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

What to do if you think you’ve been given the wrong dose of a medication

Advice for people living with aspergillosis

Most of the time, prescriptions are correct and safe. However, people with aspergillosis often have complex medical needs, and it is not unusual for treatment to differ from standard “one-size-fits-all” dosing. This means that occasionally, a prescription may not match what you usually receive or what your specialist has recommended.

If something doesn’t look right, it is reasonable — and responsible — to pause and check.

Why this can happen

Prescribing in GP surgeries and hospitals is usually done using electronic systems with preset doses and durations. These defaults are designed for the average patient and for common infections.

People with aspergillosis may:

need longer or higher-dose treatment
be taking interacting medicines (for example antifungals or steroids)
have been advised by a specialist to follow a non-standard plan

If this information is not clearly visible at the time of prescribing, the prescriber may reasonably select a default option that is not quite right for you. This is a system issue, not a personal failure.

Signs that a prescription may need checking

You might want to query a prescription if:

the dose or duration is different from what you usually receive
it does not match what your specialist discussed
it seems very short for a significant infection
the pharmacist queries it
you feel significantly worse after starting it

You do not need to know what the “correct” dose should be to ask for a review.

What to do — step by step

1. Do not ignore your concern
If something feels wrong, it is appropriate to pause and ask for clarification.

2. Speak to the pharmacist
Pharmacists are trained to spot dosing and duration issues. Ask:

“Does this look right for someone with my condition?”
“Could you check this against my previous prescriptions or clinic letters?”

Pharmacists can often contact the prescriber directly.

3. Contact the prescriber for a check
You can say:

“I have a long-term lung condition and usually need non-standard dosing.”
“Could this be checked against my specialist advice?”

This is a safety check, not a complaint.

4. Use trusted information sources
In the UK, the British National Formulary (BNF) lists usual doses and important side effects. You are not expected to interpret this alone, but it can help you explain your concern clearly.

5. If you are unsure, do not start or continue without advice
If you are worried about dose, duration, or side effects, seek medical advice urgently rather than continuing in uncertainty.

Why this matters for aspergillosis patients

In people with chronic lung disease:

under-dosing can lead to treatment failure or relapse
short courses may increase the risk of resistance
symptoms may worsen and be misinterpreted as disease progression

From an antimicrobial stewardship (AMS) perspective, the right dose and duration are just as important as avoiding unnecessary antibiotics.

This is about partnership, not blame

Most prescribing issues happen because:

systems default to standard settings
clinicians work under extreme time pressure
complex information is not always easy to see

Good care depends on patients, prescribers and pharmacists working together.

If safety depends on the patient spotting an error, the system needs improving — not the patient.

Key take-home message

If a prescription doesn’t look right for you, it is reasonable to ask for it to be checked.

Asking for clarification protects you and supports safer care for everyone.

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

Depemokimab – a new long-acting treatment for severe asthma: what aspergillosis patients need to know

A new medicine called depemokimab is being reviewed by European and UK regulators as a possible treatment for severe eosinophilic (type-2) asthma. Many people with aspergillosis-related conditions – especially allergic bronchopulmonary aspergillosis (ABPA) and severe asthma with fungal sensitisation (SAFS) – also have this type of inflammation, so new options are always important.

⭐ What is depemokimab?

Depemokimab is a biologic treatment, similar to medicines like mepolizumab or benralizumab, but designed to last much longer in the body. It blocks interleukin-5 (IL-5), one of the key signals that drives eosinophils – a type of white blood cell involved in allergy, asthma and ABPA flares.

⭐ What makes it different?

The most important difference is how rarely it needs to be taken.

Current biologics for type-2 asthma are given every 4, 6 or 8 weeks.
Depemokimab is designed to be taken twice a year – only once every six months.

For many people, this could mean:

Fewer injections
More steady asthma control
Less disruption to daily life
A treatment that’s easier to stick with over time

In clinical trials, depemokimab also helped to:

Reduce asthma attacks
Lower the need for oral steroids
Improve symptoms in people with chronic sinusitis and nasal polyps, which commonly affects ABPA and SAFS patients

⭐ Is this a treatment for ABPA or CPA?

Not specifically.
Depemokimab is not a treatment for the Aspergillus fungus itself and it does not replace antifungal medicines.

However, for people whose asthma drives their ABPA symptoms, better asthma control can mean:

fewer flare-ups
better breathing
less need for steroids
reduced pressure on already damaged airways

So while it is not an antifungal, it may become another option in the toolkit for managing asthma linked to aspergillosis.

⭐ When might this be available in the UK?

Depemokimab is currently under review by European regulators.
In the UK, the NICE appraisal for NHS use is underway, with a decision expected in March 2026.

If approved, it could become available on the NHS sometime in 2026.

⭐ What should patients do now?

At this stage:

There is no action needed from patients.
Your asthma or ABPA team will be the first to know when new biologics are approved.
If you already receive a biologic (e.g., mepolizumab, benralizumab, omalizumab, dupilumab), there is no change to your treatment plan.
If you struggle with frequent injections or poor asthma control, your clinician may consider depemokimab in the future once approved.

by GAtherton

Why do some people cough up long, tube-shaped pieces of mucus?

In several chronic lung conditions, the airways can become inflamed and produce thick mucus.
When this mucus sits in the bronchial tubes, it can sometimes harden into a cast shaped exactly like the airway.

People often describe these casts as:

long, ribbon-like or “snakeskin” pieces
rubbery or stretchy
white, yellow, or green
shaped like the inside of a tube

Coughing one up can feel dramatic but is usually a sign that your lungs are finally able to clear a blockage.

**What does it mean if a cast has black flecks or dark spots?**

This can look alarming, but several common, mostly harmless explanations exist.

1. Old or dried blood

Tiny amounts of bleeding from irritated airways can dry and turn:

red → brown → black

This often appears as tiny black dots or threads.

2. Inhaled particles

Dust, soot, pollution, or smoke can get trapped in mucus deeper in the lungs and show up as dark specks.

3. Debris from infection or inflammation

Long-standing inflammation can cause:

darkened mucus fragments
tiny bits of fungal, bacterial or biofilm material
oxidised (darkened) mucus layers

These often look like pepper-like flecks and are not dangerous on their own.

4. Oxidation or ageing of thick mucus

When mucus sits for a long time before it is coughed out, it can become darker in spots.

**When this is usually not worrying**

Black flecks are often harmless when:

the amount is small
the colour change is occasional
you feel better after coughing the cast out
there is no new increase in blood, fever, or breathlessness
this fits your usual pattern of mucus plugging

Most people with chronic airway disease experience occasional colour changes in mucus.

When to mention it to your doctor

You should let your team know if:

black flecks keep appearing repeatedly
you cough up more blood than usual
your breathing worsens suddenly
your sputum smells different
you have fever or chest pain
casts become bigger, more frequent, or harder to clear

These changes do not always mean something serious, but they are worth checking.

Why do casts form in the first place?

Conditions that can cause airway casts include:

Bronchiectasis
ABPA (Allergic Bronchopulmonary Aspergillosis)
Severe or eosinophilic asthma
Chronic infections, including fungal or bacterial
COPD with mucus hypersecretion

Inflammation makes mucus thicker, and narrowed airways make it harder to clear.
Over time, mucus can mould itself into the shape of the airway — becoming a cast.

What to do if you cough one up

Stay calm — this often brings relief.
Take note of its colour and size.
Hydrate well to thin mucus.
Continue your usual airway-clearance technique (physio, nebulisers, saline, etc.)
Let your team know if it is unusual for you.

Final reassurance

Coughing up a long, tube-like piece of mucus can feel shocking, but in most cases it simply means your lungs are clearing a blocked area.
Black flecks are usually:

old blood
trapped dust or soot
dried mucus debris

Most of the time, these findings are not dangerous, but they can give useful clues about airway inflammation.

by GAtherton

Why can Pseudomonas become resistant even when you haven’t taken antibiotics for years?

For people with aspergillosis, asthma, and bronchiectasis, it’s very common to live with long-term Pseudomonas in the lungs.
Hearing that it has become resistant to ciprofloxacin feels frightening, but this does not mean you’ve done anything wrong — or that you’re running out of options.

Here’s why resistance happens:

1. Bronchiectasis airways allow bacteria to settle long-term

The widened, inflamed airways seen in ABPA and bronchiectasis create places where mucus pools and bacteria survive for months or years.

2. Pseudomonas forms “biofilms”

These are sticky layers that protect the bacteria from antibiotics.
Inside them, Pseudomonas can:

swap resistance genes
slowly mutate
become harder to kill

This can happen even without taking antibiotics recently.

3. Your sputum contains a mixture of different strains

Some strains may have been slightly resistant for years.
One strain can suddenly become dominant — and that’s what shows up on the lab test.

So developing resistance is normal in chronic lung disease and not a sign your lungs have suddenly worsened.

Does ciprofloxacin resistance mean IV antibiotics are the only option now?

No — not automatically.
Your team will look at the full sensitivity report to see what is still effective.

Possible options include:

1. Nebulised antibiotics

These are widely used in people with ABPA + bronchiectasis because they act directly in the lungs with fewer body-wide effects.
Common inhaled antibiotics:

Colistin
Tobramycin
Aztreonam

These often have very little impact on the gut microbiome.

2. Other oral antibiotics (if sensitive)

Sometimes alternatives still work, depending on the report.

3. A “suppression” plan

Some patients use inhaled antibiotics on a regular cycle to keep symptoms down and reduce flare-ups.

IV antibiotics are only needed if:

symptoms become severe
there are no suitable oral or inhaled options
your team wants a stronger “clean-out” of the lungs

Even then, it does not mean hospital admission — many patients receive IVs at home.

If IV treatment is recommended

It’s completely normal to feel nervous — especially if you’ve never had IV therapy before.

But here is the part most people find reassuring:

1. The treatment is closely monitored

Blood tests, kidney checks, and hearing tests are routine.
Your team will adjust the dose if needed.

2. Many people feel significantly better afterwards

Patients often say their lungs feel “lighter,” with:

less sputum
easier breathing
fewer flare-ups
more energy

3. Home IV therapy is common

Specialist nurses can support you, and it’s usually temporary.

What about the microbiome?

This is a valid concern, especially for people with long-term lung conditions.

Good news:

Nebulised antibiotics hardly affect the gut microbiome at all.
IV antibiotics mainly affect it short-term, and most people return to baseline once treatment stops.
Your team can help you protect your gut during treatment.

What should you do next?

Here’s a simple plan:

Ask for the full sensitivity report.
There may be several antibiotics still effective.
Discuss inhaled options.
Many ABPA/bronchiectasis patients manage very well with nebulised therapy.
Ask whether this resistance result needs repeating.
Sometimes it reflects one resistant pocket within the biofilm rather than the whole population.
Talk through what an IV plan would look like
— including home options and support.

Final reassurance

Ciprofloxacin resistance is extremely common in people with aspergillosis, ABPA, and bronchiectasis.
It does not mean:

your disease is progressing
you caused the resistance
you are running out of treatment
IV is your only option

It simply reflects how clever Pseudomonas is — and how complex airways behave in chronic aspergillosis.

Your team will still have a range of effective treatments.

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

Physiotherapy and Aspergillosis: Why It Matters

Physiotherapy is an important part of care for many people with aspergillosis, including allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA), aspergillus bronchitis, and severe asthma with fungal sensitisation (SAFS).
It doesn’t diagnose the disease on its own, but physiotherapists play a key role in detecting symptoms, collecting good sputum samples, and helping patients stay stable.

1. How Physiotherapy Helps With Diagnosis

🔍 A. Spotting patterns of sputum, breathlessness, and airway clearance problems

Respiratory physiotherapists often notice:

Thick, sticky mucus that is difficult to clear
Recurrent phlegm plugs
Wheeze, crackles, or airflow changes
Reduced ability to clear secretions after infection
These patterns can be early clues pointing toward ABPA, aspergillus bronchitis, or bronchiectasis linked to Aspergillus.

🔍 B. Supporting high-quality sputum collection

A good sputum sample is essential for:

Fungal culture
PCR
Galactomannan tests
Antibiotic/antifungal susceptibility testing

Techniques like huff coughing, breathing control, postural drainage, or using devices such as Acapella or Aerobika help ensure the sample comes from deep in the lungs, not just saliva.

🔍 C. Identifying airway collapsibility or dysfunctional breathing

Physiotherapists can pick up:

Tracheobronchomalacia
Inducible laryngeal obstruction
Breathing pattern disorder
These are often overlooked and can mimic or worsen aspergillosis symptoms.

If a physio notices these features, they feed findings back to the medical team, supporting a faster, more accurate diagnosis.

2. How Physiotherapy Helps With Treatment

🫁 A. Airway clearance

One of the biggest challenges in aspergillosis—especially ABPA, CPA, and bronchiectasis—is mucus.
Physiotherapy helps patients learn techniques to keep the lungs clear:

Active Cycle of Breathing Techniques (ACBT)
Huffing
Directed huff / forced expiration technique
Gravity-assisted drainage
Oscillating PEP devices (Acapella/Aerobika)
Autogenic drainage
Saline nebulisers to thin mucus

Keeping the airways clear:

Reduces cough and breathlessness
Helps antifungal treatment reach affected areas
Lowers risk of infection and flare-ups
Improves quality of life

💨 B. Managing breathlessness and fatigue

Physiotherapists teach:

Breathing control
Pacing techniques
Positions of ease
Diaphragmatic breathing
Inspiratory muscle training (if appropriate)

This is especially valuable for patients with:

ABPA flare-ups
CPA with reduced lung capacity
COPD or asthma overlap
Deconditioning after illness

🏃 C. Exercise, strength, and rehabilitation

Long-term aspergillosis can reduce fitness due to:

Repeated infections
Inflammation
Steroid side-effects
Time spent resting

Physios provide personalised rehab plans to rebuild:

Strength
Endurance
Balance
Activity levels
Confidence

🧠 D. Managing the “vicious cycle” of breathlessness and anxiety

Breathlessness naturally triggers anxiety, which then worsens breathlessness.
Physiotherapists help break this cycle through:

Breathing retraining
Relaxation strategies
Education on pacing and control

This also reduces the number of A&E visits for “flare-ups” that are actually driven by breathlessness-anxiety spirals.

3. Supporting Long-Term Stability

Regular physiotherapy follow-up helps patients:

Spot flare-ups early
Adjust airway clearance routines
Stay active despite chronic illness
Prevent hospital admissions
Maintain independence

For many patients with aspergillosis, physio becomes a key part of long-term disease management, just like antifungals, inhalers, and specialist review.

4. When Should Patients See a Physiotherapist?

Physiotherapy is particularly helpful if you have:

ABPA with repeated mucus plugging
CPA with sputum, breathlessness, or reduced activity
Bronchiectasis
Frequent chest infections
Difficulty producing sputum for testing
Breathing pattern disorder
Muscle weakness from steroids or long illness
Unexplained breathlessness
Tracheal or airway collapsibility

Summary

Physiotherapy is not just an “add-on” to aspergillosis care—it is a core part of both diagnosis and treatment.
Physiotherapists help:

Identify airway issues
Support accurate testing
Improve breathing control
Clear mucus
Build strength and stamina
Stabilise long-term disease

This combination leads to better outcomes, fewer infections, and a better quality of life.

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

Fungal Vaccines: What New Research Could Mean for Aspergillosis Patients

Based on the 2025 Journal of Clinical Investigation commentary on emerging fungal vaccine science

jci-135-199451

Why fungal vaccines matter

Fungal infections remain a major global health problem, causing an estimated 3.8 million deaths per year. Yet despite this huge burden, there are currently no licensed vaccines to prevent or treat fungal disease.

For people living with aspergillosis—including chronic pulmonary aspergillosis (CPA), allergic bronchopulmonary aspergillosis (ABPA), severe asthma with fungal sensitisation (SAFS), and Aspergillus bronchitis—this gap is very real.
Treatments often involve long-term antifungal medications, steroids, or biologics, and symptoms may recur despite therapy.

A new scientific commentary in the Journal of Clinical Investigation highlights major progress in fungal vaccine research and suggests that vaccines may become important tools for both prevention and treatment in the future.

A new breakthrough: the Eng2 fungal antigen

Researchers studying serious fungal infections in North and South America have identified an enzyme called endoglucanase-2 (Eng2) that triggers a strong immune response:

It protected mice from Blastomyces, Histoplasma, and Coccidioides infections.
People recovering from these infections show memory CD4 T-cell responses to Eng2.

This suggests two important possibilities:

**1. A preventive vaccine**

A future vaccine could reduce the risk of developing serious fungal infections—especially in people with weakened immune systems or chronic lung disease.

**2. A therapeutic vaccine**

Unlike most vaccines, a therapeutic vaccine would be given after infection to support the immune system and help clearance—similar to how post-exposure rabies or hepatitis A vaccines work.

This second application is particularly relevant to aspergillosis.

Why fungal vaccines may be especially useful in Aspergillus disease

Although the study did not focus on Aspergillus specifically, the commentary highlights several reasons why Aspergillus vaccines are scientifically realistic.

1. Fungi are surprisingly easy to vaccinate against in animal studies

Many fungal antigens have already shown strong protective effects in experimental models.

Unlike viruses such as HIV or tuberculosis—where vaccines are extremely difficult—fungal pathogens often respond well to:

Antibody-based immunity
T-cell immunity

Both would be valuable in Aspergillus-related disease.

2. Aspergillosis mainly affects people with weakened or inflamed lungs

This makes it exactly the kind of disease where a vaccine could:

Reduce fungal burden in the airways
Decrease inflammation
Support existing treatments
Reduce flare-ups and symptoms

3. A therapeutic vaccine may arrive before a preventive vaccine

Chronic fungal diseases (especially CPA and Aspergillus bronchitis) develop slowly and persist for months or years.
This gives time for a vaccine to stimulate the immune system during ongoing treatment.

A therapeutic vaccine could:

Enhance the effect of antifungal drugs
Reduce the amount of fungus growing in cavities or bronchiectatic airways
Lower inflammation and antibody levels
Potentially reduce the need for long-term steroids or biologics in ABPA

4. A combination (“multivalent”) vaccine is possible

The Eng2 research shows that one antigen may not protect against all fungal species.
However, a “cocktail” vaccine—using several fungal proteins—could cover multiple fungi, including Aspergillus.

What this could mean for different aspergillosis conditions

For CPA (Chronic Pulmonary Aspergillosis)

A therapeutic vaccine might help:

Reduce fungal load in cavities
Improve long-term control
Support patients who can’t tolerate antifungals
Reduce reliance on prolonged azole therapy

For ABPA (Allergic Bronchopulmonary Aspergillosis)

ABPA is an allergic reaction rather than a true infection.
But reducing the amount of Aspergillus in the airways could:

Decrease IgE levels
Reduce flare frequency
Lower the need for steroids
Improve asthma control

For SAFS and Aspergillus bronchitis

A vaccine could potentially:

Reduce airway colonisation
Improve symptom control
Reduce the cycle of infection → inflammation → airway damage

What this means for patients today

It is important to be clear:

There is no Aspergillus vaccine available yet.

However, the science is moving faster than ever.
The commentary highlights:

Multiple experimental vaccines have already worked in animals
Some fungal vaccines have reached early human trials
mRNA technology (used for COVID vaccines) could accelerate development
High-risk groups—including people with chronic lung disease—would be early candidates

For the aspergillosis community, this research is a major step forward, offering hope for safer and more effective long-term management.

For clinicians: why this matters now

Non-specialist clinicians may want to be aware that:

Vaccine-based immunotherapy may become part of fungal disease management
Therapeutic vaccines could work alongside antifungals, rather than replacing them
Advances in antigen identification (e.g., Eng2) create realistic pathways for Aspergillus-specific research
Patient groups with chronic fungal or allergic disease may benefit significantly from immunological boosting

As fungal disease continues to rise worldwide, vaccination represents a promising future tool in managing both invasive and chronic fungal illnesses.

Looking ahead

While fungal vaccines are “so needed, so feasible, and yet still far off,” the momentum is building.
For people living with aspergillosis—often for many years—the possibility of vaccines offers genuine hope for:

Better control
Improved quality of life
Reduced treatment burden
Less risk of long-term complications

This new research marks an important step on that journey.

by GAtherton