Hydrocortisone dosing in adrenal insufficiency

Why adrenal insufficiency can happen in people with aspergillosis

Many people with aspergillosis, particularly those with asthma-related conditions such as allergic bronchopulmonary aspergillosis (ABPA) or more severe chronic lung disease, need treatment with steroid medicines at some point. These treatments — often essential to control inflammation, protect the lungs, and improve breathing — may include repeated or long-term courses of steroids such as prednisolone.

When steroid treatment is used over time, it can reduce the body’s own production of cortisol by the adrenal glands. In some people, the adrenal glands do not fully recover, leading to adrenal insufficiency. Cortisol is a vital hormone that helps the body manage energy, illness, infection, and physical stress. When it cannot be made reliably, hydrocortisone replacement is needed to keep the body safe and functioning.

In this situation, hydrocortisone is prescribed to replace the cortisol your body can no longer make, usually after prednisolone has been reduced or stopped, or when prednisolone is no longer needed to control lung inflammation but adrenal support is still required.

Adrenal insufficiency in people with aspergillosis is not a failure and not something you have caused. It is a recognised consequence of necessary treatment for a serious, long-term condition. With the right information, a personalised dosing plan, and medical support, adrenal insufficiency can be managed safely alongside aspergillosis.

A patient guide to everyday (basal) dosing, higher-dose needs, and short-term stress dosing

If you take hydrocortisone because you have adrenal insufficiency, understanding how your dose works — both day to day and during illness or stress — is essential for your safety and wellbeing.

This guide explains:

What your basal (everyday) dose is for
Why some people need higher basal doses
When and how stress dosing is used — and why it is short term
Why some doctors may hesitate — and how to work safely with them
Where to find trusted patient and clinician resources

Very important first point ❗

Any changes to your hydrocortisone dose must be agreed in advance with a doctor or specialist nurse who knows your adrenal insufficiency.

This includes:

Your usual daily dose
Your stress-dosing (“sick day”) plan
Emergency injection instructions

This guide does not replace medical advice.
It is designed to help you understand your treatment and communicate clearly with healthcare professionals.

1) Your basal (everyday) hydrocortisone dose

What the basal dose is for

Your basal dose is the hydrocortisone you take on an ordinary day, when you are not ill or under unusual stress. Its purpose is to:

Replace the cortisol your body cannot make reliably
Support normal daily function (energy, blood pressure, mood)
Help your body feel stable and safe
Reduce the risk of chronic under-replacement

It is replacement, not treatment for inflammation.

A key point many patients are not told

Being consistently under-replaced does not help adrenal recovery.

Ongoing symptoms such as:

Constant exhaustion
Dizziness or nausea on standing
Brain fog or low mood
Poor tolerance of everyday stress
Frequent “crashes” or infections

can delay recovery, not speed it. Stability supports healing.

What doctors usually mean by a “physiological” dose

Most adults naturally produce the equivalent of about 15–25 mg of hydrocortisone per day.

Doctors aim for a dose in this range and adjust for:

Body size
Activity level
Other medical conditions
Individual response

This is replacement, not “high-dose steroids”.

How basal hydrocortisone is usually taken

To mimic the body’s natural rhythm, doses are often split:

A larger dose in the morning
Smaller doses later in the day
Avoiding late evening doses where possible

This supports:

Energy and blood pressure
Sleep
Mood and concentration

Signs your basal dose may be too low

Tell your doctor if you have persistent:

Severe fatigue despite rest
“Wired but empty” feeling
Dizziness, nausea, or salt craving
Poor concentration or memory
Low mood or anxiety
Frequent need for rescue or stress doses

These symptoms matter even if blood tests look reassuring.

Blood tests are only part of the picture

Cortisol and ACTH tests:

Help with diagnosis
Are less helpful for adjusting daily dose
Do not always reflect how well you function

Doctors experienced with adrenal insufficiency rely heavily on how you feel and cope day to day.

The right balance

Rather than “as low as possible,” a safer aim is:

Low enough to avoid overtreatment, but high enough to live a stable, functional life.

Living in constant deficit is not success.

2) When a higher basal dose may be appropriate

Some people with adrenal insufficiency — particularly those with chronic illness — may genuinely need a higher basal hydrocortisone dose (for example 25–30 mg/day).

This does not automatically mean overtreatment.

Well-recognised examples include:

Chronic inflammatory lung disease (including ABPA)

Ongoing airway inflammation and immune activation
Recurrent infective or inflammatory flares
The body may never be in a true “resting” state
Standard doses may leave patients under-replaced
A stable higher dose can reduce repeated stress dosing and improve daily function

Frequent infections or slow recovery

Repeated illness or prolonged recovery
Frequent “temporary” stress dosing just to cope with everyday life

Long-standing steroid-induced adrenal insufficiency

Years of prednisolone or similar treatment
Deep suppression of the adrenal system

Larger body size or higher metabolic demand

Cortisol needs vary with body size and activity

Autonomic symptoms or low blood pressure

Postural dizziness or faintness
Often benefit from a higher morning dose

Clinical clue:
If someone repeatedly needs stress dosing just to manage ordinary days, their basal dose may be too low for their current physiology.

Important reassurance

Higher basal doses can be appropriate, temporary, or longer-term
They do not automatically prevent recovery
Ongoing inflammation and repeated physiological stress suppress recovery more than adequate replacement
Doses should always be prescribed, documented, and reviewed

3) Stress dosing — when your body temporarily needs more

What stress dosing means

A healthy body automatically makes more cortisol during:

Illness or infection
Fever
Vomiting or diarrhoea
Injury or trauma
Severe pain
Surgery or medical procedures
Major physical stress

If you have adrenal insufficiency:
➡️ your body cannot do this, so doctors prescribe stress dosing in advance as part of your safety plan.

Stress dosing is essential — but it is short term

Stress dosing is meant to last only as long as the stress lasts.

It covers a temporary increase in need, not your everyday requirements.

What “short term” usually means

Stress dosing may last:

24–48 hours for minor illness or fever
Several days for infections or recovery from injury
During and immediately after surgery or procedures

Your doctor should advise:

When to increase
How much to increase
When and how to return to your usual dose

Why stress dosing should not continue indefinitely

If higher doses are needed for longer, something usually needs review:

Infection or inflammation has not settled
The basal dose may be too low
Another medical problem is present

If stress dosing is still needed after the original stress has passed, it’s time to talk to your doctor.

Stepping back down safely

Doctors usually advise returning to baseline
Sometimes a 1–2 day step-down is used
You should not remain on stress doses “just in case”

Stress dosing does NOT:

Stop adrenal recovery
Mean you are “failing”
Cause long-term harm when used correctly

Not stress dosing can:

Make you seriously unwell
Delay recovery
Lead to adrenal crisis

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https://www.endocrinology.org/media/3705/nhs-steroid-card-front.jpg?format=webp&quality=20&width=700

4) Why some doctors seem hesitant

Doctors outside endocrinology (GPs, A&E, ward teams):

Are trained to minimise steroid use
Often think of steroids only as anti-inflammatory drugs
May rarely manage adrenal insufficiency

What they may not realise immediately:

Your hydrocortisone is replacing a missing hormone — it is essential, not extra.

5) How to advocate safely (with medical backing)

It is appropriate to say:

“I have adrenal insufficiency. My doctor has advised stress dosing during illness to prevent adrenal crisis.”

If you have them, show:

Your Steroid Emergency Card
A written stress-dosing plan
A clinic letter or summary

6) Trusted resources & further support (with links)

The following organisations provide reliable, clinician-endorsed information on adrenal insufficiency, hydrocortisone replacement, stress dosing, and emergency care.
They are widely recognised by NHS endocrinology teams and safe to share with patients, families, and healthcare professionals.

UK patient and professional resources

Addison’s Disease Self-Help Group (ADSHG)
Website: https://www.addisonsdisease.org.uk

What it offers:

Clear explanations of basal vs stress dosing
Patient-friendly sick-day rules
Emergency hydrocortisone injection guidance
Downloadable patient leaflets used in NHS clinics
Webinars, helpline, and peer support

Why it’s useful:
ADSHG explicitly supports individualised dosing and crisis prevention.

Society for Endocrinology
Steroid Emergency Card & adrenal crisis guidance:
https://www.endocrinology.org/clinical-practice/steroid-emergency-card/

Why it’s useful:

Highly trusted by doctors, A&E, and ward teams
Clear professional wording that reassures non-specialists
Supports rapid decision-making in emergencies

NHS (England)
Steroid Emergency Card information:
https://www.nhs.uk/conditions/steroid-emergency-card/

Why it’s useful:

Official NHS backing
Useful for legitimacy in emergency or inpatient settings

International patient resources (useful supplements)

Endocrine Society
Patient information on adrenal insufficiency:
https://www.endocrine.org/patient-engagement/endocrine-library/adrenal-insufficiency

Why it’s useful:

Clear explanations of cortisol physiology
Conservative, authoritative tone
Helpful for patients seeking international consensus

National Adrenal Diseases Foundation (NADF)
Website: https://www.nadf.us

What it offers:

Practical sick-day rules
Emergency preparedness guidance
Injection training resources

Particularly helpful for patients with long-standing adrenal insufficiency or frequent illness.

Resources especially relevant for ABPA & chronic lung disease

National Aspergillosis Centre
Website: https://mft.nhs.uk/wythenshawe/services/infectious-diseases/national-aspergillosis-centre/

Why it’s relevant:

Specialist centre where ABPA and adrenal insufficiency often overlap
Supports personalised care plans in complex disease

Aspergillosis Trust
Website: https://www.aspergillosistrust.org

Why it’s useful:

Patient-focused education and advocacy
Helps explain the chronic physiological stress of ABPA
Supports conversations about higher basal hydrocortisone needs

Quick-access patient checklist (phone / wallet)

Patients are encouraged to keep:

Steroid Emergency Card
Sick-day rules (ADSHG)
Personal stress-dosing plan (agreed with doctor)
Clinic letter or summary

Many patients keep photos of these documents on their phone for emergencies.

Final reassurance

These resources support — not replace — medical advice.
They exist to help patients stay safe, informed, and confident when managing hydrocortisone and communicating with healthcare professionals.

by GAtherton

When treatment itself causes harm: an important message for people with aspergillosis

For most people, following medical advice is the safest and most appropriate course of action. However, for some people living with aspergillosis or other long-term lung conditions, treatment itself can occasionally cause harm — particularly when adverse drug reactions are not recognised early.

Aspergillosis often requires long-term or repeated courses of medication, sometimes alongside treatment for co-existing infections or other conditions. Because symptoms of aspergillosis can overlap with medication side effects, new or worsening problems may be assumed to be part of the illness rather than a reaction to treatment.

Why this can be difficult to recognise

People with aspergillosis may:

already experience fatigue, breathlessness, pain, or neurological symptoms
take multiple medicines at the same time
have fluctuating symptoms due to infection, inflammation, or treatment response

This makes it harder to distinguish disease activity from drug-related effects.

The importance of recognising adverse drug reactions

Some medicines commonly used in people with lung disease can, in a small number of individuals, cause serious or long-lasting side effects. These reactions may develop gradually or worsen with continued use.

Examples (not exhaustive) include:

Antibiotics – tendon, nerve, gastrointestinal, cardiac or immune-related effects
Antifungal medicines – liver toxicity, neurological symptoms, skin reactions, drug interactions
Steroids – bone loss, adrenal suppression, mood changes, infection risk
Immunosuppressive or biologic therapies – infection risk, immune dysregulation, inflammatory reactions

Not everyone experiences these effects, and many people take these medicines safely. However, when significant new symptoms appear after starting or changing treatment, they should be actively reassessed.

Why knowledge of medication side effects matters

Patients are not expected to diagnose themselves. However, having a basic awareness of known serious side effects can help patients recognise when something may not be right.

In the UK, trusted sources such as the British National Formulary (BNF) list both common and rare but serious adverse effects for prescribed medicines, and drug:drug interactions which are particularly significant for antifungal medications. Reviewing this information can support informed discussions with healthcare professionals, particularly if symptoms worsen rather than improve.

Checking authoritative sources is not about challenging clinical expertise or stopping treatment independently. It is about ensuring that potential drug reactions are considered alongside disease progression.

A balanced message for patients and clinicians

Safe care depends on partnership. This means:

patients feeling able to report side effects clearly and repeatedly if needed
clinicians remaining alert to drug reactions, especially when symptoms are atypical or progressive
being willing to pause, review, and reconsider treatment when outcomes are not as expected

Early recognition of adverse drug reactions can reduce the risk of long-term or permanent harm.

Take-home message

If treatment is making you feel significantly worse, and the symptoms do not feel right for you, it is reasonable to ask for reassessment — even if the treatment is commonly used or usually well tolerated.

Being informed, listened to, and reviewed promptly helps ensure safer care for people living with aspergillosis.

by GAtherton

Why do some people with aspergillosis lose weight on the hips and thighs, but gain around the waist?

Many people living with aspergillosis, bronchiectasis or ABPA notice their body shape changing as they get older — especially after 60.
A very common pattern is:

Thinner hips and legs
More weight around the waist or tummy

This can feel confusing, but there are clear reasons why it happens.

1. Chronic lung conditions make it harder to keep leg and hip muscle

When you live with a long-term lung condition, you often have:

Breathlessness
Fatigue
Repeated chest infections
Less ability to walk long distances or climb stairs

Because the legs work harder than any other muscles, they are the first to lose strength and size when activity drops.
This is why many people notice:

Slimmer thighs
Smaller hips
Feeling weaker when getting out of a chair

This is partly due to age, but it happens faster in people with chronic lung disease.

2. Steroids can move weight from the limbs to the waist

Many aspergillosis patients have had:

Several courses of prednisolone over the years
High-dose inhaled steroids
Hydrocortisone replacement for adrenal problems

Even short or occasional courses can cause fat redistribution, where:

Fat and muscle reduce in the arms, hips and legs
More fat settles around the stomach area
The centre of the body becomes rounder even if the overall weight hasn’t changed much

This effect can continue long after stopping steroids.

3. Ageing naturally shifts fat towards the waist

After about age 60, the body changes how it stores fat:

Less around the hips and thighs
More around the waist
More “internal” fat around organs (visceral fat)

This happens to everyone, but can be more noticeable in people with aspergillosis because illness already reduces leg muscle.

4. You can lose muscle even if weight on the scales stays the same

Many patients say,
“I feel thinner and thicker at the same time.”

That’s because:

Muscle in the legs may be lost
Fat around the waist may increase
The total body weight doesn’t always change much

This is a normal pattern in long-term lung disease.

5. Illness, flare-ups, infections and poor appetite add to this

During flare-ups or infections, it’s common to:

Eat less
Feel exhausted
Lose muscle faster
Keep or gain tummy fat

The body burns muscle first when unwell, not fat — especially not tummy fat.

Is this dangerous?

Not usually on its own — but it does mean:

Legs may feel weaker
Balance and stamina can reduce
It may be harder to stay active

Strength and gentle exercise (within your limits) can help rebuild some leg muscle.

If weight changes are sudden or unexplained, they should always be discussed with your GP or specialist.

In summary

This body-shape change is very common in people with aspergillosis over 60.
It’s caused by a combination of:

Reduced activity due to breathlessness
Loss of leg and hip muscle
Steroid effects on fat distribution
Natural age-related changes
Appetite changes during illness

It doesn’t mean you’re doing anything wrong — it’s simply a pattern seen in many people with long-term lung disease.

by GAtherton

COVID Vaccines: Yes, There Is Some Risk — But COVID Infection Causes Far More Harm

People living with aspergillosis, CPA, ABPA, bronchiectasis, asthma or sarcoidosis often feel understandably anxious about vaccination.
Concerns about myocarditis, side effects, and frightening stories online are completely normal.

But when you compare the risks of the vaccine with the risks of COVID infection, a clear picture emerges:

⚠️ The vaccine carries some risk

🚨 COVID infection carries far, far more risk — and affects almost everyone

This article explains that difference clearly and honestly.

**1. COVID vaccines can cause harm — but this is rare**

No medical treatment is risk-free.
A very small number of people experience:

Fever
Fatigue
Headache
Swollen glands
Sore arm
Mild myocarditis (usually short-lived, rare, and mostly in young men)

Serious reactions such as hospitalisation or anaphylaxis are extremely rare — roughly 1–2 cases per million doses.

We should acknowledge this openly.

2. Almost everyone has had COVID in the last five years

Across the UK and most of the world, over 90% of adults now show antibodies from a past COVID infection, even if they didn’t realise they had it.

Many infections felt like a cold or passed unnoticed, but the body still experienced real risks:

heart inflammation
blood clots
lung inflammation
long-term fatigue
worsening of existing lung disease

Many people have had COVID more than once, and the risks increase with repeated infections.

So when we compare vaccine risk with infection risk, we’re not discussing a rare scenario — we are talking about something nearly everyone has already experienced, often multiple times.

3. COVID vaccines have prevented millions of hospitalisations and deaths

Global studies estimate that:

In the first year alone, COVID vaccines prevented around 19 million deaths worldwide.
WHO Europe reports more than 1.4 million lives saved in Europe alone.
A wider analysis suggests vaccines prevented over half of all potential hospitalisations and severe outcomes across many countries.

A simple way to think about it:

For every serious vaccine reaction, the vaccine prevents tens of thousands of hospitalisations and deaths.

This benefit is especially important for people with:

chronic lung disease
aspergillosis
bronchiectasis
asthma
immune suppression
long-term steroid use

For these groups, the protective effect of vaccination is greater than average, because COVID complications are more dangerous.

4. COVID infection causes far more harm than the vaccine

This is the crucial point.

COVID infection is 30–100 times more likely to cause myocarditis than the vaccine.

And infection-related myocarditis is:

more severe
more likely to require hospital care
more likely to leave long-term effects

COVID infection also increases the risk of:

blood clots
heart attacks
strokes
lung scarring
long COVID
ICU admission
worsening of asthma, ABPA, CPA and bronchiectasis

And the risk of death from infection is hundreds of times higher than the risk from vaccination.

5. Why scare stories feel louder than scientific facts

Scary individual stories spread quickly online.
But they are rare.

What we don’t see in the same dramatic way:

“Thousands of vulnerable patients avoided severe illness because they were vaccinated.”
“Vaccination prevented hospital admissions this week.”
“Most myocarditis cases after vaccination recover fully within days.”

Positive outcomes never go viral — but they happen constantly.

6. What this means for people with aspergillosis

COVID infection can:

trigger ABPA flares
worsen CPA cavities
increase mucus blockage
increase breathlessness
raise the risk of secondary fungal infections
accelerate lung damage
lead to hospitalisation

Vaccination significantly reduces all of these risks.

For most people with aspergillosis, vaccination is far safer than repeated COVID infections.

7. A supportive message for anyone still unsure

“It's true the vaccine carries some risk — all medicines do.
But COVID infection carries far, far more risk, and nearly everyone has had it at least once already.
Vaccination is the option that best protects your heart, your lungs, and your long-term health.”

by GAtherton

🌡️ Understanding Body Temperature in Aspergillosis: Why Your Fever May Look Different

Many people living with aspergillosis—including allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA), severe asthma with fungal sensitisation (SAFS) and Aspergillus bronchitis—notice that their body temperature behaves differently from what doctors call “normal.”

This is especially common in people who are:

On long-term steroids
Tapering steroids
Living with adrenal insufficiency
Older adults
On biologics
Managing chronic lung disease

This guide explains why your temperature may run lower, why fevers can appear smaller or absent, and how to safely manage this.

🔶 1. Many aspergillosis patients have a lower baseline temperature

Although “37.0°C” is often quoted, most patients actually sit anywhere between 35.5–36.5°C.
Reasons include:

✔ Long-term steroids

Prednisolone, methylprednisolone, hydrocortisone, and even high-dose inhaled steroids can blunt the immune response and lower your resting temperature.

✔ Adrenal insufficiency

If your adrenal glands are suppressed, your body’s ability to raise temperature is reduced.
You may get no fever at all, even with infections.

✔ Chronic lung disease

Living with ABPA, CPA or bronchiectasis can change how your body regulates heat.

✔ Biologic treatments

Some biologics influence inflammatory signalling and may soften fever responses.

✔ Age

Older adults naturally have:

Lower metabolism
Lower baseline temperature
Reduced ability to generate fever (“immune senescence”)

Many older aspergillosis patients sit around 35.7–36.2°C when completely well.

🔶 **2. Fever is a rise from your normal — not a single number**

For someone with a naturally low temperature, a fever may look very different.

A useful rule:

A fever = a rise of 1°C above your personal baseline,
even if the thermometer is below 38°C.

Example

Your baseline = 35.8°C
Your fever may begin at 36.8–37.0°C

You may feel shivery, hot, exhausted or “flu-ish” long before hitting 38°C.

🔶 3. Why fevers are often “muted” in aspergillosis

✔ Steroids

Reduce the body’s ability to trigger a strong fever.

✔ Adrenal insufficiency

Greatly reduces your ability to raise temperature; infections may show as fatigue, dizziness, nausea or sudden weakness instead.

✔ Age

Older adults may have:

No fever
A tiny rise
Confusion or breathlessness as the only sign of infection

✔ Chronic disease

Your temperature regulation system may simply behave differently because of long-term inflammation.

🔶 4. What YOU can do to manage this safely

✔ Know your personal baseline

Measure your temperature twice daily for 5–7 days when well.
Record the average — this is your true normal.

✔ Treat a 1°C rise as your own fever

Don’t wait for the thermometer to reach 38°C.

✔ Watch symptoms more than the number

Seek medical advice if you notice:

Feeling feverish or shivery
Breathing worsening
New chest or flank pain
Sudden exhaustion
Increased heart rate
Confusion, dizziness or “not right”
New cough or change in sputum

These can indicate infection even without a high temperature.

✔ Keep a symptom + temperature chart

Especially if you:

Are on steroids
Have adrenal insufficiency
Are tapering
Are on biologics
Have recurrent infections

Even simple notes help clinicians hugely.

✔ Tell every clinician your temperature baseline

Not all doctors will know your usual pattern, so tell them:

“My normal temperature is around X°C.
I don’t get high fevers because of chronic illness/steroids/adrenal suppression.
A small rise is significant for me.”

This is important in GP appointments, A&E, respiratory clinics and hospital admissions.

🔶 5. Extra precautions if you have adrenal insufficiency

People with steroid-induced adrenal suppression must be especially careful:

A small temperature rise + feeling unwell may mean you need stress-dose steroids
Vomiting, dizziness, intense fatigue or confusion are warning signs
Always follow your adrenal emergency plan
Always carry your Steroid Emergency Card and hydrocortisone emergency injection if prescribed

🔶 6. Do doctors understand this?

Most clinicians understand the general rules:

Older adults often do not mount high fevers
Steroids blunt fever
Adrenal insufficiency changes the febrile response
Infection may present atypically

However, few clinicians know your personal baseline unless you tell them.

Sharing your own numbers helps them interpret your symptoms safely and accurately.

🟩 Summary for Aspergillosis Patients

Many people with aspergillosis have a naturally lower temperature.
Steroids, adrenal insufficiency and age can all reduce your ability to produce a fever.
A rise of 1°C above YOUR normal may be your fever.
Focus on overall symptoms, not just the thermometer.
Tell every clinician your baseline temperature.
Take extra care if you have adrenal insufficiency.

by GAtherton

Side effects from Biologic Medication

It’s completely understandable to feel unsure before starting a biologic — especially when you’ve heard different experiences from different people.
Most patients with ABPA or severe Aspergillus-related asthma do very well on biologics. Side effects can happen, but they’re usually mild and settle quickly.

🌟 Most people report very few problems

Patients often say:

The injections are straightforward
They feel the same or better within days or weeks
There’s little or no impact on daily life

🌟 Common, mild side effects

These are the ones we hear most often across omalizumab, benralizumab, dupilumab and tezepelumab:

📌 Injection-site reactions

Redness
Itching
A small tender lump
Bruising
These usually disappear within 24–48 hours.

📌 Mild tiredness

Some people feel slightly “wiped out” after the first few doses.

📌 Headache

Very common with the first injection. Less so afterwards.

📌 Minor joint or muscle aches

A bit like the feeling after a flu jab.

📌 Nasal or sinus changes

Occasional mild dryness or congestion, especially with dupilumab.

🌟 Less common (still mild)

Mild tummy upset
Sore throat
A brief “flu-ish” feeling
Temporary increase in eczema (mainly with dupilumab)
Slight mood dip for a day or two (rare)

🌟 Rare but important

These are very uncommon, and your team will explain what to look out for:

Allergic reaction shortly after an injection
(This is why your first dose is supervised.)
Eye inflammation — mostly linked to dupilumab, usually mild and treatable

Your team will give you clear advice on what to do if anything unusual happens.

🌟 What ABPA patients often notice

People with ABPA frequently describe:
👉 Fewer allergic symptoms
👉 Clearer breathing
👉 Much less mucus
👉 Fewer flare-ups and fewer steroids

But biologics don’t help everyone — which is why the first few months are monitored closely.

🌟 Final reassurance

For many aspergillosis patients, biologics are far easier than long-term steroids or antifungals. Most say the benefits outweigh the side effects — but every person’s experience is individual.

by GAtherton

**Adrenal Insufficiency & Steroid Tapering:

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.

⭐ 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.

⭐ 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.

⭐ 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).

⭐ 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.

⭐ 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.

⭐ 6. Tests used to monitor adrenal function during tapering

Doctors rely on a combination of symptoms and laboratory tests.

✔ 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.)

✔ 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

✔ 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

✔ Electrolytes (U&Es)

Low cortisol may cause:

Low sodium
High potassium (less common in steroid-induced insufficiency)

✔ Blood pressure monitoring

Low cortisol → low BP, dizziness, faintness.

✔ Glucose levels

Low-normal glucose and shakiness may occur during withdrawal.

✔ 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

⭐ 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):

Higher doses can reduce more quickly.
Taper slows dramatically near physiological levels
(~4–6 mg pred-equivalent).
If symptoms appear → pause, slightly increase, or slow taper.
SST is used near the end to confirm recovery.

⭐ 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

⭐ 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)

⭐ 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.

by GAtherton

🌿 Your Immune System, Biologics, and Steroids: What’s Suppressed — and What Stays Strong

A clear, reassuring guide for people living with ABPA, CPA, asthma, SAFS, or bronchiectasis

Treatments for aspergillosis-related conditions often involve steroids, and more recently, biologics.
Many patients understandably wonder:

What do these medicines suppress?
Do they affect my ability to fight infection?
Why are biologics considered safer than long-term steroids?
Which parts of my immune system stay strong?

This guide explains the full picture in simple terms.

🧬 1. Understanding Your Immune System: The Three Layers

Your immune system has three major lines of defence.

⭐ A. Barriers — the first line

These stop pathogens entering in the first place:

Skin
Mucus in airways
Cilia sweeping mucus out
Tears, saliva, stomach acid
Healthy bacteria (microbiome)

👉 Biologics do NOT affect barriers.
👉 Steroids can weaken skin and airway lining if used long-term.

⭐ B. Innate immunity — fast responders

These act within minutes or hours.

Key cells:

Neutrophils → main killers of Aspergillus
Macrophages → engulf spores
Dendritic cells → show pathogens to T-cells
NK cells → kill virus-infected cells

Sensors:

Dectin-1 → recognises fungal walls
TLRs
Complement proteins

👉 Biologics do NOT weaken these.
👉 Steroids weaken several key functions, especially neutrophils and macrophages.

⭐ C. Adaptive immunity — targeted, long-term defence

Slower but specialised.

T-cells:

Th1 → fight bacteria/viruses
Th17 → major antifungal fighters
Th2 → allergic pathways (IgE, eosinophils)
Tregs → calm inflammation

B-cells & antibodies:

IgG / IgA / IgM → normal infection defence
IgE → allergy and ABPA pathway

👉 Biologics only suppress Th2/IgE pathways.
👉 Steroids suppress many T-cell and B-cell functions, not just allergy.

🎯 2. What Biologics Suppress (Targeted & Selective)

Biologics used in ABPA and difficult asthma (omalizumab, mepolizumab, benralizumab, dupilumab, tezepelumab) only turn down allergic inflammation, not infection-fighting immunity.

🔻 A. They suppress:

IgE
Eosinophils
IL-4 / IL-5 / IL-13
Type-2 allergic inflammation
Mucus hypersecretion (IL-13)
TSLP airway alarm signalling

🛡️ B. They do NOT suppress:

Neutrophils
Macrophages
Th1 immunity
Th17 antifungal pathways
T-cell killing function
Antibiotic/cell-mediated defences
Complement
Dectin-1 fungal recognition

This is why biologics do NOT increase fungal infection risk.

🔥 3. What Oral Steroids Suppress (Broad & Non-Specific)

Oral steroids like prednisolone reduce inflammation everywhere — including places you need for infection defence.

❌ A. They suppress key immune cells

Neutrophils → move slower, kill less effectively
Macrophages → reduced pathogen killing
T-cells → weaker antiviral/antifungal defence
B-cells → reduced antibody production

❌ B. They suppress important cytokines

IL-1, IL-2, IL-6
TNF-α
Interferons
IL-12, IL-23 (Th1/Th17 pathways)

These are essential for fighting viruses, bacteria, and fungi.

❌ C. They weaken antigen presentation

Dendritic cells and macrophages become less effective at “showing” pathogens to T-cells.

❌ D. They weaken barriers

Thinner skin
Thinner airway lining
Slower wound healing

This increases infection risk.

❌ E. They reduce eosinophils and IgE (similar to biologics)

But they do this alongside suppressing many healthy parts of your immune system.

🛡️ 4. What Remains Intact on Each Treatment

✔ On biologics (strongest preserved immunity):

Neutrophil antifungal killing
Macrophage function
Th1 & Th17 immunity
Antibodies (IgG, IgA, IgM)
Complement
Mucus & cilia defences
NK cell antiviral defence
Fever & inflammation responses

⚠️ On steroids (weaker preserved immunity):

Complement
Some antibody production
Basic barrier function (though thinner)

Many infection-fighting cells work less effectively.

🫁 5. Why Biologics Are Safer Long-Term for ABPA/SAFS

Because biologics:

target only a tiny portion of immunity
do not increase fungal growth
do not raise infection risk
reduce inflammation without broad suppression
help avoid long-term steroid complications

Steroids:

increase infection risk
can worsen fungal colonisation
damage lung structure over time
cause weight gain, bone thinning, adrenal issues
must be used short-term only when essential

🌈 6. Summary Table

Immune Feature	Biologics	Steroids
IgE suppression	✔	✔
Eosinophil suppression	✔	✔
Neutrophils	Unaffected	Suppressed
Macrophages	Unaffected	Suppressed
Th1/Th17 antifungal pathways	Unaffected	Suppressed
Viral defence	Unaffected	Suppressed
Barrier integrity	Unaffected	Weakened
Infection risk	No increase	Increased
Long-term safety	High	Low

🌟 7. One-Sentence Takeaway

Biologics turn down the allergic part of immunity (IgE, IL-4, IL-5, IL-13, eosinophils), while steroids suppress many of the infection-fighting parts as well — which is why biologics are much safer long-term.

by GAtherton

Inhaled Steroids and ABPA: Do They Help or Should They Be Avoided?

Many people living with allergic bronchopulmonary aspergillosis (ABPA) also use inhaled steroid inhalers such as Symbicort, Fostair, Seretide or Clenil. It’s common to feel confused about whether these inhalers help, whether they should be continued, or whether they could cause harm.

This guide explains what inhaled steroids do, what they don’t do, and how they fit into the treatment of ABPA, asthma, and bronchiectasis.

1. Understanding the basics

What are inhaled steroids?

Inhaled corticosteroids (ICS) are medications breathed directly into the lungs to reduce airway inflammation, especially in asthma. Combination inhalers (e.g., Symbicort, Fostair) contain a steroid + a long-acting bronchodilator.

**What they don’t do**

Inhaled steroids do not treat ABPA itself.
ABPA is caused by an immune over-reaction to Aspergillus in the lungs. This reaction sits too deep in the airways for inhaled steroids to reach, and the inflammation is too strong for inhaled doses to control.

This is why ABPA flares are treated with:

Oral steroids, or
Biologics, such as mepolizumab, benralizumab, dupilumab or omalizumab.

2. Why inhaled steroids are still useful for many ABPA patients

Although inhaled steroids don’t treat ABPA directly, most people with ABPA also have asthma.
In asthma:

the airways are twitchy
inflamed
narrow easily
and respond well to inhaled steroids

If your symptoms include wheeze, chest tightness, breathlessness that varies from day to day, or a good response to your reliever inhaler, there is a strong chance that asthma is part of your condition.

In those cases, inhaled steroids can be very helpful in keeping the asthma component under control.

3. When inhaled steroids may offer little benefit

Some patients with ABPA have:

minimal asthma
mainly bronchiectasis
or are fully controlled on a biologic

In these situations, inhaled steroids might not provide much additional benefit and occasionally can increase the risk of airway infections, especially in people with significant bronchiectasis.

This is why doctors sometimes sound vague: the answer genuinely depends on your individual mix of ABPA, asthma, and bronchiectasis.

4. How biologics change the picture

Biologics used for ABPA and asthma (e.g., benralizumab, mepolizumab, dupilumab) reduce airway inflammation far more effectively than inhaled steroids. Once a patient is stable on a biologic, many specialists will slowly reduce the inhaled steroid dose if asthma symptoms remain well-controlled.

This does not happen quickly — it is done gradually and only if your breathing tests and symptoms stay stable.

5. Why there is no simple “yes” or “no” answer

Doctors often hesitate to give a straight answer because inhaled steroids can be:

Essential for asthma
Optional for mild asthma
Less useful if ABPA is the main issue
Potentially overused in some bronchiectasis patients
Safely reduced in people doing well on biologics

Your treatment has to sit in the right place on that spectrum.

6. Questions that can help you get a clear answer from your own team

Many patients say they receive vague responses. These direct questions can help:

✔ “Am I using this inhaler for my asthma, or for my ABPA?”

(If it’s for ABPA, that usually signals a misunderstanding.)

✔ “Do you think my asthma is active, and is the dose of inhaled steroid still appropriate?”

This invites your clinician to be specific.

✔ “If I stay stable on my biologic, could we review the inhaled steroid dose in the future?”

This aligns with typical specialist practice.

7. The bottom line

Inhaled steroids do not treat ABPA itself.
They are helpful if you also have asthma — which many ABPA patients do.
They may be less useful if asthma is mild or absent, especially in pure bronchiectasis.
When patients stabilise on biologics, inhaled steroid doses are often reviewed and sometimes reduced.
The best approach is individual: the right treatment mix varies from patient to patient.

If you’re unsure what role your inhaler is playing, it’s absolutely reasonable to ask your specialist to explain exactly why you’re on it and whether the dose is still right for you.

by GAtherton

Understanding Risk: How Common Is “Rare”?

When doctors talk about risk, it can sound worrying — especially when you’re already living with a lung condition.
But every day, we all take small, managed risks without realising it.

Understanding how everyday risks compare with medical or vaccine risks helps put the numbers into perspective — and shows why treatment is almost always worth it.

🚶‍♀️ Everyday activities carry small risks

Everyday life is full of tiny risks we accept because the benefits are clear — exercise, travel, independence, and social connection.

Activity	Estimated risk of serious harm	Equivalent comparison
Driving a car for 250 miles	About 1 in 1 million chance of fatal accident	Roughly the same as the risk of a severe vaccine reaction
Cycling for 30 minutes	About 1 in 3 million	Similar to being struck by lightning in your lifetime
Walking near traffic for a day	Around 1 in 15 million	Negligible, but not zero
Taking a domestic flight (UK)	Less than 1 in 10 million chance of fatal accident	Far safer than most road journeys
Catching flu during winter	Around 1 in 10 chance of getting ill	Much higher risk than most medicine side effects

We don’t think of these activities as “dangerous” because the benefit far outweighs the risk — just as it does with most treatments.

💊 Medicines and vaccines we take safely every day

Most common medicines have mild, short-lived side effects. Serious reactions are possible but extremely rare.

Medicine	Typical mild effects	Serious reactions (approx. frequency)	Comment
Paracetamol (acetaminophen)	Nausea, rash	Serious liver injury ≈ 1 in 100,000 (usually after overdose)	Very safe when taken correctly
Ibuprofen	Heartburn, upset stomach	Ulcer or stomach bleed ≈ 1 in 1,000 if used long term	Safer when taken with food
Amoxicillin	Diarrhoea, mild rash	Severe allergic reaction ≈ 1 in 5,000–10,000	Rare but recognised
Influenza vaccine	Sore arm, tiredness	Severe allergic reaction ≈ 1 in 1 million	Prevents thousands of serious infections yearly
COVID-19 vaccine	Mild flu-like symptoms (≈ 1 in 10)	Severe allergic reaction ≈ 1 in 100,000	Benefits far outweigh risks
Oral steroids (short course)	Increased appetite, insomnia	Major side effects only with prolonged use	Vital during ABPA or asthma flares

⚕️ What does “serious side effect” really mean?

When you read about serious reactions in medical leaflets or vaccine information, it doesn’t necessarily mean life-changing.
The term “serious” has a specific medical meaning, used by the MHRA, EMA, and WHO.

A reaction is called serious if it:

leads to hospitalisation,
is life-threatening at the time,
causes temporary disability or incapacity,
results in death, or
causes a birth defect.

👉 It’s about medical urgency, not always long-term harm.

In reality, most serious reactions are short-lived and fully reversible with prompt treatment.
For example:

An anaphylactic reaction to a vaccine is medically serious because it needs immediate care — but nearly everyone recovers completely once treated.
A high fever or rash that requires a day in hospital may be serious in reporting terms, but causes no permanent damage.

By contrast, life-changing reactions (such as nerve injury or organ failure) are extraordinarily rare — far rarer than being struck by lightning.

“When doctors say ‘serious reaction’, they mean something that needs urgent medical attention — not something that will leave you permanently unwell.”

🩺 More common health risks we all face

While medicine risks are very small, the everyday risks to life and health are much higher — especially if conditions go untreated.

Health event or cause	Approximate annual risk (UK adult)	Lifetime risk	Notes
Heart attack	Around 1 in 200–300 per year	1 in 4 men, 1 in 6 women	Increases with age, smoking, and high blood pressure
Stroke	Around 1 in 250 per year	About 1 in 5 adults	Preventable with healthy lifestyle and medication
Cancer (any type)	Around 1 in 125 per year	Around 1 in 2 people in their lifetime	Most treatable when found early
Serious road accident	About 1 in 15,000 per year	Around 1 in 100 lifetime	Far higher than a vaccine reaction
Severe flu needing hospital care	Around 1 in 500 per winter	Higher for people with lung disease	Preventable by flu vaccination
Fatal asthma attack	About 1 in 100,000 per year	Higher in uncontrolled asthma	Preventable with good management
COVID-19 death (current UK levels)	Around 1 in 2,000–5,000 per year for older/vulnerable adults	Major reason vaccination still matters
Lightning strike	About 1 in 15 million per year	Around 1 in 300,000 lifetime	Benchmark for “extremely rare” risk

⚖️ Making sense of the numbers

A 1 in 1,000 risk means one person in a large GP practice might experience it.
A 1 in 100,000 risk means one person in a football stadium crowd.
A 1 in 1 million risk is so rare that most doctors never see it in their career.

So when you hear that a serious vaccine reaction occurs in one in a million people, that’s about the same as:

being struck by lightning once in your life, or
winning a small lottery prize several times in a row.

❤️ The real takeaway

The greatest risks to life and health are the common diseases we can prevent or treat — not the rare side effects of treatment.

Every vaccine or medicine is carefully assessed so that its benefits far outweigh its risks, especially for people with asthma, ABPA, bronchiectasis, or weakened immunity.
Treatments don’t add danger — they reduce the much bigger risks from infection, inflammation, and lung damage.

🧭 Key message

We all live with risk, but:

Most everyday and health-related risks are far greater than the tiny chance of a medicine reaction.
Managing your lung condition well — with the right treatment, vaccines, and follow-up — protects your lungs and lengthens your life.
The safest path is always informed care, not avoidance through fear.

by GAtherton

Why adrenal insufficiency can happen in people with aspergillosis

A patient guide to everyday (basal) dosing, higher-dose needs, and short-term stress dosing

Very important first point ❗

1) Your basal (everyday) hydrocortisone dose

What the basal dose is for

A key point many patients are not told

What doctors usually mean by a “physiological” dose

How basal hydrocortisone is usually taken

Signs your basal dose may be too low

Blood tests are only part of the picture

The right balance

2) When a higher basal dose may be appropriate

Well-recognised examples include:

Important reassurance

3) Stress dosing — when your body temporarily needs more

What stress dosing means

Stress dosing is essential — but it is short term

What “short term” usually means

Why stress dosing should not continue indefinitely

Stepping back down safely

Stress dosing does NOT:

Not stress dosing can:

4) Why some doctors seem hesitant

5) How to advocate safely (with medical backing)

6) Trusted resources & further support (with links)

UK patient and professional resources

International patient resources (useful supplements)

Resources especially relevant for ABPA & chronic lung disease

Quick-access patient checklist (phone / wallet)

Final reassurance

Why this can be difficult to recognise

The importance of recognising adverse drug reactions

Why knowledge of medication side effects matters

A balanced message for patients and clinicians

Take-home message

1. Chronic lung conditions make it harder to keep leg and hip muscle

2. Steroids can move weight from the limbs to the waist

3. Ageing naturally shifts fat towards the waist

4. You can lose muscle even if weight on the scales stays the same

5. Illness, flare-ups, infections and poor appetite add to this

Is this dangerous?

In summary

⚠️ The vaccine carries some risk

🚨 COVID infection carries far, far more risk — and affects almost everyone

1. COVID vaccines can cause harm — but this is rare

2. Almost everyone has had COVID in the last five years

3. COVID vaccines have prevented millions of hospitalisations and deaths

For every serious vaccine reaction, the vaccine prevents tens of thousands of hospitalisations and deaths.

4. COVID infection causes far more harm than the vaccine

COVID infection is 30–100 times more likely to cause myocarditis than the vaccine.

5. Why scare stories feel louder than scientific facts

6. What this means for people with aspergillosis

7. A supportive message for anyone still unsure

🔶 1. Many aspergillosis patients have a lower baseline temperature

✔ Long-term steroids

✔ Adrenal insufficiency

✔ Chronic lung disease

✔ Biologic treatments

✔ Age

🔶 2. Fever is a rise from your normal — not a single number

Example

🔶 3. Why fevers are often “muted” in aspergillosis

✔ Steroids

✔ Adrenal insufficiency

✔ Age

✔ Chronic disease

🔶 4. What YOU can do to manage this safely

✔ Know your personal baseline

✔ Treat a 1°C rise as your own fever

✔ Watch symptoms more than the number

✔ Keep a symptom + temperature chart

✔ Tell every clinician your temperature baseline

🔶 5. Extra precautions if you have adrenal insufficiency

🔶 6. Do doctors understand this?

🟩 Summary for Aspergillosis Patients

🌟 Most people report very few problems

🌟 Common, mild side effects

📌 Injection-site reactions

📌 Mild tiredness

📌 Headache

**1. COVID vaccines can cause harm — but this is rare**

🔶 **2. Fever is a rise from your normal — not a single number**

**What they don’t do**