Kids Health Info

DMD - Corticosteroid medicine

  • DMD (Duchenne muscular dystrophy) is a serious neuromuscular disorder and the most common form of muscular dystrophy in children. Please see the Kids Health Info factsheet: DMD for more information.

    Corticosteroids are the only medicines that have, so far, been proven to slow the progression of muscle weakness in children with DMD. Research has shown corticosteroids help preserve muscle strength and function longer in boys with DMD, and may also help preserve the heart and breathing muscles. 

    What are corticosteroids?

    Corticosteroids are man-made drugs. They are similar to the steroid hormone cortisol which is produced in the body by the adrenal glands.

    There are several different types of corticosteroid. The form most commonly used in Australia is prednisolone, which comes as a syrup or tablet. Deflazacort is another corticosteroid which has been shown to be helpful for children with DMD but it is not widely availalbe in Australia.

    What are the benefits of treatment with corticosteroids?

    Recent studies have shown that children with DMD who take corticosteroids:

    • Keep their ability to walk for longer.  
    • Maintain arm and hand muscle strength for longer.
    • Are less likely to develop other complications of DMD, for example:
      • they experience positive benefits to the heart muscle
      • the preservation of the function of the breathing muscles
      • development of spinal curvature (scoliosis) is slowed, which may delay the need for surgery.

    It's important to note that the benefit of treatment with corticosteroids varies between children. Strength is only maintained as long as treatment is continued, and the benefits of treatment will decrease after treatment is stopped.

    What are the side-effects of corticosteroids?

    Corticosteroids have many possible side-effects. The chances of these occurring depend on the individual child and the dose of corticosteroid they are taking. The most common steroid side-effects are:

    • weight gain
    • roundness of the face
    • mood changes (irritability, hyperactivity)
    • slower growth rate (decreased height)
    • loss of calcium from the bones (osteoporosis)
    • development of cataracts
    • a slight increase in body hair, especially on the arms, legs and back.

    Other possible side-effects include difficulty sleeping, headaches, mild stomach aches, mild acne, and dry skin.

    There are also some rare side-effects that you can discuss with your child's neurologist, including high blood pressure, diabetes, increased chances of infections, thinner skin, increased sweating, dizziness, depression, and/or hallucinations.

    It is important that you talk about any possible side-effects with your child's doctor. Always talk with your GP or neurologist before giving any additional or new medication, including over-the-counter, complementary or 'natural' medicines.

    It is very important that your child does not suddenly stop taking corticosteroids.  The body becomes used to their effect and needs time to adjust when they are stopped.  Therefore, the dose needs to be reduced slowly.

    When to start corticosteroids?

    The right time to start corticosteroids is different for each child. A decision should be reached after discussion between the child's parents, doctor and allied heath care providers.

    It seems children benefit the most by starting corticosteroids while their muscles are still strong. However, even for children with advanced muscle weakness, corticosteroids may still be helpful in increasing the strength of the arms, lungs and heart.

    Important things to know when starting corticosteroids

    Checking for side-effects
    Your child should have regular general health checks to keep an eye out for possible steroid side-effects. Health checks should include:

    • measurements of height and weight
    • blood pressure
    • urine screening (for sugar)
    • breathing (lung function tests
    • muscle strength testing
    • calcium in bones (by a bone density, or DEXA, scan)
    • eye check-up (for cataracts).

    Immunisations
    Most children should have had all their immunisations by the time corticosteroid therapy begins. Children taking corticosteroids should not have live vaccines such as the MMR (measles, mumps, rubella) vaccine.

    If your son has not had chicken pox, it is important that he has the varicella (chicken pox) vaccination before starting corticosteroids. Chicken pox infection can be very severe in children on corticosteroids.

    Important things to know when taking corticosteroids

    Reducing osteoporosis
    Plenty of calcium and vitamin D are vital to reduce osteoporosis in children on long-term corticosteroid treatment. Dietary supplements of vitamin D and calcuim are generally recommended for children on regular steroid therapy.

    Minimising weight gain
    Your child should have a low fat, low salt diet to assist in controlling weight gain. Limit red meats and saturated fats, and encourage fresh fruit, vegetables, water and fat-free milk. Plenty of sunshine and exercise is also very helpful in a variety of ways.

    Taking corticosteroids

    • Your son's steroid dose may change, depending on his weight and any side-effects he may experience. It is important you do not change the dose without the doctor's advice.
    • Weight gain is less if the medication is taken in the morning. A single daily dose with breakfast is usually best.
    • If a dose is missed it can be taken at lunch time on the same day but not later. Do not take a double dose if one is missed. See your doctor if your son misses more than one day of medicine.
    • If your son becomes very unwell, he may need to take higher doses (called stress doses) or be given intravenous (IV) corticosteroids (i.e. through a drip).  This is because our bodies use a natural steroid - cortisol - to help us react to sudden stressful events such as infections, accidents or surgery. When a person takes steroids, the adrenal glands stop producing this natural steroid and so the body can't react normally to these stressful events.
    • Corticosteroids do not usually interact with other medicines.  However, it is important to check with your pharmacist or doctor before starting any other medications, including non-prescription, complementary or 'natural' medicines. If your child is involved in a research trial he should not take other medications without discussing this first with the doctor (usually the neurologist) coordinating the trial.

     

    Make sure people know your child is taking corticosteroids
    It is a good idea for your son to wear a MedicAlert bracelet at all times. You can buy these from the RCH or any pharmacy. The bracelet should state that he has Duchenne muscular dystrophy and is taking corticosteroids. If he is very sick or has an accident, this will tell the doctor treating him about his condition and the need for intravenous corticosteroids.

     

    Key points to remember

    • Corticosteroids can help maintain muscle strength and function in boys with DMD, and may also help keep the heart and breathing muscles strong. 
    • Children usually benefit the most when they start taking corticosteroids while they still have good muscle strength.
    • Corticosteroids must never be stopped suddenly. 
    • The steroid dose may need to change if your child is acutely unwell, gains excessive weight or for other reasons.
    • Steroids can have side-effects which you need to understand and discuss with your child's neurologist. The benefits usually outweigh the possible side-effects.
    • Always check with your child's doctor before your child takes any other medications, including those that don't need a prescription - especially if your son is in a research trial.

    This information has been developed to give you an understanding of corticosteroid use for your son's condition. It is not intended to replace discussion with your doctors and other health professionals, so feel free to ask any questions you may have after reading this.

    For more information

     

    Developed by the RCH Children's Neurosciences Centre in consultation with RCH Pharmacy.  First published Dec 2007. Revised October 2010.



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Disclaimer
This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital, Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.