Advice for patients on long-term steroid treatment

Are you on long-term steroid treatment?

Patients who take long-term (greater than three weeks) oral, inhaled, or topical steroids for medical conditions, are at risk of developing secondary adrenal insufficiency (resulting in very low cortisol levels) and becoming steroid-dependent (to artificially replace cortisol).

The omission of steroids for these patients can result in an adrenal crisis as they no longer produce their own cortisol, which is a medical emergency that if left untreated can be fatal. For example, if a steroid-dependent patient had a road accident and was admitted to A&E without medical staff knowing that they needed daily steroid medication (such as if they were unconscious or otherwise unable to communicate) then they would be at high risk of adrenal crisis.
NOTE: it is often desirable for a patient to reduce their dose of oral steroids in order to minimise adverse effects and symptoms. If this is achieved the steroid-dependent patient can be switched to a form of oral steroid that should be less prone to adverse effects (i.e. hydrocortisone) in order to prevent them from going into adrenal crisis.

Cortisol is also part of your body’s system to cope with stress. Consequently, if you are steroid-dependent on e.g. hydrocortisone you will need an increased dose if your stress levels increase – this can be caused by many things including infection, becoming acutely ill, suffering trauma, or undergoing surgery for example.

To ensure clinical staff are always aware of the risk of adrenal crisis, consequently the new national guidance was issued in August 2020 which promotes a new patient-held Steroid Emergency Card to help healthcare workers identify patients with adrenal insufficiency and provide information on emergency treatment if the patient presents in an emergency. The card also provides details of the prescriber, drug, dosage, and duration of treatment.

Where can patients get a steroid card?

Cards can be obtained from GPs, hospital teams and community pharmacies. More information can be found here.

The card can also be downloaded as a PDF, and added as a lock screen to mobile devices. Learn more from the Addison’s Disease Self-Help Group.