steroids very tough for their parents and doctors.

Steroids have been prescribed to children with DMD for over 20 years. They are now part of the international standards of care guidelines for DMD.

Doctors think that corticosteroids help because of their anti-inflammatory properties and by improving muscle regeneration.

The benefits of steroids are that they slow the progression of weakness in children’s muscles, reduce the development of scoliosis (curvature of the spine) and delay breathing and heart problems. On average, children who take steroids can walk for three years longer than children who don’t.

But there are side effects of the long-term use of steroids. The most common are weight gain, mood changes (irritability and hyperactivity) and a round, puffy face known as cushingoid. Other possible side effects include difficulty sleeping, headaches, stomach irritation, growth suppression, delayed puberty, raised blood pressure, cataracts, bone fractures and increased susceptibility to infection.

If you wish to find out more, please ask your nurse or doctor in the clinic.

Benefits Side Effects
  • Slows the progression of weakness in children's muscles
  • Reduces the development of scoliosis (curvature of the spine)
  • Delays breathing and heart problems
  • Weight gain
  • Mood changes
  • Round puffy face (known as cushingoid)
  • Difficulty sleeping
  • Headaches
  • Stomach irritation
  • Growth suppression
  • Delayed puberty
  • Raised blood pressure
  • Cataracts
  • Bone Fractures
  • Increased susceptibility to infection

The process for prescribing steroids

Children usually start taking steroids between four and six years old when their motor skills have stopped improving, but have not yet begun to decline.

There is recent evidence that starting earlier is more effective - but this must be weighed against the risk of side effects.

The type of steroids used are ‘corticosteroids’ (also known as ‘glucocorticoids’). They are not the same as the anabolic steroids used by some body builders.

Prednisolone and Deflazacort are the two types of corticosteroids prescribed for DMD. They each have benefits and side effects. Since Prednisolone is much cheaper, it is usually tried first.

Give yourself time to make this decision together with your child’s doctors. We encourage you to meet with the doctor just to discuss if your child should start taking steroids.

If your child does begin taking steroids, their doctor will monitor the benefits and side effects. If the side effects are outweighing the benefits, the doctor can reduce or taper off the dose completely.

It is very important that your child does not suddenly stop taking corticosteroids. Doses need to be reduced slowly – and only your child’s doctor can properly manage this process.

Checklist before starting steroids

You should make sure all these things are done before your child starts steroids:

  • Baseline assessments - Their current measurements for height, weight, urine, bloods, Dexa, FVC and, if possible, ECHO. Take these baseline assessments to your child's doctor appointments and to A&E if they have an emergency (if you can)
  • Routine immunisations
  • The missed dose procedure
  • The procedure if they have a sudden stressful event (such as illness, an accident or surgery where doctors need to increase dosage)
  • Medical alert bracelet
  • Completed emergency information card

For further information we recommend this comprehensive guide for families, published by Treat NMD, PPMD, UPPMD & MDA.

Steroids increase the risk that children will develop osteoporosis which is a thinning and weakening of the bones. Bisphosphonates may be recommended to help protect the bones. You should speak to the doctor about this.