GAtherton, Author at Aspergillosis Patients & Carers Support

Illustration of a patient health record connecting GP, hospital and specialist healthcare services.

Will the NHS Finally Have One Patient Record? What Patients Need to Know

Updated October 2026

Have you ever attended a hospital appointment only to discover that the doctor cannot see your latest test results, medication changes or letters from another hospital?

For people living with long-term conditions such as aspergillosis, this can be especially frustrating. You may receive care from your GP, local hospital, specialist centre and community services, but each organisation may hold different parts of your medical history.

The NHS in England is working towards better-connected health records. Its long-term ambition is a Single Patient Record that helps healthcare professionals and patients access important information more easily.

But how close are we, and what does this mean for patients today?

Why are NHS medical records still separate?

Different NHS organisations have developed their own electronic record systems over many years. GP practices, hospitals, community services, mental health teams and social care providers may therefore record information in different places.

These systems can share some information, but they do not always communicate fully with one another.

This can mean:

Patients having to explain their medical history repeatedly.
Clinicians not immediately seeing recent test results or medication changes.
Hospital letters taking time to reach other services.
Tests occasionally being repeated because previous results are unavailable.
Patients having to help coordinate information between different specialists.

For someone receiving long-term antifungal treatment, incomplete medication information can be particularly important because some antifungal medicines interact with other prescribed drugs.

What information can NHS staff already share?

1. Summary Care Record

In England, the Summary Care Record (SCR) provides authorised healthcare professionals with important information drawn from GP records.

This includes current medications, allergies and previous adverse reactions to medicines. Additional medical information may also be available.

It is particularly useful when someone needs care outside their usual GP practice, including urgent or emergency treatment.

However, the Summary Care Record is not a complete medical record. For example, it may not contain every medication prescribed by a hospital specialist or every investigation performed elsewhere.

2. Regional Shared Care Records

Many parts of England now use regional Shared Care Records, which bring together selected information from different health and care organisations.

Depending on the local system, healthcare professionals may be able to see:

Current medications and allergies.
Diagnoses and significant medical history.
Recent blood tests and other investigation results.
Hospital admissions and discharge information.
Care plans and relevant community or social care information.

These records are developed locally, so the information available varies between regions and organisations. Some systems can share information across neighbouring areas, while others remain more limited.

Important: Having a Shared Care Record does not mean that every NHS professional can automatically see every part of your medical history.

3. Hospital electronic patient records

Many hospitals use comprehensive electronic patient record systems, including systems such as Epic.

These can make information easier to share within a hospital organisation and, where suitable arrangements exist, with other healthcare providers.

However, using the same software does not automatically guarantee that two hospitals can access one another's records. Technical connections, organisational agreements, permissions and information governance arrangements are also necessary.

What is the NHS Single Patient Record?

The NHS in England is developing a Single Patient Record (SPR) as part of its long-term plans to improve healthcare.

The intention is to bring relevant information from different healthcare organisations together so that patients and authorised professionals can access it more easily.

This does not necessarily mean replacing every existing hospital and GP computer system with one enormous database. The central aim is to make information held in different systems available in a more connected and consistent way.

If implemented successfully, it could help healthcare professionals make better-informed decisions, reduce unnecessary duplication and improve coordination between services.

When will the Single Patient Record be available?

Under the government's 10 Year Health Plan for England, the ambition is for people to begin accessing Single Patient Record information through the NHS App from 2028.

That is a planned starting point, not a promise that every patient's complete medical history will be available nationally in 2028.

Implementation will take time. The information available will depend on how different NHS systems are connected, the progress of national and local programmes, and the safeguards needed to protect patient information.

There is therefore no reliable date on which every NHS organisation can be expected to have immediate access to every patient's complete record.

Will patients be able to see their own records?

Patients can already use the NHS App for a growing range of services, including viewing certain GP health record information, prescriptions, appointments and test results where available.

What you can see depends on the services you use and how information is made available.

The Single Patient Record is intended to extend this access over time, helping people see more of their information in one place.

Better patient access could make it easier to check medication lists, understand treatment decisions and prepare for appointments.

Will my information be kept secure?

Medical records contain sensitive personal information. Any system that connects records must protect confidentiality and ensure that information is only accessed for legitimate purposes.

Existing Shared Care Records use access controls, information governance arrangements and audit mechanisms. Healthcare staff should only access information relevant to their responsibilities.

The proposed Single Patient Record will also require appropriate privacy and security safeguards.

Patients should be given clear information about how their data is used, who can access it and what choices or rights they have.

What does this mean for people with aspergillosis?

People with chronic pulmonary aspergillosis, allergic bronchopulmonary aspergillosis (ABPA) and other complex respiratory conditions may receive care from several different services.

For example, a patient may have:

A GP who manages routine prescriptions.
A local respiratory consultant.
A specialist aspergillosis service providing treatment advice.
Hospital pharmacy teams monitoring antifungal interactions.
Community nurses, physiotherapists or other professionals providing support.

Better-connected records could help these professionals work together more effectively.

It may become easier to share antifungal treatment plans, monitoring results, CT scan reports and information about adverse drug reactions.

However, until these systems are reliably connected, patients may still need to help ensure that important information reaches everyone involved in their care.

What can patients do now?

While the NHS works towards more connected records, there are practical steps you can take to reduce the risk of missing information.

Keep an up-to-date medication list. Include prescribed medicines, inhalers, antifungal treatments and any relevant non-prescription products.
Record allergies and serious adverse reactions. Make sure healthcare professionals know about them.
Keep important clinic letters. These can be useful when attending a different hospital or specialist.
Use the NHS App where available. Check what information you can access and whether anything important appears incorrect.
Ask whether your records are shared. Your GP or hospital may be able to explain which regional systems they use.
Check that medication changes are communicated. This is particularly important when hospital specialists prescribe medicines that interact with other treatments.
Keep a short health summary. A brief record of your diagnoses, current treatments and specialist contacts can be valuable in an emergency.

Will patients eventually stop repeating their medical history?

That is one of the important ambitions behind better-connected NHS records.

But even with improved technology, clinicians will still need to ask questions, confirm details and listen to patients. Medical records can be incomplete, out of date or interpreted differently.

The goal should not be to remove conversations with patients. It should be to make those conversations more useful by ensuring that important information is already available.

Key points

The NHS already shares some information through Summary Care Records and regional Shared Care Records.
These systems are useful but do not yet provide a complete, universally accessible medical history.
The NHS in England is developing a Single Patient Record to improve access to relevant information.
The ambition is for patients to begin accessing this through the NHS App from 2028, with further development over time.
Patients should continue keeping their own medication lists and important medical information while systems become better connected.

Further information

This article describes developments in NHS England. Record-sharing arrangements and digital health programmes may differ in Scotland, Wales and Northern Ireland.

by GAtherton

Medical illustration comparing healthy lungs, ageing lungs with reduced elastic recoil, ABPA and bronchiectasis with airway inflammation and mucus, and pulmonary fibrosis with stiffened lung tissue.

Do Our Lungs Become Less Elastic as We Age? What Aspergillosis Changes

Our lungs change naturally as we get older. They gradually lose some of their ability to spring back after we breathe in, while the chest wall becomes less flexible. But what happens when someone also has aspergillosis, bronchiectasis or asthma?

Can these conditions make breathing more difficult as we age? And does becoming more breathless necessarily mean that aspergillosis is getting worse?

The answer is more complicated than simply saying that our lungs become less elastic.

Key points

Healthy lungs gradually lose some of their elastic recoil with age.
ABPA and bronchiectasis mainly affect the airways, causing inflammation, mucus plugging and sometimes air trapping.
Chronic pulmonary aspergillosis (CPA) can cause fibrosis, making affected lung tissue stiffer and harder to expand.
Increasing breathlessness does not always mean aspergillosis is progressing.
Exercise, pulmonary rehabilitation and effective treatment can improve breathing and activity levels, even when some structural lung damage remains.

What does lung elasticity actually mean?

Healthy lungs contain networks of elastic fibres that allow them to stretch when we breathe in and spring back when we breathe out.

Two important properties help explain this:

Elastic recoil is the tendency of the lungs to return towards their resting size after being inflated.
Compliance describes how easily the lungs expand when pressure is applied.

These properties are related, but they are not the same.

A lung that has lost some elastic recoil may be easier to inflate but less effective at pushing air out. Conversely, a lung affected by fibrosis may have greater elastic recoil but be much harder to expand.

This distinction helps explain why different lung diseases can cause breathlessness in different ways.

Four ways lung mechanics can differ

How do healthy lungs change with age?

As we grow older, the elastic properties of lung tissue gradually change.

The lungs generally lose some elastic recoil, meaning they do not spring back quite as effectively during breathing out. Small airways may close earlier during expiration, leaving more air trapped inside the lungs.

At the same time, the chest wall tends to become less flexible because of changes in the ribs, joints, muscles and surrounding tissues.

These changes can result in:

More air remaining in the lungs after breathing out.
A gradual reduction in the amount of air that can be forcibly exhaled in one second (FEV1).
Less respiratory reserve during strenuous activity.
Greater effort being needed to breathe during exercise.

These are normal features of ageing, although the rate of change varies considerably between individuals.

Importantly, ageing does not simply make lung tissue stiffer. The lungs themselves generally become easier to stretch, while the chest wall becomes less flexible.

How does aspergillosis affect lung elasticity?

Different forms of aspergillosis affect the lungs in different ways.

Allergic bronchopulmonary aspergillosis (ABPA)

ABPA primarily affects the airways through an allergic inflammatory response to Aspergillus.

Inflammation, mucus plugging and bronchiectasis can narrow or obstruct the airways, making it harder to move air in and out.

Some patients develop air trapping, particularly during breathing out.

This is not necessarily caused by a loss of elasticity in the lung tissue itself. Instead, the main problem may be increased resistance to airflow.

If inflammation and mucus plugging improve with treatment, lung function may improve too. However, established bronchiectasis and other structural changes may persist.

Chronic pulmonary aspergillosis (CPA)

CPA can affect the structure of the lung tissue more directly.

Over time, some patients develop fibrosis, pleural thickening, cavities and areas of damaged or destroyed lung.

Fibrosis makes affected lung tissue stiffer and less compliant, meaning that more effort is needed to expand it.

Interestingly, this is different from normal ageing.

While ageing generally reduces elastic recoil, fibrosis can increase the recoil of affected tissue. Unfortunately, this does not mean the lungs work better. Stiff, scarred tissue is harder to inflate and may reduce the volume of air the lungs can hold.

The degree of functional impairment depends on how extensive the changes are and how much healthy lung remains.

Aspergilloma

An aspergilloma is a fungal ball growing within an existing lung cavity.

A small, localised aspergilloma may have little direct effect on overall lung mechanics.

However, the disease that originally caused the cavity, or additional surrounding lung damage, may already have reduced lung function.

Bronchiectasis

Bronchiectasis often occurs alongside ABPA or CPA.

The affected airways become permanently widened and may be prone to mucus retention and recurrent infection.

This can increase resistance to airflow, cause air trapping and contribute to breathlessness.

Some people therefore experience a combination of obstructive and restrictive changes, depending on the extent and nature of their lung disease.

Does becoming more breathless mean aspergillosis is progressing?

Not necessarily.

Breathlessness is influenced by several factors, including lung structure, airway inflammation, mucus retention, respiratory muscle strength, cardiovascular fitness and other medical conditions.

Someone whose aspergillosis is stable may still notice gradually increasing breathlessness because of ageing, reduced physical activity, asthma or other conditions.

Conversely, increasing breathlessness can sometimes indicate a flare of ABPA, progression of CPA, infection or another complication.

The important point is that symptoms alone cannot reliably distinguish these possibilities.

New, persistent or worsening breathlessness should be assessed by a healthcare professional rather than assumed to be a normal consequence of ageing.

Sudden severe breathlessness, particularly with chest pain, fainting or blue lips, requires emergency medical attention.

Can lung function tests distinguish ageing from lung disease?

Lung function testing provides useful information about how well the lungs are working.

Spirometry measures how much air can be exhaled and how quickly.

Two important measurements are:

FEV1: The volume of air forcibly exhaled during the first second.
FVC: The total volume of air that can be forcibly exhaled after taking a full breath.

The relationship between FEV1 and FVC helps identify airflow obstruction.

More detailed pulmonary function tests may measure:

Total lung capacity (TLC): The total amount of air the lungs can contain.
Residual volume (RV): The air remaining after breathing out as fully as possible.
Gas transfer (DLCO or TLCO): How effectively gases pass from the lungs into the blood.

These measurements help clinicians distinguish airflow obstruction, air trapping, restriction and impaired gas transfer.

However, they do not directly measure lung elasticity, and no single test can always identify the cause of breathlessness.

Results are interpreted alongside symptoms, examination, imaging and previous lung function measurements.

Because lung function normally changes with age, clinicians use reference values that account for factors including age, height and sex. Comparing results over time is particularly useful.

Can exercise improve lung elasticity?

Exercise cannot reliably reverse established pulmonary fibrosis or restore the elastic recoil of younger lungs.

However, this does not mean that exercise cannot help.

Regular physical activity and pulmonary rehabilitation can improve cardiovascular fitness, muscle strength and the body's ability to use oxygen efficiently.

This may allow someone to undertake more activity before becoming breathless, even when their underlying lung structure has not changed.

Pulmonary rehabilitation can also help people develop breathing strategies, improve confidence and manage fatigue.

For patients with bronchiectasis, appropriate airway clearance techniques may help remove retained mucus and reduce some of the problems caused by airway obstruction.

Exercise programmes should be adapted to individual abilities and medical circumstances, particularly for people with severe respiratory disease or low oxygen levels.

Can treatment improve lung function?

Sometimes, yes.

If reduced lung function is partly caused by airway inflammation, bronchospasm or mucus plugging, effective treatment may improve airflow.

For example, treating an ABPA flare may reduce inflammation and help restore some previously lost lung function.

However, treatment cannot necessarily reverse permanent structural changes such as established fibrosis or bronchiectasis.

In CPA, successful antifungal treatment may help control infection and limit further damage, but improvement in lung function is not guaranteed.

This is one reason why controlling active disease and preserving the remaining healthy lung are important treatment goals.

What should patients take away from this?

Our lungs change naturally as we age, but these changes are not identical to those caused by aspergillosis.

Ageing tends to reduce elastic recoil.
Fibrosis makes affected lung tissue stiffer.
Airway inflammation and bronchiectasis can make it harder to move air through the lungs.

All three processes may contribute to breathlessness, sometimes in the same person.

Worsening breathlessness does not automatically mean aspergillosis is progressing. Equally, it should not simply be dismissed as ageing.

Understanding the different causes can help patients and clinicians identify which problems might respond to treatment, exercise, airway clearance or pulmonary rehabilitation.

And perhaps most importantly, breathing and exercise tolerance can sometimes improve even when permanent structural changes remain.

Further information

Explore related information on aspergillosis.org:

This article provides general patient information and is not a substitute for individual medical advice. If you notice a change in your breathing, discuss it with your healthcare team.

by GAtherton

Person wearing a well-fitting FFP2 respirator while handling compost and potting plants in a garden.

Face Masks and Aspergillosis: Dust, Gardening and Respiratory Viruses

Key points

People wear masks for different reasons: reducing fungal spore exposure, avoiding respiratory viruses, protecting others, reducing allergens, or limiting exposure to potentially azole-resistant spores.
A well-fitting, certified FFP2, FFP3 or N95 respirator filters airborne particles more reliably than a loose surgical or cloth mask. It does not eliminate exposure.
Evidence that respirators filter particles is much stronger than evidence that they prevent ABPA flare-ups, CPA progression or acquisition of azole-resistant Aspergillus.
For major mould contamination, compost disturbance or heavy dust, avoiding the exposure is preferable to relying on a mask.
Ordinary walking, sitting in the garden and most everyday outdoor activities do not generally require a respirator.

Why might someone with aspergillosis wear a mask?

A patient asking how to stop their glasses fogging while wearing a mask prompted a wider question: what are we trying to protect ourselves against? People with aspergillosis, ABPA, asthma or bronchiectasis may have very different reasons for wearing one. The best choice depends on the activity, the exposure, the person's health and whether the aim is to protect the wearer or other people.

There are two main functions. Inward protection reduces particles breathed in by the wearer. Source control reduces respiratory particles released into shared air. A product that performs one function well does not necessarily perform the other equally well.

Five reasons for wearing a mask: what does the evidence say?

1. Reducing exposure to fungal spores

Aspergillus spores occur naturally in indoor and outdoor air. Activities such as opening compost bags, turning compost heaps, clearing rotting vegetation, disturbing dusty soil and some building work can generate much higher exposures. A correctly fitted particulate respirator can reduce the number of spores inhaled.

What is established: particulate respirators filter airborne particles, and environmental exposure is a recognised route for aspergillosis. What remains uncertain: exactly how much occasional respirator use reduces the chance of developing aspergillosis or worsening established disease. The US CDC recommends exposure-reduction precautions for vulnerable people while noting that they have not been proven to prevent aspergillosis.

For people with profound immune suppression, or those advised to avoid dusty work, not doing the task is usually a better first choice than relying on respiratory protection.

2. Reducing exposure to respiratory viruses

Some people with bronchiectasis or severe lung disease use a respirator on public transport, in crowded waiting rooms or other poorly ventilated indoor settings. Their aim is to reduce inhalation of infectious respiratory aerosols. Respiratory viruses can trigger asthma symptoms or bronchiectasis exacerbations.

What is established: a well-fitting respirator reduces inhaled airborne particles, including virus-containing aerosols. What remains uncertain: how many infections or exacerbations routine mask use prevents in people with aspergillosis specifically. Real-world protection depends on fit, consistency, ventilation, exposure and other precautions.

Vaccination where recommended, ventilation and avoiding close contact with people who are ill remain useful additional measures.

3. Reducing the spread of infection to other people

This is the familiar COVID-era use of a mask as a way to catch some of the particles released when a person breathes, talks or coughs. Surgical masks and well-fitting respirators can provide source control, although performance differs by design and fit.

Important distinction: aspergillosis itself is not ordinarily transmitted from one patient to another by coughing. Source control is relevant to respiratory viruses and other transmissible respiratory infections, not to preventing someone from catching aspergillosis directly from another patient.

An exhalation valve can improve comfort, but some designs allow more unfiltered exhaled air to escape. A non-valved respirator is generally the simpler choice when protecting others is an important aim.

4. Reducing allergic triggers in ABPA

Allergic bronchopulmonary aspergillosis (ABPA) involves an exaggerated immune response to Aspergillus, often in people with asthma or cystic fibrosis. It is reasonable to wonder whether filtering airborne fungal allergens might reduce symptoms.

What is established: a suitable respirator can reduce inhalation of airborne fungal particles during an exposure. What remains uncertain: whether routine mask use reduces ABPA exacerbations, steroid requirements or other long-term outcomes. ABPA also involves fungal persistence in the airways; a mask cannot remove organisms or allergens already present there.

People who consistently notice symptoms during particular dusty or mouldy activities may find exposure avoidance helpful, but a mask should not be presented as an established ABPA treatment.

5. Reducing exposure to azole-resistant Aspergillus spores

Some Aspergillus fumigatus strains are resistant to azole antifungal medicines. Resistance can arise in the environment, including through selection associated with agricultural azole fungicide use, and resistant spores can be inhaled by people who have never taken an antifungal.

What is established: environmental acquisition of azole-resistant strains occurs, and a respirator filters resistant and susceptible spores by the same physical mechanism. What remains uncertain: whether wearing a respirator during particular activities reduces the risk of acquiring a resistant infection or changes treatment outcomes. There is no special mask that selectively filters resistant spores.

Which situations justify extra precautions?

Situation	Practical approach
Walking outside or sitting in the garden	Routine mask use is not generally needed; individual advice may differ.
Opening compost, turning heaps or disturbing rotting leaves	Avoid heavy exposure where possible; ask someone else to do the task, or consider a properly fitting respirator if the task cannot be avoided.
Dusty DIY, loft clearance, demolition or major mould removal	Prefer avoidance or appropriate professional help; do not assume a respirator makes major contamination safe.
Crowded indoor transport or healthcare waiting rooms	A well-fitting respirator is a reasonable optional extra precaution against respiratory viruses.
Bonfire smoke or wildfire smoke	A particulate respirator may reduce fine-particle exposure but does not remove harmful gases; moving away from smoke is better.

Which type of mask?

Surgical masks are mainly designed for medical source control and splash protection; their loose fit limits dependable inward protection. FFP2 and FFP3 respirators are UK/European classes of filtering facepiece respirators, while N95 is a US classification. Certified models must meet defined filtration performance tests, but the protection actually achieved depends heavily on face seal and correct use.

Reusable elastomeric half-mask respirators with appropriate particulate filters can be an option for repeated exposure, but they require careful selection, cleaning, maintenance and correct fitting. A moulded mask is not automatically better than a foldable one. Brand names and advertising claims such as “five-layer” or “HEPA-style” do not replace recognised certification and good fit.

Why do my glasses fog up?

Warm, moist breath escaping upwards around the nose can condense on cooler spectacle lenses. This often indicates an imperfect seal, although fogging alone is not a formal fit test and its absence does not prove a perfect seal.

Try a different size or shape of certified respirator; faces and mask designs vary.
Shape the adjustable nose clip carefully and use the straps as instructed.
A built-in foam nose seal may improve comfort and reduce upward leakage.
Position spectacles so they do not push the respirator away from the face.
Check the seal each time you put on a tight-fitting respirator, following the manufacturer's instructions.
Avoid improvised modifications that damage the mask or interfere with its seal.

Facial hair across the sealing surface can markedly reduce protection. Where respirators are required at work, formal fit testing and appropriate training are important. If several models leak or feel uncomfortable, seek advice from an occupational-health or respiratory-protection specialist.

What about exhalation valves?

Valves may reduce heat and moisture build-up and make exhaling feel easier. They do not guarantee a good seal at the nose, so they may not solve spectacle fogging. They can also reduce source-control performance compared with a similar non-valved respirator. If you are primarily trying to protect yourself from dust or spores, a certified valved respirator may be suitable; if you are also trying to protect other people from respiratory infection, a non-valved model is usually preferable.

What if a respirator makes breathing difficult?

People with asthma, bronchiectasis, CPA or other respiratory conditions may find tight-fitting respirators uncomfortable, particularly during exertion or hot weather. Do not force yourself to continue a task if you feel significantly breathless, dizzy or unwell. Move to cleaner air and remove the respirator safely. Seek medical advice if symptoms are severe or do not settle.

If a respirator is difficult to tolerate, avoiding or delegating the dusty task may be the safest solution. Discuss individual suitability with your respiratory team, particularly if you have severe breathlessness or need respiratory support.

What masks cannot do

They cannot completely eliminate inhalation of spores or viruses.
They cannot remove Aspergillus already present in the airways.
They are not a proven treatment for ABPA or CPA.
They cannot guarantee prevention of azole-resistant infection.
They do not make major mould remediation or heavy dust exposure safe for a vulnerable person.
Particulate respirators do not filter all gases and vapours in smoke.

Making a decision that fits your circumstances

Before choosing a mask, ask: What am I trying to avoid? How much exposure is likely? Can I avoid or reduce the exposure at its source? Can I wear this respirator comfortably and correctly? Someone opening compost bags, someone travelling on a crowded train and someone with ABPA walking in a garden are facing different questions. They do not all need the same answer.

We aim to provide the evidence and practical options, not prescribe an individual course of action. If your risk is unusually high or you are unsure whether a respirator is appropriate, discuss the activity with your respiratory or specialist team.

Can I Sit in My Garden or Go for a Walk Without a Mask?

For most people with ABPA, asthma or bronchiectasis, ordinary outdoor activities do not require a face mask. Sitting in the garden, walking along a street or enjoying a local park are generally reasonable activities. Having a respiratory condition does not mean you must avoid fresh air.

Aspergillus spores are naturally present outdoors and cannot be avoided completely. The more useful distinction is between ordinary background exposure and activities that disturb substantial amounts of potentially spore-containing material.

Generally lower exposure: sitting outdoors, walking on pavements, enjoying a garden without disturbing soil or compost.
Potentially higher exposure: turning compost, handling decaying vegetation, disturbing mouldy materials, demolition work and heavy dust-producing activities.

Weather alone is not a reliable guide to fungal exposure. Spore concentrations vary with fungal species, season, location and local activities. There is no simple rule that everyone with ABPA should wear a mask after rain or on windy days.

If an activity consistently aggravates your respiratory symptoms, consider modifying or avoiding it and discussing the pattern with your clinical team. New or worsening breathlessness, wheezing or chest symptoms should not simply be attributed to fungal spores.

The aim is to reduce avoidable high exposures while continuing to enjoy normal daily life. A respirator may be useful for selected activities, but routine masking outdoors is not generally necessary solely because someone has ABPA or bronchiectasis.

Practical Tips: Using and Looking After Your Respirator

Put your respirator on before exposure

If you decide to use a respirator for an activity that may expose you to large amounts of dust or fungal spores, put it on before entering the area or starting the activity. Waiting until you develop coughing, wheezing or irritation may mean exposure has already occurred.

For particularly high-risk activities, such as turning mouldy compost or removing extensive indoor mould, avoiding the activity or asking someone else to do it may be safer than relying on a respirator.

Keep a spare available

If you regularly use disposable respirators, keeping a clean spare in your bag, car or gardening equipment can be helpful. Store respirators somewhere clean and dry, protected from damage. Replace disposable respirators if they become damaged, wet, visibly dirty or difficult to breathe through, following the manufacturer's instructions.

Look after reusable respirators

Reusable respirators need regular inspection, cleaning and appropriate filter replacement. Follow the manufacturer's instructions for your particular model rather than relying on a fixed number of hours of use.

Check that straps, valves and seals remain in good condition. Replace damaged components, and make sure the respirator still fits properly each time you use it.

Remember: a respirator is one way of reducing exposure, not a guarantee of protection. The most effective precaution may be to avoid or reduce the exposure itself.

What is a lung cavity?

A lung cavity is an abnormal air-containing space that develops within lung tissue. It forms when an area of tissue is damaged or destroyed, leaving a hollow space.

Cavities can vary considerably. Some have thin walls, while others have thick, irregular walls. They may be surrounded by inflammation or scarring, and some contain fluid or fungal material.

A cavity is not the same as a normal airway or an area of bronchiectasis, although these conditions can sometimes appear similar on imaging.

CT scans help doctors distinguish between these different changes and identify whether they are stable or progressing.

Why do lung cavities develop in aspergillosis?

Several forms of aspergillosis can be associated with lung cavities, but they do not all develop in the same way.

Chronic pulmonary aspergillosis (CPA)

CPA is one of the most important causes of persistent lung cavities associated with Aspergillus.

In some people, CPA develops in lungs that already contain cavities or other structural damage from a previous illness. In others, the disease causes existing cavities to enlarge or new cavities to develop.

Over time, cavity walls may become thicker, surrounding lung tissue may become inflamed, and fibrosis (scarring) may develop.

CPA can therefore involve both ongoing disease activity and permanent structural changes.

Aspergilloma (fungal ball)

An aspergilloma is a collection of fungal material that grows within an existing lung cavity.

The fungal ball is not the cavity itself. It occupies a space that has usually developed because of previous lung damage or disease.

Some aspergillomas remain stable for years, while others are associated with symptoms, particularly coughing up blood (haemoptysis).

Even if fungal material decreases or disappears, the underlying cavity may remain.

Invasive pulmonary aspergillosis

Invasive aspergillosis occurs mainly in people whose immune defences are significantly weakened, although it can also affect some critically ill patients and people with other important risk factors.

The infection can damage lung tissue rapidly. As damaged tissue breaks down, cavities may develop.

Some of these cavities subsequently shrink or heal as the infection is controlled, although residual scarring or other permanent abnormalities may remain.

Allergic bronchopulmonary aspergillosis (ABPA)

ABPA primarily causes allergic inflammation of the airways and is associated with asthma, mucus plugging and bronchiectasis.

Lung cavities are not a typical feature of ABPA itself.

If a patient with ABPA develops a cavity, doctors may investigate other explanations, including previous infection, coexisting CPA or another lung condition.

Other causes of lung cavities

Not every cavity seen in someone with aspergillosis is caused by Aspergillus.

Other possible causes include:

Previous tuberculosis or other severe lung infections.
Certain bacterial infections, including lung abscesses.
Non-tuberculous mycobacterial (NTM) disease.
Some inflammatory or autoimmune conditions.
Occasionally, lung cancer or other serious conditions.

Doctors consider the patient's history, symptoms, CT findings and laboratory results before deciding what a cavity represents.

Can lung cavities actually heal?

Yes, some lung cavities can become smaller or close over time, but complete healing is not always possible.

The likelihood of improvement depends on several factors, including the underlying disease, the amount of tissue destruction, whether the cause can be successfully treated and the extent of established scarring.

A cavity caused by an acute infection may gradually become smaller as inflammation resolves and the surrounding lung recovers.

However, a long-standing cavity associated with CPA, previous tuberculosis or extensive fibrosis may represent permanent structural damage.

In these circumstances, treatment may control the disease without restoring the lung to its original appearance.

What happens to cavities during treatment for CPA?

Antifungal treatment for CPA aims to control fungal disease, improve or stabilise symptoms, and prevent further lung damage.

Changes seen on CT scans may include:

Reduced inflammation around a cavity.
Thinner cavity walls.
Less material within a cavity.
Reduction in the size of some cavities.
Stabilisation of previously enlarging cavities.
Reduced development of new cavities or further fibrosis.

Not every patient will show all these changes. In some cases, the most important result is that the cavities have stopped enlarging and the surrounding lung tissue is no longer deteriorating.

Other patients may continue to have symptoms or radiological progression despite treatment and require reassessment.

A stable CT scan can be encouraging, even when the cavity is still visible. However, scans must always be interpreted alongside symptoms and other clinical findings.

Does a cavity remaining mean the Aspergillus infection is still active?

Not necessarily.

A cavity may remain because the lung tissue has been permanently altered. Its continued presence does not, by itself, prove that CPA is still progressing.

Equally, an unchanged cavity does not automatically mean the disease is completely inactive.

Doctors assess several pieces of information together, including:

Changes in symptoms and general health.
CT appearances over time.
Aspergillus antibody results, particularly Aspergillus IgG where appropriate.
Inflammatory markers and other blood tests.
Sputum culture or molecular tests when indicated.
Response to treatment and any treatment complications.

No single result reliably tells the whole story.

How do doctors monitor lung cavities?

CT scans

CT scanning is particularly useful because it provides detailed images of cavities, their walls and the surrounding lung tissue.

Doctors may look for:

Changes in cavity size or wall thickness.
New cavities.
Fungal balls or other material within cavities.
Inflammation around the affected areas.
Progression or improvement in fibrosis.
Changes elsewhere in the lungs.

Comparing scans taken at different times is often more informative than interpreting one scan in isolation.

The timing of repeat scans depends on the patient's condition, treatment and previous findings.

Blood tests

Aspergillus IgG antibodies are an important part of diagnosing many forms of CPA.

Antibody levels may also be considered during follow-up, but they do not consistently reflect disease activity in every patient.

Other tests, such as C-reactive protein (CRP), may provide information about inflammation but are not specific to Aspergillus infection.

Blood tests are also important for monitoring the safety of antifungal treatment, including liver function and, for some medicines, drug concentrations.

Sputum testing

Sputum samples may be tested for Aspergillus and other organisms, including bacteria and mycobacteria.

However, a negative sputum culture does not exclude CPA, and a positive result must be interpreted in clinical context.

Symptoms and quality of life

Patients' experiences are an essential part of monitoring.

Changes in breathlessness, fatigue, cough, sputum, weight, exercise tolerance or haemoptysis may be important even when imaging changes appear relatively small.

Tell your team how the illness affects everyday activities, not just whether individual symptoms are present.

Can damaged lung tissue grow back?

The lungs have some ability to recover after injury, particularly when inflammation resolves and the underlying tissue structure has been preserved.

However, lung tissue that has been extensively destroyed or replaced by fibrosis generally cannot regenerate into normal functioning lung tissue.

This explains why someone may have successful treatment for aspergillosis but continue to experience breathlessness or reduced lung capacity.

Recovery of lung function depends partly on how much healthy lung remains and whether other problems, such as asthma, bronchiectasis or deconditioning, can be improved.

What can patients do to protect their remaining lung function?

Although you cannot directly make a cavity close, there are practical ways to support your respiratory health.

Follow your agreed treatment plan

If antifungal treatment has been prescribed, take it as directed and attend recommended monitoring appointments.

Tell your team if you experience side effects or have difficulty taking your medication. Do not stop or change treatment without discussing it with your prescriber.

Manage other respiratory conditions

Asthma, bronchiectasis, COPD and other lung conditions may contribute to symptoms and further respiratory damage.

Appropriate management of these conditions is important alongside treatment for aspergillosis.

Corticosteroids may be necessary for ABPA, asthma or other illnesses, but they can also increase susceptibility to some infections. The benefits and risks need individual assessment.

Never reduce or stop prescribed corticosteroids abruptly without medical advice. Long-term treatment can suppress the body's natural cortisol production.

Stay as physically active as your condition allows

Appropriate exercise and pulmonary rehabilitation can help maintain muscle strength, confidence and physical function.

They do not directly repair cavities, but they may help people make better use of their remaining lung capacity.

For further information, read our guide to physiotherapy for aspergillosis, breathing, mucus clearance and keeping active.

Seek help with airway clearance when needed

Some patients, particularly those with bronchiectasis, benefit from respiratory physiotherapy techniques to help clear mucus.

These techniques should be tailored to individual needs. People with a history of haemoptysis should seek professional advice about suitable airway-clearance methods.

Protect your general health

Avoid smoking, maintain adequate nutrition, discuss recommended vaccinations with your healthcare team and seek advice promptly when respiratory symptoms deteriorate.

These measures support general lung health, although they cannot reverse established cavities or scarring.

What if a cavity continues to grow?

An enlarging cavity does not always mean that antifungal treatment has failed, but it is a finding that requires careful assessment.

Doctors may consider:

Whether CPA remains active or is progressing.
Whether antifungal treatment is being absorbed adequately.
Whether the Aspergillus is resistant to the prescribed medicine.
Whether another infection or lung disease is contributing.
Whether treatment needs to be changed.
Whether specialist procedures or surgery should be considered in selected cases.

Management depends on the overall clinical situation. Surgery is not suitable for every patient, particularly when lung function is limited or disease affects several areas of the lungs.

What about the risk of bleeding?

Some people with CPA or an aspergilloma experience haemoptysis, which means coughing up blood.

Bleeding can occur because abnormal or enlarged blood vessels develop around areas of chronic inflammation and damaged lung tissue.

The risk cannot be determined simply by whether a cavity is large or small, or whether it contains a fungal ball.

If you cough up blood, seek prompt medical advice, even if the amount is small. Your clinical team can advise how to respond based on your individual circumstances.

Call 999 for heavy or ongoing bleeding, or if coughing up blood is accompanied by severe breathlessness, faintness or collapse.

For some patients with significant or recurrent haemoptysis, doctors may consider bronchial artery embolisation, a procedure intended to block blood vessels responsible for bleeding.

Questions to ask your specialist

If you have lung cavities, the following questions may help you understand your condition:

What caused my lung cavity?
Is the cavity associated with active CPA or mainly with previous lung damage?
Has it changed since my previous CT scan?
What signs would indicate that treatment is working?
Is it realistic to expect the cavity to shrink, or is stability our main goal?
How much of my breathlessness is caused by permanent lung damage?
What can I do to maintain my remaining lung function?
What symptoms should prompt me to contact the clinical team?

Understanding the purpose of treatment can make follow-up scans less worrying. A scan showing that nothing has deteriorated may represent an important achievement.

Key points: Can lung cavities heal?

Some lung cavities can shrink or close, particularly when they develop following an acute illness and extensive permanent damage has not occurred.
Long-standing cavities in CPA often persist, even when treatment successfully controls the disease.
A persistent cavity does not necessarily mean ongoing active infection.
Treatment success is not measured only by cavity disappearance. Stabilisation, symptom improvement and prevention of further lung damage are important outcomes.
CT scans, symptoms and laboratory results must be considered together when assessing progress.
Permanent scarring cannot usually be reversed, but rehabilitation and good respiratory care can help maintain function and quality of life.

The most important message

It is natural to hope that treatment will make a lung cavity disappear. For some people, that may happen. For many others, particularly those living with chronic pulmonary aspergillosis, the cavity will remain.

That does not mean treatment has been unsuccessful.

Preventing further damage, controlling the disease and helping you live as well as possible with your remaining lung function are meaningful goals.

The most useful question may therefore be not simply "Has my cavity disappeared?" but:

"Is my lung disease stable, and what can we do to protect my health and quality of life?"

This article provides general educational information and does not replace assessment by your respiratory specialist. The causes, risks and treatment of lung cavities vary between individuals.

by GAtherton

Clinician reviewing lung research data in an illustration about new findings in aspergillosis care.

Aspergillosis Research Update — 12 October 2026

This week's research highlights include promising urine tests for invasive aspergillosis, new evidence about isavuconazole for chronic pulmonary aspergillosis (CPA), and research into antifungal resistance and the diagnosis of fungal lung infections.

These studies offer reasons for cautious optimism. Most are early-stage or observational investigations, however, and do not mean that established diagnostic or treatment recommendations have changed.

1. Could a urine test make invasive aspergillosis easier to diagnose?

Diagnosing invasive aspergillosis can be difficult, especially in people receiving treatment for blood cancers or whose immune systems are weakened. Doctors currently use a combination of scans, blood tests, respiratory samples and sometimes bronchoscopy.

Two new studies investigate whether substances released by Aspergillus fungi can be detected in urine.

Baburina and colleagues evaluated the urinary MycoMEIA Aspergillus assay, which detects fungal glycans. The study reported promising diagnostic accuracy in its evaluated population. However, further testing is needed to establish how reliably the assay performs in everyday clinical settings and in different patient groups.

A second prospective study by Patil and colleagues investigated a combination of urinary triacetylfusarinine C (uTafC), serum galactomannan and serum pentraxin-3 in patients with haematological malignancies.

Why this matters: A reliable urine-based test could make investigations easier for some seriously ill patients and potentially support earlier diagnosis. These tests are still being evaluated and cannot yet replace established diagnostic methods.

Research: Baburina et al., Clinical Infectious Diseases (2026); Patil et al., Clinical Microbiology and Infection (2026).

2. Isavuconazole may offer an alternative for people with chronic pulmonary aspergillosis

People with CPA often require many months or even years of antifungal treatment. Finding a medicine that controls infection without causing unacceptable side effects can be challenging.

Fama and colleagues examined the use of isavuconazole and voriconazole in a retrospective study of 40 patients with CPA.

The investigators reported frequent use of isavuconazole, often following difficulties with voriconazole tolerability, blood concentrations or interactions with other medicines. Therapeutic drug monitoring was used to help guide dosing, including reduced doses in selected patients.

Why this matters: Isavuconazole may provide another treatment option when other azole antifungals are unsuitable. However, this small observational study cannot prove that one drug is more effective than another. Decisions about treatment and dose adjustment require specialist supervision.

Research: Fama et al., Antimicrobial Agents and Chemotherapy (2026).

3. Are improvements in survival from invasive aspergillosis slowing down?

Antifungal treatments have improved considerably over recent decades, but invasive aspergillosis remains a serious infection, particularly in patients with haematological malignancies.

Szvalb and colleagues examined ten-year trends in deaths among patients with culture-confirmed invasive aspergillosis. Importantly, the researchers distinguished deaths directly attributable to aspergillosis from deaths where the infection contributed alongside other serious illnesses.

The study reported a decline in mortality directly attributable to aspergillosis, while highlighting the continuing complexity of outcomes in patients with blood cancers.

Why this matters: Better antifungal drugs are only one part of improving survival. Early diagnosis, immune recovery and treatment of underlying disease also matter. The findings should not be interpreted as showing that antifungal treatment has stopped improving.

Research: Szvalb et al., Clinical Infectious Diseases (2026).

4. Could combining antifungal drugs help overcome resistance?

Resistance to azole antifungal medicines is a growing concern, particularly in infections caused by Aspergillus fumigatus.

Wurster and colleagues investigated the combination of isavuconazole and micafungin against three azole-resistant A. fumigatus isolates.

The laboratory investigation found evidence of synergistic antifungal and immune-related activity, suggesting that the two drugs may work together in ways that deserve further investigation.

Why this matters: Combination treatment may eventually provide additional options for difficult resistant infections. However, laboratory synergy does not demonstrate improved survival or effectiveness in patients. Clinical evidence is still needed.

Research: Wurster et al., Journal of Infectious Diseases (2026).

5. Can advanced DNA sequencing distinguish fungal infection from colonisation?

Finding Aspergillus in the respiratory tract does not always mean it is causing disease. The fungus may sometimes be present without invading tissue or producing a clinically significant infection.

Zhao and colleagues studied metagenomic next-generation sequencing (mNGS) of bronchoalveolar lavage fluid in patients with suspected invasive pulmonary aspergillosis.

This technology can detect genetic material from a wide range of microorganisms. The researchers investigated how sequencing findings, other microorganisms and clinical information might help distinguish infection from colonisation.

Why this matters: More sensitive tests can identify fungi that conventional methods miss, but a positive result still needs careful interpretation. Symptoms, imaging, immune status and other laboratory findings remain essential.

Research: Zhao et al., Microbiology Spectrum (2026).

Other research this week

Immune cells in lung samples: Cho and colleagues studied bronchoalveolar lavage fluid from 63 patients with blood cancers and invasive pulmonary aspergillosis. Immune-cell patterns reflected blood-cell abnormalities and fungal burden but did not reliably predict short-term outcomes. Read the study.

How fungi regulate growth and virulence: Gao and colleagues investigated long non-coding RNAs involved in fungal biology. This is fundamental research rather than an immediately applicable diagnostic or treatment advance. Read the study.

Allergic bronchopulmonary mycosis caused by another fungus: A case report describes allergic bronchopulmonary mycosis associated with Talaromyces boninensis. It provides a reminder that allergic bronchopulmonary fungal disease is not always caused by Aspergillus. Read the case report.

What should patients take away from this week's research?

Diagnosis: Urine testing may eventually make diagnosing invasive aspergillosis easier, but established tests remain important.
CPA treatment: Isavuconazole is an alternative worth discussing with a specialist when other antifungals cause problems.
Drug resistance: Researchers continue to investigate combinations of antifungal medicines, although clinical benefits are not yet established.
Interpreting results: Finding fungal material in a sample does not, by itself, prove that it is causing disease.

This research summary is provided for education and should not be used to change prescribed treatment without advice from a healthcare professional.

by GAtherton

Patient discussing steroid-induced adrenal insufficiency, sick-day rules and emergency treatment planning with a healthcare professional.

Steroid-Induced Adrenal Insufficiency: Understanding the Risks and Staying Safe

Many people taking long-term corticosteroids worry about adrenal crisis. Some are frightened of going to sleep in case they do not wake up. Others feel unexpectedly unwell when reducing their steroid dose, while some discover that nobody has explained what to do with their medication when they become ill.

These concerns deserve to be taken seriously. However, adrenal suppression, adrenal insufficiency and adrenal crisis are not the same thing. Understanding the differences, recognising problems during steroid reduction and having a clear plan for illness can make living with the condition safer and less frightening.

This is particularly relevant to people with allergic bronchopulmonary aspergillosis (ABPA), severe asthma and other respiratory conditions who may need repeated or prolonged corticosteroid treatment. Certain antifungal medicines can also increase the effects of some corticosteroids, adding to the risk of adrenal suppression.

What is steroid-induced adrenal insufficiency?

Your adrenal glands normally produce cortisol, a hormone that helps regulate blood pressure, blood glucose, metabolism and the body's response to illness or physical stress.

Cortisol production is controlled by signals from the brain, particularly the hypothalamus and pituitary gland. Together with the adrenal glands, these form the hypothalamic-pituitary-adrenal (HPA) axis.

When you take corticosteroid medicines, such as prednisolone, methylprednisolone or hydrocortisone, the body senses that sufficient glucocorticoid is available and may reduce its own cortisol production.

With prolonged exposure, the adrenal glands may become less able to produce cortisol when it is needed. This is called glucocorticoid-induced adrenal insufficiency, sometimes described as secondary or tertiary adrenal insufficiency.

The risk depends on the dose, duration, formulation, route of administration, other medicines and individual susceptibility. Oral steroids are an important cause, but inhaled, injected, nasal and topical corticosteroids can also contribute, particularly with prolonged use, high exposure or interacting medicines.

For a more detailed explanation, read Understanding Steroids, Cortisol, ACTH and Adrenal Suppression in Aspergillosis.

Adrenal suppression is not the same as adrenal crisis

This distinction is important because the terms are sometimes used interchangeably, creating unnecessary anxiety.

Adrenal suppression means the body's normal cortisol-producing system has been reduced by corticosteroid exposure. The degree of suppression varies.
Adrenal insufficiency means the body cannot produce enough cortisol for its needs, particularly when steroid treatment has been reduced or stopped, or during illness.
Adrenal crisis is an acute, potentially life-threatening shortage of glucocorticoid activity that can cause severe illness and circulatory collapse. It requires immediate emergency treatment.

Not everyone with adrenal suppression develops clinically significant adrenal insufficiency, and not everyone with adrenal insufficiency experiences an adrenal crisis.

For people receiving appropriate treatment and following a suitable illness-management plan, adrenal crisis is not an inevitable outcome. Nevertheless, the risk must be recognised because delayed treatment can be dangerous.

Could I have an adrenal crisis while asleep?

Some patients describe a particular fear of going to sleep and not waking up. This may arise after learning that adrenal crisis can be fatal.

Having adrenal insufficiency does not mean that someone is likely to die in their sleep. An unexpected overnight crisis is not the usual course in a person who is well, receiving appropriate glucocorticoid replacement and following their prescribed treatment plan.

However, serious illness, infection, repeated vomiting, missed essential medication or an inability to absorb oral steroids can create a dangerous shortage of cortisol activity. Deterioration can sometimes occur rapidly.

Rather than living in constant fear, the most useful protection is to understand your individual risk, take prescribed medication reliably, recognise warning signs and have clear emergency instructions.

If anxiety about adrenal crisis is disrupting your sleep or daily life, discuss it with your endocrine or prescribing team. A clear written plan may help address uncertainty.

Why do I feel so unwell when reducing steroids?

This is one of the most common and confusing experiences reported by people reducing long-term corticosteroid treatment.

Symptoms may include profound tiredness, weakness, muscle or joint aches, nausea, low mood, dizziness and a general feeling of being unwell.

There are three important possible explanations, and more than one may occur at the same time.

1. Glucocorticoid withdrawal syndrome

After prolonged steroid treatment, the body may need time to adapt to lower glucocorticoid exposure.

People can experience fatigue, muscle aches, joint pain, sleep disturbance and low mood even while receiving steroid doses that are sufficient to prevent adrenal crisis.

This is known as glucocorticoid withdrawal syndrome. It does not necessarily mean that the adrenal glands have failed or that an adrenal crisis is developing.

2. Adrenal insufficiency

As the steroid dose approaches the amount normally produced by the body, inadequate recovery of the HPA axis may become clinically important.

The body may not yet be able to produce enough cortisol independently. Symptoms can resemble withdrawal syndrome, making the two difficult to distinguish without clinical assessment.

Recovery can take weeks, months or sometimes considerably longer. The timing varies between individuals.

3. Return of the underlying respiratory disease

Corticosteroids suppress inflammation. Reducing them may allow symptoms of ABPA, asthma or another inflammatory condition to return.

Increasing breathlessness, wheezing, coughing or mucus production may therefore reflect worsening respiratory disease rather than adrenal insufficiency.

This is particularly difficult in aspergillosis because fatigue and weakness can accompany both respiratory illness and steroid-related problems.

The important message: Feeling unwell during steroid reduction does not automatically mean you are developing an adrenal crisis. However, significant or persistent symptoms should be discussed with your clinical team, and severe deterioration requires urgent assessment.

How should steroids be reduced safely?

There is no single tapering schedule suitable for everyone.

The rate of reduction depends on the underlying condition, the steroid dose and duration, the risk of adrenal suppression and how the patient responds.

When steroids are still needed to control active ABPA or asthma, the priority is to manage that disease safely. Once the underlying condition is adequately controlled, the dose may be reduced towards physiological replacement levels under clinical supervision.

At lower doses, the possibility of adrenal insufficiency becomes particularly relevant. Some patients need slower reductions, clinical reassessment or tests of adrenal recovery.

The 2024 European Society of Endocrinology and Endocrine Society guideline advises that routine adrenal testing is generally unnecessary while patients remain on supraphysiological glucocorticoid doses or still require glucocorticoids for their underlying disease. When assessing recovery at physiological doses, morning serum cortisol is usually the initial test.

Never stop long-term corticosteroid treatment suddenly or change a tapering schedule without appropriate medical advice.

What happens when I become ill?

Normally, the body produces more cortisol during significant physical stress, such as a serious infection, injury or surgery.

People with adrenal insufficiency may be unable to increase cortisol production sufficiently. They may therefore need additional glucocorticoid treatment during illness, commonly called sick-day rules or stress dosing.

This is a crucial aspect of adrenal safety, yet some patients report that they have never been given clear instructions.

Anyone with confirmed adrenal insufficiency, or who is considered at clinically significant risk of adrenal suppression, should know whether they need illness-related steroid adjustments and what those adjustments are.

Instructions depend on the person's diagnosis, current steroid treatment, degree of risk and clinical circumstances. Patients should receive an individualised plan from their prescribing or endocrine team.

Illness that may require additional steroids

Examples include a significant infection with fever, an illness causing marked physical stress, serious injury or surgery.

Mild everyday symptoms do not necessarily require additional steroid treatment. The distinction should be explained in your personal sick-day plan.

Do not improvise additional doses without knowing the instructions that apply to you.

Vomiting or diarrhoea

Vomiting is particularly important because oral steroid medication may not be absorbed or retained.

People who depend on glucocorticoid replacement must have clear instructions about what to do if they vomit after taking medication, have repeated vomiting or develop severe diarrhoea.

If you cannot keep essential steroid medication down, follow your emergency plan and seek urgent medical care. An emergency glucocorticoid injection may be required.

People prescribed an emergency injection kit should be trained in its use, and family members or carers may also benefit from training.

Does every kind of stress mean I need extra steroids?

People with adrenal insufficiency are often told that they need additional steroids during stress. This can be confusing because the word "stress" describes many different experiences, from infection and surgery to anxiety, exercise and hot weather.

Not every stressful situation requires additional steroid medication. The important question is whether the situation creates a significant additional demand for cortisol that your body may be unable to meet.

Physical illness and injury

Fever, significant infections, major injuries and surgery are well-recognised situations in which people with adrenal insufficiency may need additional glucocorticoids.

Follow your individual sick-day plan. Severe illness, repeated vomiting or inability to retain essential medication may require emergency injected steroids and urgent medical care.

Hot weather and dehydration

Ordinary hot weather does not automatically mean you need to increase your steroid dose.

However, excessive heat can cause dehydration, dizziness, low blood pressure and heat-related illness. These problems may be particularly important for someone with adrenal insufficiency.

During hot weather, drink sufficient fluids, avoid prolonged overheating and take precautions against dehydration. If you become seriously unwell, collapse or cannot retain medication, seek urgent medical help and follow your emergency steroid plan.

Anxiety and emotional stress

Ordinary worry, anxiety or everyday emotional stress does not usually require additional steroid medication.

Severe psychological stress, such as an exceptionally distressing event, may sometimes justify temporary adjustments under an individualised endocrine plan. Guidance is less precise in this area than for fever, surgery or major physical illness.

Anxiety can also cause physical symptoms such as palpitations, nausea, sweating and dizziness. These can overlap with symptoms associated with adrenal insufficiency, making the situation particularly worrying.

Do not routinely increase steroid doses in response to anxiety unless this is part of your agreed treatment plan. If symptoms are severe, persistent or accompanied by signs of acute illness, seek medical assessment rather than assuming they are caused by anxiety.

Exercise and physical exertion

Normal daily activities and moderate exercise do not usually require additional steroids in people receiving appropriate replacement treatment.

Unusually strenuous or prolonged exertion may require individual advice, particularly in people who have previously experienced difficulties during exercise.

Discuss demanding activities, endurance events or physically stressful travel with your endocrine team if you have confirmed adrenal insufficiency.

The practical message: Ask your clinical team to explain which kinds of stress require additional steroids in your circumstances. A written sick-day plan should distinguish everyday activities from significant illness and emergencies.

How do I recognise a possible adrenal crisis?

Adrenal crisis is a medical emergency. Symptoms can develop during an acute illness or following inadequate glucocorticoid exposure.

Warning features may include:

Severe weakness or sudden marked deterioration.
Collapse, fainting or very low blood pressure.
Confusion, unusual drowsiness or reduced consciousness.
Persistent vomiting or severe diarrhoea, especially when oral steroids cannot be retained.
Severe abdominal pain or other symptoms of serious acute illness.

These symptoms are not unique to adrenal crisis. Severe infection, dehydration and other emergencies may cause similar problems. Patients should not attempt to distinguish these conditions at home when seriously unwell.

If adrenal crisis is suspected, call 999 immediately. Tell the emergency team that the person has adrenal insufficiency or may have steroid-induced adrenal suppression.

If an emergency glucocorticoid injection has been prescribed, administer it according to the patient's emergency instructions. Do not delay emergency treatment while waiting for blood tests or confirmation of the diagnosis.

In hospital, suspected adrenal crisis requires prompt parenteral glucocorticoid treatment and appropriate intravenous fluids. Emergency treatment should not be delayed for diagnostic testing.

Should I carry a steroid emergency card?

People with adrenal insufficiency, and some people at risk because of current or recent corticosteroid treatment, should carry an appropriate steroid emergency card.

In the UK, the NHS Steroid Emergency Card helps healthcare professionals recognise patients who may require urgent steroid treatment during illness or medical emergencies.

A card does not mean that a crisis is expected. It is a practical safety measure, particularly if the patient is unable to explain their medical history.

Ask your GP, pharmacist or specialist team whether you need a card, and ensure your medical records clearly document any confirmed adrenal insufficiency or significant risk.

Further information is available from NHS England: Steroid Emergency Card patient safety guidance.

Why are antifungal medicines important?

This issue is particularly relevant to people with aspergillosis.

Azole antifungal medicines, including itraconazole, voriconazole and posaconazole, can inhibit enzymes involved in the breakdown of certain corticosteroids.

As a result, some corticosteroids may remain in the body longer or produce greater systemic effects than expected.

Interactions involving inhaled corticosteroids, particularly fluticasone and some other preparations, can lead to excessive glucocorticoid exposure, Cushingoid features and suppression of the body's own cortisol production.

Adrenal insufficiency may then become apparent when the interacting antifungal or corticosteroid is reduced or stopped.

Importantly, the interaction can change when either medicine is started or discontinued. Treatment changes may therefore require coordinated review by the respiratory, pharmacy and endocrine teams.

Never assume that inhaled corticosteroids cannot cause adrenal suppression. If you take an azole antifungal alongside any corticosteroid, ask your specialist pharmacist or prescriber to check the combination.

Read more about antifungal drug interactions.

Can my adrenal glands recover?

Yes. Many people recover normal cortisol production after reducing or stopping glucocorticoid treatment, although recovery can be slow.

Some recover within weeks or months, while others require replacement treatment for much longer. Occasionally, suppression persists for years.

Recovery depends on several factors and cannot reliably be predicted from symptoms alone.

Your clinical team may use morning cortisol measurements and, when appropriate, additional endocrine investigations to assess recovery.

Until recovery has been demonstrated or your specialist advises otherwise, continue following the steroid safety instructions provided to you.

What should I ask my doctor?

If you have taken long-term steroids, are reducing treatment or have been diagnosed with adrenal insufficiency, these questions may help:

Do I have confirmed adrenal insufficiency, or am I considered at risk of developing it?
Am I currently taking enough glucocorticoid to cover my normal daily requirements?
Do I need a steroid emergency card?
What exactly should I do with my steroid medication if I develop a fever or significant infection?
What should I do if I vomit or cannot keep my medication down?
Do I need an emergency injection kit, and who will teach me to use it?
Could my antifungal medication be increasing the effects of my corticosteroids?
How will we assess whether my adrenal function has recovered?
Who should I contact if I feel unwell during steroid tapering?

Ask for your illness-management instructions in writing. This is especially helpful when different teams are involved in your care.

Living with adrenal insufficiency without living in fear

It is understandable to be frightened after learning that adrenal crisis can be life-threatening. Some people become particularly anxious about sleeping, infections, travelling or being alone.

But having adrenal insufficiency does not mean that an emergency is constantly about to happen.

Most day-to-day management involves taking prescribed medication correctly, understanding when additional treatment may be needed, keeping appropriate emergency information available and seeking help promptly when seriously unwell.

Equally, patients should not be expected to work out illness dosing or emergency treatment for themselves. Clear instructions and access to professional advice are essential parts of safe care.

The aim is not to make patients constantly alert for disaster. It is to help them recognise when action is genuinely needed and feel confident that they know what to do.

Key points

Adrenal suppression is not the same as adrenal crisis. Having suppressed cortisol production does not mean a crisis is inevitable.
Feeling unwell during steroid tapering has several possible causes. Withdrawal symptoms, adrenal insufficiency and worsening respiratory disease may overlap.
Illness dosing is an essential safety issue. People with confirmed adrenal insufficiency or significant risk should have clear, individualised instructions.
Vomiting and inability to retain essential steroids require particular attention. Follow your emergency plan and seek urgent help.
Suspected adrenal crisis is an emergency. Call 999 and follow prescribed emergency injection instructions.
Antifungal interactions matter. Azole medicines can increase exposure to certain corticosteroids and contribute to adrenal suppression.
Adrenal function can recover. Recovery varies and should be assessed with appropriate clinical guidance.

Living with CPA: What matters most to patients?

Chronic pulmonary aspergillosis (CPA) is often described in terms of lung damage, fungal infection, scans and antifungal treatment. But these medical descriptions do not always capture what matters most to people living with the condition.

In October 2021, we asked members of our aspergillosis patient support community a simple question:

What aspect(s) of your current quality of life are you most concerned about and would like to improve the most?

The poll was aimed specifically at people living with CPA, and 55 patients responded.

What did patients tell us?

Three concerns stood out particularly strongly:

Fatigue: Persistent exhaustion and reduced energy.
Breathlessness: Difficulty breathing during everyday activities.
Loss of fitness: Reduced stamina, strength and ability to remain active.

These were the leading concerns in the poll, but patients also identified a much wider range of difficulties.

Other concerns included anxiety, coughing, side effects from antifungal medication, weight loss and changes in emotional wellbeing.

Some respondents identified only one concern, while others selected as many as 15. This illustrates how differently CPA can affect people's everyday lives.

The original patient survey

Survey date: 6 October 2021
Participants: 55 people with CPA
Setting: Aspergillosis patient support community Facebook poll

Original survey chart: Patient-reported quality-of-life concerns among 55 respondents with CPA, October 2021.

Why fatigue matters so much

Fatigue was one of the most prominent concerns. For people with CPA, tiredness can be more than simply needing extra sleep. It may affect concentration, independence, social activities and the ability to manage ordinary daily tasks.

Fatigue may have several contributing causes, including chronic illness, disturbed sleep, other lung conditions, medication effects and reduced physical conditioning.

Read more in our guides to managing fatigue and energy with aspergillosis.

Breathlessness and loss of fitness

Breathlessness and reduced fitness were also major concerns.

These problems can reinforce one another. Breathlessness may discourage activity, while reduced activity can lead to loss of muscle strength and stamina, making everyday tasks more demanding.

Appropriate exercise, pacing, physiotherapy and pulmonary rehabilitation may help some patients improve their confidence and physical functioning, even when underlying lung damage cannot be reversed.

More than a lung infection

One of the most important findings was the diversity of concerns patients identified.

Alongside recognised CPA symptoms, people raised issues involving emotional wellbeing, medication side effects, changes in weight and practical restrictions on everyday life.

These experiences remind us that managing CPA involves more than controlling fungal infection. Treatment decisions and follow-up should also consider how patients are feeling and functioning.

A scan or blood test may provide valuable information about disease activity, but it cannot fully describe someone's quality of life.

What can we learn from this survey?

The survey helped identify subjects that patients wanted more information and support about, particularly fatigue, breathlessness and maintaining physical activity.

These concerns remain important topics for patient education, support meetings and conversations with healthcare professionals.

The findings also illustrate why asking patients directly about their priorities can reveal needs that may receive less attention during routine clinical assessments.

Understanding the limitations

This was an informal, self-selected poll among members of an online patient support community, not a representative clinical study.

Respondents could select multiple concerns. The results therefore describe the priorities of these 55 participants, rather than establishing how common particular symptoms are among all people with CPA.

The poll was conducted in 2021, so it should also be understood as a historical snapshot of patient experience.

Nevertheless, it provides valuable insight into the concerns that motivated members of our community to seek information and support.

What matters most to you?

People living with CPA may have very different priorities. Some are most concerned about breathlessness or fatigue. Others worry about treatment side effects, uncertainty about the future, or maintaining independence.

If you live with CPA, consider discussing the symptoms and difficulties that most affect your quality of life with your healthcare team. These concerns are an important part of planning your care.

Source: Aspergillosis patient support community poll, 6 October 2021, 55 respondents. Historical patient experience information.

by GAtherton

Person organising prescribed medicines using a weekly pill organiser, medication list and smartphone reminders.

Managing Your Aspergillosis Medicines: Practical Tips for Staying Safe

Living with aspergillosis can mean taking several medicines every day, sometimes for months or years. These may include antifungal medicines, inhalers, corticosteroids, antibiotics and treatments for other health conditions.

Keeping track of everything can become difficult, particularly when you are tired, unwell or experiencing side effects. Fortunately, a few simple routines can make treatment easier to manage and reduce the risk of mistakes.

This guide explains how to organise your medicines, avoid common problems and work effectively with your healthcare team.

Why medication management matters

Some medicines used to treat aspergillosis require particularly careful handling. Antifungal medicines can interact with other prescribed treatments, and certain medicines need regular blood tests or specific instructions about when and how to take them.

People with ABPA may also take corticosteroids, while those with CPA may require long courses of antifungal treatment. Some patients have other conditions, such as asthma, bronchiectasis or diabetes, which add further medicines to their daily routine.

Good medication management helps you:

Take the correct medicine at the correct dose and time.
Avoid accidentally missing or doubling doses.
Recognise possible side effects.
Keep track of blood tests and follow-up appointments.
Make sure different healthcare professionals know what you are taking.
Feel more confident about managing treatment at home.

1. Keep an up-to-date medication list

One of the most useful things you can do is keep a current list of all your medicines.

Include:

The name of each medicine.
The strength and prescribed dose.
When and how you take it.
Why you are taking it.
Any allergies or previous serious reactions.
Over-the-counter medicines, herbal products and supplements.

Keep a copy on your phone or in your wallet. A printed copy can be particularly helpful during an unexpected hospital admission or when attending a new clinic.

Update your list whenever a medicine is started, stopped or changed.

Practical tip: Ask your pharmacist or GP practice for a current repeat prescription list, then check that it matches what you actually take. Hospital-prescribed medicines may not always appear immediately on your GP record.

2. Make taking medicines part of your daily routine

Taking medicines consistently can be challenging when different treatments have different schedules.

Some people find it helpful to use:

Phone alarms or medication reminder apps.
A written daily medication chart.
A calendar for weekly or less frequent medicines.
A medicine diary to record doses and any problems.
A pharmacy-prepared medication organiser, where suitable.

Linking medicines to regular daily activities can help, but always follow the instructions for the individual medicine. Some antifungal formulations have specific requirements concerning food, stomach acidity or other medicines.

Important: Do not transfer medicines into a pill organiser without checking with your pharmacist. Some need to remain in their original packaging because of stability, moisture protection or other handling requirements.

3. Check instructions carefully when starting an antifungal

Antifungal medicines are not all taken in the same way.

For example, different formulations of itraconazole have different food and absorption requirements. Other antifungals may have important interactions with medicines that affect stomach acidity.

When starting or changing treatment, ask your pharmacist:

Should I take this medicine with food or on an empty stomach?
Are there foods, supplements or other medicines I should avoid?
What should I do if I forget a dose?
What side effects should I report promptly?
Will I need blood tests or antifungal drug-level monitoring?

Do not assume that instructions for one antifungal apply to another, or even to a different formulation of the same drug.

4. Be especially careful about drug interactions

Azole antifungals, including itraconazole, voriconazole, posaconazole and isavuconazole, can interact with a wide range of other medicines.

Interactions may increase the risk of side effects, reduce the effectiveness of treatment or alter the amount of a medicine in your bloodstream.

Particularly important examples include some inhaled corticosteroids, certain cholesterol-lowering medicines, heart medicines and treatments that affect blood clotting.

Before starting any new medicine, including something bought from a pharmacy, tell the prescriber or pharmacist which antifungal you are taking.

This also applies when a medicine is stopped or its dose is changed.

Read more in our guide to antifungal drug interactions.

5. Never change corticosteroid treatment without advice

Some people with ABPA require oral corticosteroids, such as prednisolone or an alternative, to control inflammation. Others use inhaled corticosteroids for asthma or related conditions.

Long-term or repeated corticosteroid treatment can suppress the body's normal production of cortisol. This is known as adrenal suppression and can sometimes lead to adrenal insufficiency.

Stopping or reducing corticosteroids too quickly can be dangerous, particularly when adrenal function has been suppressed.

If you are taking long-term steroids:

Follow your prescribed dose and reduction schedule.
Do not stop treatment suddenly unless your clinical team specifically instructs you to do so.
Ask whether you need a steroid emergency card.
Understand what to do if you become acutely unwell, vomit or cannot keep medicines down.
Check whether you need an individualised sick-day or emergency steroid plan.

Important: People with known adrenal insufficiency may require additional steroid treatment during illness or other significant physical stress. Follow your own endocrine team's emergency instructions. Suspected adrenal crisis is a medical emergency.

6. Keep track of blood tests and monitoring

Some antifungal treatments require regular monitoring to check safety and ensure that the medicine is reaching an appropriate concentration in the body.

Depending on the treatment, monitoring may include:

Liver function tests.
Kidney function and electrolyte tests.
Antifungal drug levels (therapeutic drug monitoring).
Other tests related to the particular medicine or your health conditions.

Ask your specialist team which tests you need, how often they should be performed and who will review the results.

It can be helpful to record the dates of blood tests and follow-up appointments in your calendar.

If an expected result or appointment has not been communicated, contact the responsible clinical team rather than assuming everything is normal.

For more information, see antifungal medicines: dosing, monitoring and specialist care.

7. Recognise and report side effects

Many medicines have side effects, but not every new symptom is necessarily caused by treatment.

Commonly reported problems during antifungal treatment can include nausea, abdominal discomfort, changes in taste, headaches or skin reactions. The pattern varies between medicines.

Some adverse effects can be serious, including liver injury, significant drug interactions, heart rhythm problems or severe allergic reactions.

Contact your clinical team if you develop new or worsening symptoms that might be related to your medicines. Seek urgent medical advice for concerning symptoms such as jaundice, severe or persistent vomiting, fainting or a significant new rash. Severe breathing difficulty, collapse or swelling of the tongue or throat requires emergency assistance.

Do not simply tolerate troublesome side effects for weeks without discussing them. Your team may be able to adjust treatment, investigate another cause or consider an alternative medicine.

Equally, do not stop essential treatment on your own unless you have been instructed to do so or are following emergency advice for a suspected serious reaction.

8. What if you miss a dose?

Missing an occasional dose can happen, especially when you are unwell or your routine changes.

The correct response depends on the medicine, formulation and how long ago the dose was due.

Do not automatically take a double dose to make up for a missed one.

Check the patient information leaflet or ask your pharmacist or prescribing team for medicine-specific instructions.

If you repeatedly miss doses, explain this to your healthcare team. A simpler schedule, reminders or additional support may help.

9. Prepare for hospital admissions and changes in treatment

Medication errors can occur when care moves between hospital, GP services and specialist clinics.

Take your current medication list to appointments and hospital admissions, together with information about allergies, steroid dependency and any specialist treatment plans.

When leaving hospital, check:

Which medicines have changed?
Which medicines should be stopped?
Have any doses been altered?
Who will prescribe ongoing supplies?
Who is responsible for blood tests and follow-up?

Ask for clarification if the discharge medication list differs from your usual prescription.

It is particularly important that changes involving antifungals, corticosteroids and medicines with significant interactions are communicated clearly between teams.

10. Ask for help if managing medicines becomes difficult

Fatigue, breathlessness, poor concentration, visual difficulties or problems with hand movement can make medication management more demanding.

You do not have to manage everything without support.

Community pharmacists can advise on reminder systems, accessible packaging, medicine reviews and suitable aids. Family members or carers may also help, with your agreement.

If you take several medicines, ask whether a structured medication review would be appropriate.

Read our guide to aspergillosis medicines for carers.

Questions to ask at your next appointment

Do I still need every medicine on my list?
Are there any important interactions between my treatments?
Am I taking each medicine at the correct time and in the correct way?
What monitoring do I need, and who checks the results?
Which side effects should prompt me to contact the team?
What should I do if I miss a dose or cannot take my medicines?
Who should I contact if I have a medication problem between appointments?

Key points

Keep an accurate, up-to-date list of everything you take.
Follow medicine-specific instructions, especially for antifungals.
Check for interactions whenever medicines are started, stopped or changed.
Never change long-term corticosteroids independently without an appropriate clinical plan.
Keep track of monitoring and follow up missing results.
Report side effects rather than struggling with them in silence.
Ask for practical support when managing medicines becomes difficult.

Managing aspergillosis treatment safely is a shared responsibility between patients, pharmacists, GPs and specialist teams. Good communication and a few reliable routines can make long-term treatment easier and safer.

This article provides general patient information and does not replace individual advice from your prescribing clinician or pharmacist.

by GAtherton

Chart showing quality-of-life concerns reported by 104 people with allergic bronchopulmonary aspergillosis (ABPA) in a 2021 patient-community survey.

What Worries People with ABPA Most? 104 Patients Tell Us

Living with ABPA: What matters most to patients?

Allergic bronchopulmonary aspergillosis (ABPA) is a complex lung condition that can affect much more than breathing. People living with ABPA may experience persistent tiredness, coughing, breathlessness and difficulty maintaining their usual activities. Treatments can also create challenges of their own.

But which of these problems concern patients the most?

In October 2021, members of an online aspergillosis patient community were invited to share the aspects of their quality of life that they most wanted to improve. A total of 104 people with ABPA responded.

Their answers provide a useful insight into the everyday challenges of living with ABPA and why understanding patients' priorities matters alongside clinical measurements and treatment decisions.

What did patients tell us?

The three most frequently reported concerns were:

Fatigue: feeling exhausted or lacking the energy needed for everyday activities.
Breathlessness: difficulty breathing during physical activity or sometimes even during ordinary daily tasks.
Coughing: a persistent or troublesome cough that can interfere with sleep, conversation and social activities.

Some respondents selected as many as 16 different concerns, illustrating how ABPA can affect several aspects of life simultaneously.

The original survey chart is reproduced below to preserve the patient-reported findings.

Fatigue: More than simply feeling tired

Fatigue can be one of the most difficult symptoms of a long-term respiratory condition to explain to other people. It may involve physical exhaustion, difficulty concentrating and needing longer periods of recovery after activities that previously seemed straightforward.

In people with ABPA, fatigue may have several contributing factors, including ongoing respiratory symptoms, disturbed sleep, inflammation, other medical conditions and the effects of treatment.

Patients may find it helpful to discuss persistent fatigue with their clinical team rather than assuming that it is an unavoidable part of their condition. Some contributing problems may be treatable.

Breathlessness and loss of confidence

Breathlessness can make ordinary activities increasingly demanding. Walking, climbing stairs, shopping or doing housework may require more effort and more frequent rests.

It can also affect confidence. Some people begin avoiding activities because they worry about becoming breathless, which may contribute to physical deconditioning over time.

Appropriate treatment of the underlying lung disease is important, but patients may also benefit from individually tailored exercise, breathing techniques, pacing and pulmonary rehabilitation.

Read our guide to breathlessness and exercise with aspergillosis.

Living with a persistent cough

Coughing is another important concern for people with ABPA. It may be associated with airway inflammation, mucus production, asthma or coexisting bronchiectasis.

A persistent cough can be exhausting, disrupt sleep and make people uncomfortable in public or social situations.

Patients should tell their clinical team if their cough changes significantly, becomes more troublesome or is accompanied by new symptoms. Changes may require assessment rather than simply being attributed to established ABPA.

Airway clearance techniques may help some people who have difficulty clearing mucus, particularly those with bronchiectasis. These should be discussed with an appropriately trained respiratory physiotherapist.

Many problems can occur together

One striking feature of the survey was that some participants reported numerous concerns rather than one dominant symptom.

This reflects an important aspect of living with a chronic respiratory condition: symptoms can interact.

For example, coughing may disturb sleep, poor sleep may worsen fatigue, and fatigue may make physical activity more difficult. Reduced activity can then contribute to loss of fitness and greater breathlessness.

Recognising these connections may help patients and clinicians identify practical improvements even when the underlying lung condition cannot be completely resolved.

Why patient priorities matter

Clinical teams monitor ABPA using several measures, which may include symptoms, lung function, blood tests and chest imaging. These are important for assessing disease activity and treatment response.

However, improvements in clinical measurements do not always mean that a patient feels substantially better in everyday life.

Someone may have improved blood results but still struggle with fatigue, disrupted sleep or limited physical activity.

Asking patients what they most want to improve can help clinical teams focus on outcomes that are meaningful to them.

Patients may find it useful to prepare for appointments by identifying their two or three biggest difficulties and explaining how these affect everyday life.

What are the limitations of this survey?

This was an informal online patient-community poll conducted in October 2021, involving 104 respondents who identified as having ABPA.

Participation was voluntary, and respondents were drawn from an online support community. People experiencing more severe symptoms or particular concerns may have been more likely to participate.

Consequently, the findings should not be interpreted as showing how common individual symptoms are among all people with ABPA.

The survey was not designed to establish causes of symptoms, assess treatments or compare different patient populations.

Nevertheless, it provides a valuable record of the concerns that these patients chose to highlight.

What can we learn from patients' experiences?

The message from this survey is straightforward: people living with ABPA are concerned not only about controlling their disease but also about maintaining their energy, breathing comfortably and managing everyday activities.

Fatigue, breathlessness and coughing deserve attention because they can substantially affect quality of life, even when they are not the primary measures used to assess treatment response.

Listening to patients' priorities is an important part of delivering effective, compassionate respiratory care.

Further information and support

Patient Voices preserves the experiences and priorities shared by members of our aspergillosis community. These accounts complement, but do not replace, clinical research and individual medical advice.

by GAtherton

Woman discussing her worries with a supportive healthcare professional.

Anxiety and Aspergillosis: Understanding the Impact on Mental Health

Living with aspergillosis can affect much more than your lungs. Anxiety, uncertainty, low mood, frustration and exhaustion are common experiences for people living with long-term health conditions. These feelings can affect everyday life, relationships, sleep and confidence.

It is important to understand that anxiety is not a sign of weakness, and it does not mean your physical symptoms are imaginary. Learning to recognise and manage anxiety can make living with aspergillosis easier, even when the underlying lung condition remains unchanged.

Why can aspergillosis cause anxiety?

People living with aspergillosis may experience anxiety for many reasons, including:

Breathlessness, coughing and unpredictable symptoms.
Worries about infections, flare-ups or disease progression.
Waiting for test results, scans or medical appointments.
Concerns about medication side effects and treatment decisions.
Changes to employment, independence or family responsibilities.
Feeling that other people do not understand the condition.
Uncertainty about what the future may hold.

Sometimes anxiety has an obvious cause. At other times, it develops gradually and becomes part of everyday life without us recognising it.

How anxiety and physical symptoms interact

Anxiety activates the body's stress response. Breathing may become faster, muscles tense, the heart beats more quickly and our attention becomes focused on possible threats.

For someone who already has a respiratory condition, these changes can make breathlessness feel more frightening or difficult to manage. Breathlessness can then increase anxiety, creating a cycle in which each makes the other harder to cope with.

Importantly, anxiety does not mean that breathlessness or other symptoms are psychological. New or worsening respiratory symptoms still need appropriate medical assessment. They should never automatically be attributed to anxiety.

Can stress make allergies worse?

Stress and allergic disease can influence one another. Research suggests that psychological stress may affect immune signalling and the activity of cells involved in allergic inflammation, including mast cells.

However, this does not mean anxiety causes an Aspergillus allergy or that relaxation can replace treatment for allergic bronchopulmonary aspergillosis (ABPA).

Reducing stress may help some people manage their symptoms and their response to them, but allergic inflammation still requires appropriate medical treatment.

Recognising anxiety

Anxiety does not always feel like worry. It may appear as:

Difficulty relaxing or sleeping.
Feeling constantly alert or expecting something to go wrong.
Repeatedly checking symptoms or searching for reassurance.
Difficulty concentrating or making decisions.
Muscle tension, restlessness or irritability.
Avoiding activities or appointments because of fear.
Feeling overwhelmed by relatively small problems.

Some of these experiences can also have physical or medication-related causes. Discuss persistent or changing symptoms with your healthcare team rather than assuming anxiety is responsible.

Practical ways to manage anxiety

1. Recognise what triggers it

Notice whether anxiety increases before appointments, during changes in symptoms, when starting medication or after reading health information online. Understanding patterns can help you prepare for difficult situations.

2. Try gentle relaxation techniques

Muscle relaxation, mindfulness, grounding exercises and gentle breathing techniques may help reduce tension.

If you have significant breathlessness, avoid forcing deep breaths or following breathing exercises that make you uncomfortable. Ask your respiratory physiotherapist about techniques appropriate for your lung condition.

3. Prepare for medical appointments

Writing down your questions, symptoms and concerns beforehand can reduce uncertainty. Taking someone with you or asking for written information may also help.

4. Maintain manageable activities

Gentle exercise, social contact, hobbies and regular routines can support mental wellbeing. Adapt activities to your physical abilities rather than pushing through severe symptoms.

5. Talk to other people

Sharing experiences with family, friends or people who understand aspergillosis can reduce isolation. Peer support can be particularly valuable when living with an uncommon condition.

6. Seek professional support

Cognitive behavioural therapy (CBT) and other psychological therapies can help people manage anxiety, health-related fears and depression. Seeking support does not mean that your physical illness is being dismissed.

Depression and living with chronic illness

Low mood is understandable during difficult periods, but persistent depression deserves attention in its own right.

Warning signs can include losing interest in enjoyable activities, feeling hopeless, withdrawing from other people or struggling with everyday tasks.

Fatigue, poor sleep and difficulty concentrating can arise from aspergillosis, medication effects or depression, sometimes in combination. Your GP or healthcare team can help assess what is contributing.

Where to find support

Asthma + Lung UK: Your lung condition and anxiety — information specifically for people with respiratory conditions.
NHS: Health anxiety — understanding health-related worries and ways to manage them.
NHS Talking Therapies — finding psychological therapy services in England. Adults can generally refer themselves without first seeing a GP.
Harvard Health: Is stress making your allergy symptoms worse? — background reading on the relationship between stress and allergies.
Aspergillosis support and community — opportunities to connect with others living with aspergillosis.

Relaxation and wellbeing resources

These resources may provide additional ideas for managing stress and anxiety:

Some older downloadable resources may contain dated information. Use current NHS guidance when seeking healthcare or psychological support.

When to seek help

Speak to your GP or healthcare team if anxiety or low mood is interfering with sleep, relationships, treatment or everyday activities, or if you feel unable to cope.

Seek urgent medical assessment for new or severe breathlessness, chest pain, significant bleeding or other potentially serious physical symptoms. Do not assume these are caused by anxiety.

If you need urgent mental health support in England, contact NHS 111 and select the mental health option. If someone is in immediate danger, call 999.

A final thought

Living with aspergillosis can be difficult and unpredictable. We cannot always control our symptoms, treatment outcomes or circumstances, but we can develop ways to manage the uncertainty surrounding them.

Reducing anxiety will not cure aspergillosis. It can, however, make a meaningful difference to confidence, wellbeing and quality of life.

by GAtherton

GAtherton

Why are NHS medical records still separate?

What information can NHS staff already share?

1. Summary Care Record

2. Regional Shared Care Records

3. Hospital electronic patient records

What is the NHS Single Patient Record?

When will the Single Patient Record be available?

Will patients be able to see their own records?

Will my information be kept secure?

What does this mean for people with aspergillosis?

What can patients do now?

Will patients eventually stop repeating their medical history?

Key points

Further information

Key points

What does lung elasticity actually mean?

Four ways lung mechanics can differ

How do healthy lungs change with age?

How does aspergillosis affect lung elasticity?

Allergic bronchopulmonary aspergillosis (ABPA)

Chronic pulmonary aspergillosis (CPA)

Aspergilloma

Bronchiectasis

Does becoming more breathless mean aspergillosis is progressing?

Can lung function tests distinguish ageing from lung disease?

Can exercise improve lung elasticity?

Can treatment improve lung function?

What should patients take away from this?

Further information

Key points

Why might someone with aspergillosis wear a mask?

Five reasons for wearing a mask: what does the evidence say?

1. Reducing exposure to fungal spores

2. Reducing exposure to respiratory viruses

3. Reducing the spread of infection to other people

4. Reducing allergic triggers in ABPA

5. Reducing exposure to azole-resistant Aspergillus spores

Which situations justify extra precautions?

Which type of mask?

Why do my glasses fog up?

What about exhalation valves?

What if a respirator makes breathing difficult?

What masks cannot do

Making a decision that fits your circumstances

Can I Sit in My Garden or Go for a Walk Without a Mask?

Practical Tips: Using and Looking After Your Respirator

Put your respirator on before exposure

Keep a spare available

Look after reusable respirators

Further reading

What is a lung cavity?

Why do lung cavities develop in aspergillosis?

Chronic pulmonary aspergillosis (CPA)

Aspergilloma (fungal ball)

Invasive pulmonary aspergillosis

Allergic bronchopulmonary aspergillosis (ABPA)

Other causes of lung cavities

Can lung cavities actually heal?

What happens to cavities during treatment for CPA?

Does a cavity remaining mean the Aspergillus infection is still active?

How do doctors monitor lung cavities?

CT scans

Blood tests

Sputum testing

Symptoms and quality of life

Can damaged lung tissue grow back?

What can patients do to protect their remaining lung function?

Follow your agreed treatment plan

Manage other respiratory conditions

Stay as physically active as your condition allows

Seek help with airway clearance when needed

Protect your general health

What if a cavity continues to grow?

What about the risk of bleeding?

Questions to ask your specialist

Key points: Can lung cavities heal?

The most important message

1. Could a urine test make invasive aspergillosis easier to diagnose?

2. Isavuconazole may offer an alternative for people with chronic pulmonary aspergillosis