Monitoring post commencement of long term steroids in Duchenne muscular dystrophy (DMD)

This leaflet is for parents of boys with DMD. It describes the monitoring required after your son has started on a long term steroid regime.

Introduction

Your son has started on long term steroid by his neuromuscular consultant. It is therefore important you are aware of the monitoring your son will require whilst he remains on the steroid.

The following monitoring will be required regardless of which steroid your son has been prescribed and/ or which regime he has been started on.

Pre-steroid checks

The following baseline investigations will have been carried out by your neuromuscular centre or your local hospital prior to the commencement of the steroid.

• Vitamin D level
• Varicella (chicken pox) immunity
• Electrolyte levels in the blood
• DEXA bone scan
• Wrist x-ray
• Cardiology review, with echocardiogram
• Ophthalmology (eye) review

Steroids can cause increased appetite (weight gain), glycosuria (glucose in the urine), hypertension (high blood pressure), and in the longer term, cataracts and decreased bone density. It is necessary to regularly monitor the following:

• Weight
• Blood pressure
• Urine for glycosuria (glucose in urine)
• Eye health
• Bone health

This monitoring is required in addition to the regular physiotherapy, cardiac and respiratory monitoring which your son is likely to have in place already.

Post-steroid checks

We therefore recommend the following, once steroids are commenced:

• Twice monthly BP / urinalysis checks for the first three months (at GP's surgery)
• Annual eye checks (to check for cataracts)
• Annual DEXA scan
• Annual vitamin D / bone profile test to monitor bone health

Please note: abnormal results should be reported by your GP to the neuromuscular team or your son’s local hospital team.

Given the increase in appetite, it is important that a healthy balanced diet is provided, with a restriction of excess sugar and salt, to avoid excess weight gain whilst on the steroids. If required, a referral to a local dietitian can be considered in the future.

You should carry a DMD / steroid alert card stating which steroid, dose and regime your son is on. It is also a good idea for you to purchase a medical alert bracelet, so as to promptly inform medical professionals of your son’s condition and medication should he become unwell and require medical assistance.

Steroids must not be stopped suddenly. If for any reason your son misses his dose of steroids for 24 hours, especially if he is unwell, you must contact your local medical team, in case an alternative route of steroid is required in the interim. Please read the leaflet ‘Emergency steroid management plan for boys with DMD’ for further information.

Should you require any further information, please contact our neuromuscular nurse specialist or your local hospital team.

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