Steroid side effects: recommended monitoring and intervention

Some of the more common long-term side effects of high-dose steroid administration in growing children are listed here. It is important to note that different people will have very different responses to steroids. The key to successful steroid management is to be aware of the potential side effects and work to prevent them or reduce them where possible. Reduction in steroid dose is necessary if side effects are unmanageable or intolerable. If this is unsuccessful, then further reduction or a change to another dosing regimen is necessary before abandoning treatment altogether.

• Steroid side effects
• Comment and recommended monitoring
• Points for you to think about and to discuss with your doctor

• General and cosmetic
  Weight gain
  Obesity
• Dietary advice needs to be provided to all families before starting a steroid regimen. They should be warned that steroids increase appetite.
• It is important that the whole family eat sensibly in order to prevent excess weight gain. Look for advice for the entire family regarding diet and nutrition.

• Cushingoid features (“moon face”)
• Fullness in the face and cheeks becomes more noticeable over time.
• Careful monitoring of diet and restricting sugar and salt intake will help with weight gain and may minimise Cushingoid features.

• Excessive growth of hair on the body (hirsutism)
• Clinical examination.
• This is not usually severe enough to warrant a change in medication.

• Acne, Tinea, Warts
• More noticeable in teenagers.
• Use specific treatments (topical prescription) and do not rush to change the steroid regimen unless there is emotional distress.

• Growth retardation
• Monitor height at least every 6 months as part of general care (height tends to be small in DMD even without steroid treatment.)
• Ask if your son is concerned about his short stature. If so, you should discuss with your doctor if he needs an endocrine check up.

• Delayed puberty
• Monitor development. Identify any family history of delayed sexual maturation.
• Encourage discussion about puberty. Ask your son if he has concerns about any delay.
  Discuss with your doctor about getting an endocrine evaluation if you or your son are concerned.

• Adverse behavioural changes
  (There is a lot more information about behaviour here)
• Identify any baseline mood, temperament, and ADHD issues. Be aware that these often temporarily worsen in the initial six weeks on steroid therapy.
• Consider if baseline issues should be treated prior to starting steroid therapy, e.g. ADHD counselling or prescription.
  It may help to change the timing of steroid medication to later in the day – discuss this with your doctor, who may also consider a behavioural health referral.

• Immune / adrenal suppression
• Be aware of risk of serious infection and the need to promptly address minor infections.
  Inform all medical personnel that the child is on steroids, and carry steroid alert card.
  Ensure that the steroid is not stopped abruptly.
  It is very important that someone on chronic steroids does not miss their dose for more than 24 hours at the most, especially if they are also unwell.
• Obtain chicken pox immunisation prior to starting steroid therapy; if not done seek medical advice if in contact with chicken pox.
  If there is a regional problem with TB, there may need to be specific surveillance.
  Discuss with your doctor how you would cope if there was a break in taking steroids, for example substituting prednisone equivalent if deflazacort is temporarily unavailable, or how you might need IV coverage during illness or fasting.
  Discuss use of intravenous (IV) “stress dose” methylprednisolone coverage for surgery or major illness.
  Give IV coverage if fasting.

• Hypertension
• Monitor blood pressure (BP) at each clinic visit.
• If BP is elevated, reducing salt intake and weight reduction can be useful first steps.
  If ineffective, your doctor will need to consider possible ACE or betablocker medication.

• Glucose intolerance
• Test urine for glucose with dipstick test at clinic visits.
  Enquire about increased passage of urine or increased thirst.
• Blood tests may be needed if urine tests are positive.

• Gastritis/ gastroesophageal reflux
• Look out for reflux symptoms (heartburn).
• Avoid non-steroidal anti inflammatory drugs (NSAIDs) - such as aspirin, ibuprofen, naproxen.
  Drugs and antacid can be used if symptoms occur.

• Peptic ulcer disease
• Report symptoms of stomach pain as this can be a sign of damage to the lining of the stomach.
  Stool can be checked for blood if anaemic or suggestive history.
• Avoid NSAIDs (aspirin, ibuprofen, naproxen).
  Drugs and antacid can be used if symptomatic.
  Seek gastrointestinal consultation.

• Cataracts
• Annual eye exam.
• Consider switching from deflazacort to prednisone if cataracts evolve that affect vision.
  Seek ophthalmology consultation. Cataracts will only need to be treated if they interfere with vision.

• Bone demineralisation and increased fracture risk
• Take careful fracture history.
  Yearly DEXA to monitor bone density.
  Yearly vitamin D blood level (ideally late winter in seasonal climates) and supplement with vitamin D3 if levels are low.
  Dietician assesses calcium and vitamin D intake.
• Vitamin D supplements may be needed depending on level in blood. Recheck vitamin D level again after 3 months on therapy.
  Weight-bearing activities can be helpful.
  Make sure that calcium intake is good in the diet and if not supplements may be needed.

• Myoglobinuria
  (Urine looks coca-cola coloured because it contains breakdown products of muscle proteins. This needs to be tested for in a hospital lab.)
• Enquire about abnormal colouration of urine after exercise – urine testing.
• Avoid vigorous exercise and eccentric exercises, such as running downhill or trampolining.
  Good fluid intake is important.
  Kidney investigations are needed if it carries on.

Information based on consensus statement (published in January 2010)