A Complete Patient Guide**

People taking long-term steroids (prednisolone, methylprednisolone, hydrocortisone, dexamethasone) can develop adrenal insufficiency because their adrenal glands “go to sleep” and stop making cortisol.
During tapering, the body must slowly “wake up” again — and this needs careful monitoring.

This guide explains the symptoms, tests, warning signs, and emergency precautions to keep you safe.

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⭐ 1. Why adrenal insufficiency happens

Long-term steroid use suppresses the HPA axis (hypothalamus–pituitary–adrenal system).
When daily steroid doses are reduced, your body must produce more of its own cortisol. This takes time.

If the steroid reduction is too quick, or the body is under stress, low cortisol symptoms appear.

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⭐ 2. Symptoms to watch for during steroid tapering

These are early signs that your body may not be keeping up with the reduction.

✔ Early, mild symptoms

• Fatigue / sudden exhaustion

• Muscle weakness

• Dizziness when standing

• Nausea or reduced appetite

• Flu-like aching

• Low mood, anxiety, irritability

• Brain fog

• Feeling unusually cold

• Worsening joint or muscle pain

These often improve if the taper is slowed or paused.

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⭐ 3. More serious symptoms of low cortisol

These symptoms suggest steroid levels are too low and the taper needs urgent review:

• Vomiting

• Persistent dizziness

• Very low blood pressure

• Severe fatigue (unable to function normally)

• Salt cravings

• Ongoing nausea preventing eating

• Faintness or near-collapse

These require medical advice (same day).

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⭐ 4. Emergency symptoms — possible adrenal crisis

Call 999 or go to A&E immediately if you develop:

• Severe vomiting or diarrhoea

• Collapse or inability to stand

• Severe dehydration

• Confusion

• Sudden severe abdominal or back pain

• Pale, clammy skin

• Rapid breathing

• Loss of consciousness

This is a medical emergency.
Patients normally receive 100 mg hydrocortisone IM/IV, but patients allergic to hydrocortisone require a pre-agreed emergency alternative — your endocrinologist must document this clearly.

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⭐ 5. Symptoms that mean you may need a temporary “stress dose” of steroids

Your cortisol requirement increases during physical stress.
If you have adrenal suppression, your body cannot produce this extra cortisol.

You may need a temporary increase in dose if you have:

✔ Illness

• Fever

• Chest infection

• Flu-like illness

• COVID

• Urinary infection

• Gastroenteritis

• Diarrhoea

• Persistent nausea

✔ Physical stress

• Injury

• Significant fall

• Severe pain

• Dental surgery

• Medical or surgical procedures

✔ Emotional stress

• Bereavement

• Panic attacks

• Trauma

If vomiting prevents taking steroids → seek emergency help immediately.

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⭐ 6. Tests used to monitor adrenal function during tapering

Doctors rely on a combination of symptoms and laboratory tests.

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✔ Morning cortisol (8–9 am)

A key test to assess recovery.

Typical interpretation:

• > 400–500 nmol/L → likely normal function

• 150–350 nmol/L → recovering / borderline

• < 100 nmol/L → adrenal insufficiency

(Exact thresholds vary.)

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✔ ACTH level

Shows whether the pituitary is trying to stimulate the adrenals.

• Low ACTH → still suppressed

• High ACTH → trying to wake adrenals

• Normal ACTH + low cortisol → gland slow to respond

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✔ Short Synacthen Test (SST)

Gold standard.
A small ACTH injection tests whether your adrenal glands can produce cortisol.

Used when:

• taper reaches low doses

• symptoms appear

• deciding if steroids can be stopped

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✔ Electrolytes (U&Es)

Low cortisol may cause:

• Low sodium

• High potassium (less common in steroid-induced insufficiency)

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✔ Blood pressure monitoring

Low cortisol → low BP, dizziness, faintness.

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✔ Glucose levels

Low-normal glucose and shakiness may occur during withdrawal.

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✔ Clinical symptom review

Symptoms are sometimes more sensitive than tests.

Doctors track:

• fatigue

• appetite

• dizziness

• illness triggers

• salt cravings

• mental state

• recovery after small dose increases

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⭐ 7. How tapering decisions are made

Tapering depends on:

• how long steroids have been taken

• current dose

• symptoms

• test results

• presence of illness

• rate at which symptoms develop

• allergy restrictions (pred/hydrocortisone allergy requires specialist handling)

General principles (not schedules):

1. Higher doses can reduce more quickly.

2. Taper slows dramatically near physiological levels
   (~4–6 mg pred-equivalent).

3. If symptoms appear → pause, slightly increase, or slow taper.

4. SST is used near the end to confirm recovery.

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⭐ 8. When to contact your medical team

Same day advice needed

• worsening dizziness

• persistent nausea

• new vomiting

• symptoms appear with each taper step

• fainting

• new severe fatigue

• any infection (urinary, chest, flu)

Urgent / A&E

• collapse

• severe vomiting/diarrhoea

• confusion

• severe abdominal pain

• unable to take oral steroids

• suspected adrenal crisis

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⭐ 9. What patients should do to stay safe

• Carry a Steroid Emergency Card at all times

• Keep emergency instructions from your endocrinologist

• Know your Sick Day Rules

• Ensure A&E or ambulance crews know about corticosteroid allergy

• Keep a written record of tapering plan

• Never stop steroids suddenly

• Be cautious during illness

• Know your emergency steroid plan (alternative if allergic to hydrocortisone)

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⭐ Final reassurance

Adrenal insufficiency during tapering is common, manageable, and often reversible.
By monitoring symptoms, using regular blood tests, and following specialist guidance, tapering can be done safely.

You are not alone — your endocrine team will guide every step, especially if allergies (to prednisolone or hydrocortisone) make your case more complex.

With careful observation and a clear emergency plan, serious complications are rare and preventable.

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