How Damp Is Your Home? Take Part in a European Research Survey
European researchers are inviting members of the public to help investigate how common damp and mould are in homes across Europe.
Damp and mould are important environmental health concerns, particularly for people living with asthma, allergies and other respiratory conditions. However, researchers still lack comprehensive information about how widespread these problems are across European households.
A citizen science survey, conducted under the auspices of the European Confederation of Medical Mycology (ECMM) Excellence Centre network, aims to improve understanding of the situation.
The survey is open to people living in Europe and takes only a few minutes to complete.
About the survey
- Participation is anonymous.
- Responses will be used for research purposes only.
- The questionnaire is available in English, Spanish, German, French and Italian.
- Researchers are approaching 1,000 responses but would particularly welcome contributions from underrepresented countries.
Why participate?
Better information about damp and mould in European homes could help researchers understand patterns of exposure and inform future research into environmental and respiratory health.
You do not need to have aspergillosis or another respiratory condition to participate.
Take part in the European Damp Home Survey
Please consider sharing the survey with friends, family, colleagues and neighbours.
This is an independent European research survey being shared by the National Aspergillosis Centre to support participation. Completing the questionnaire does not diagnose mould-related illness or aspergillosis.
Living With Aspergillosis: What Patients Wish They Had Known Earlier
NAC Thursday Sessions | 15 October 2026
What have you learned about living with aspergillosis that nobody told you when you were first diagnosed?
That question prompted a wide-ranging conversation during this week's NAC Thursday Session. Patients discussed the difficulties of understanding a diagnosis, learning from one another, managing several health conditions and finding reliable information.
The discussion also raised an important question: are we reaching everyone who could benefit from patient support, particularly people who are still working?
When a Diagnosis Is Just a Word
Several participants remembered being told they had aspergillosis, or that they were allergic to Aspergillus, without receiving much explanation of what this meant.
For some, the diagnosis initially meant little more than an unfamiliar medical term. Others had experienced respiratory symptoms for years before receiving an explanation they could understand.
The discussion highlighted an important distinction: receiving a diagnosis is not necessarily the same as understanding it.
Patients may need time, repeated explanations and opportunities to ask questions before they can make sense of what their condition means for everyday life.
Learning From Other Patients
Much of the conversation concerned the practical knowledge participants had gained through the Thursday Sessions and other patient support activities.
Experienced patients had helped others understand environmental exposure, gardening, household activities, medication experiences and the different ways aspergillosis can affect people.
Participants remembered learning about situations involving higher concentrations of fungal spores, such as handling compost, and discussing precautions appropriate to their circumstances.
However, an equally important lesson was that aspergillosis does not affect everyone in the same way.
Some people can continue gardening with suitable precautions, while others need to avoid particular activities. Treatment responses, symptoms and underlying medical conditions vary considerably.
Patient experiences can help people identify questions worth asking, but they should not replace advice from their own clinical team.
Understanding Can Reduce Fear
Several participants felt that learning about their illness had changed their relationship with it.
Understanding why tests were performed, what treatments were intended to achieve and which symptoms might require attention helped some people feel less overwhelmed.
Knowledge also made conversations with healthcare professionals easier.
Instead of simply accepting unfamiliar terminology, patients felt better able to ask why an investigation was needed, discuss possible treatment effects or explain changes in their health.
Learning did not mean knowing everything. It meant becoming more confident about asking questions and recognising when further explanation was needed.
Living With More Than One Medical Condition
Another theme was the difficulty of managing aspergillosis alongside other health problems.
Participants described experiences involving asthma, bronchiectasis, medication side effects, fatigue and other conditions requiring specialist care.
When several problems occur together, it may be difficult to know which condition is responsible for a particular symptom.
These experiences illustrate why coordinated care matters. Symptoms and treatment decisions need to be considered in the context of the whole person, rather than treating each diagnosis in isolation.
Work, Energy and Everyday Life
The discussion moved beyond medical treatment to the adjustments people make in everyday life.
Some participants described reducing or giving up employment because of fatigue and other health problems. Others spoke about balancing appointments, treatment and ordinary responsibilities.
One important observation emerged: people who are still working may be less likely to attend daytime Thursday Sessions.
Regular participants often include people who have retired or are no longer working. Their experiences may not fully reflect the needs of younger patients or those managing employment alongside illness.
The group discussed whether an early-evening meeting might make participation easier for working patients.
There are practical difficulties, including fatigue later in the day and differences in time zones, but the idea deserves further exploration.
No new meeting time was agreed. Nevertheless, the conversation highlighted the importance of finding out what arrangements might suit people who cannot currently attend.
Support Matters for Carers Too
One participant recalled attending earlier face-to-face patient meetings with their partner.
Both had benefited from learning more about aspergillosis. The carer gained a better understanding of the illness, its treatment and the challenges involved in everyday activities.
Family members and partners often help with appointments, medication, household activities and emotional support. They may also have questions of their own.
Patient education can therefore benefit the whole household, not just the person receiving treatment.
Making Online Information Easier to Use
During the meeting, a participant explained that they were having difficulty reading information on aspergillosis.org because the text appeared too small.
Others discussed how reading difficulties, unfamiliar technology and complicated login procedures can discourage people from using online resources.
Increasing paragraph text size was identified as a practical website improvement to investigate.
The conversation also turned to the new online discussion community, where patients can ask questions and read longer explanations.
Some participants were interested but had not yet joined because registration appeared complicated or they were unsure whether they would need to log in repeatedly.
This was useful feedback: providing information is only part of the job. People must also be able to find it, read it and use it without unnecessary difficulty.
Can AI Help Patients Learn?
The group also discussed artificial intelligence as an educational tool.
One potential advantage was the ability to ask follow-up questions and explore an unfamiliar subject through a conversation, rather than simply reading a fixed explanation.
Participants also raised concerns about reliability. An AI-generated answer may sound convincing even when it is incomplete or incorrect.
For medical questions, information from AI should be checked against reliable clinical sources and discussed with an appropriate healthcare professional when decisions about care are involved.
The discussion returned to something AI cannot fully reproduce: the personal experience of another patient who understands what living with a long-term illness can feel like.
Why Small-Group Conversations Remain Valuable
Participants reflected on the long history of the NAC Thursday Sessions and how patient support has evolved from face-to-face gatherings to online discussions.
Smaller groups can make it easier for people to speak, ask questions and share experiences without feeling overwhelmed.
Attendance varies from week to week. Some people join regularly, while others attend when a particular topic matters to them.
Recorded educational presentations also allow people to learn when they cannot attend live, although recordings do not offer the same opportunity for discussion.
Both approaches have value: accessible educational resources and opportunities for genuine two-way conversation.
What We Learned From This Thursday Session
Three practical priorities emerged:
- Improve readability: review paragraph text sizes and make information on aspergillosis.org easier to read.
- Make participation easier: provide clearer guidance for joining the online discussion community.
- Reach working patients: explore whether alternative meeting times could help people who cannot attend during the day.
These are ideas arising from patient feedback, rather than completed changes. We will consider how best to take them forward.
Join Our Thursday Sessions
The NAC Thursday Sessions take place every Thursday at 10 am UK time.
These informal online conversations give people affected by aspergillosis an opportunity to share experiences, ask questions and learn from one another.
New participants are welcome, including those who simply prefer to listen.
Visit aspergillosis.org for information about patient support, regular meetings and our online discussion community.
This article summarises themes from an informal NAC Thursday Session held on 15 October 2026. Personal experiences have been anonymised and edited for clarity. They should not be interpreted as individual medical advice or formal clinical recommendations.
How Doctors Diagnose Aspergillus Lung Infections
How doctors work out whether Aspergillus is truly causing infection
Key points
- This page is about Aspergillus infection diagnostics, not allergic conditions such as allergic bronchopulmonary aspergillosis (ABPA), severe asthma with fungal sensitisation (SAFS), or simple fungal allergy.
- Doctors usually diagnose Aspergillus infection using a combination of symptoms, scans, laboratory tests, and clinical judgement.
- No single test is perfect. Results need to be interpreted in context.
- Important tests include computed tomography (CT) scans, sputum or bronchoscopy samples, fungal culture, polymerase chain reaction (PCR), antigen tests, and Aspergillus immunoglobulin G (IgG).
- Newer approaches increasingly try to detect parts of the fungus itself, such as fungal DNA or fungal cell wall molecules, rather than only measuring the body’s immune response.
- These newer approaches may help make diagnosis faster, earlier, and more accurate.
Who is this page for? Patients, carers, general practitioners, and non-specialists who want to understand how Aspergillus infections are diagnosed.
Please note: This article explains diagnosis of infection. Tests used mainly for allergic disease are important too, but are best covered separately because the questions doctors are asking are different.
Why diagnosis matters
Aspergillus is a group of common moulds found widely in the environment. We all breathe in tiny Aspergillus spores regularly. In most people, this causes no problem. In some people, however, Aspergillus can grow in the lungs or in existing lung cavities and cause infection.
Getting the diagnosis right matters because treatment decisions depend on it. Antifungal medicines can be very important, but they can also have side effects, interact with other medicines, and may not be needed if Aspergillus is only present in a harmless or less harmful way. Doctors therefore try to answer a very specific question: is Aspergillus really causing disease here, or is it simply present?
Infection is not the same as allergy
This page is specifically about diagnosing Aspergillus infection in the lungs.
That is different from diagnosing allergic disease caused by Aspergillus, where the main problem is an over-active immune response rather than fungal growth causing tissue damage. Allergic conditions include allergic bronchopulmonary aspergillosis (ABPA) and severe asthma with fungal sensitisation (SAFS).
In infection, doctors are looking for evidence that Aspergillus is actually growing, persisting, or damaging tissue. This may include conditions such as:
- chronic pulmonary aspergillosis (CPA)
- aspergilloma (a fungal ball)
- Aspergillus nodules
- subacute invasive aspergillosis
- some other chronic or invasive forms of Aspergillus lung infection
The tests sometimes overlap, but the emphasis is different. That is why it makes sense to keep infection diagnostics and immune or allergy diagnostics in separate articles.
Why diagnosing Aspergillus infection can be difficult
Diagnosing Aspergillus infection is rarely as simple as doing one test and getting a definite yes-or-no answer.
There are several reasons for this:
- Aspergillus is common in the environment, so finding it in a sample does not always mean it is causing illness.
- Symptoms such as cough, tiredness, weight loss, sputum production, breathlessness, and coughing up blood are not specific to aspergillosis.
- Lung changes seen on scans, such as cavities or nodules, can have many possible causes, including prior tuberculosis, non-tuberculous mycobacterial disease, bacterial infection, inflammatory disease, or cancer.
- Some tests detect the body’s immune response, but immune responses vary greatly between patients.
- Some patients are immunosuppressed, which means they may not generate the “expected” test result even when infection is present.
Because of all this, diagnosis usually depends on weighing several pieces of evidence together.
How doctors put the picture together
Doctors usually build the diagnosis from four broad types of information:
1. Symptoms and history
They ask what symptoms are present, how long they have been there, whether they are getting worse, and whether the patient has underlying lung disease or risk factors such as a weakened immune system.
2. Imaging
A computed tomography (CT) scan gives detailed pictures of the lungs and is often central to diagnosis.
3. Lung samples
Sputum, bronchoscopy samples, or sometimes tissue samples may be tested to look for Aspergillus directly.
4. Blood tests
These may look for antibodies, fungal markers, or other evidence supporting infection.
The more these different pieces line up, the more confident the diagnosis becomes.
Computed tomography (CT) scans
A computed tomography (CT) scan is one of the most important tools in diagnosing Aspergillus infection. It shows far more detail than a standard chest X-ray and can reveal patterns that raise suspicion of specific forms of aspergillosis.
A CT scan may show:
- lung cavities
- a fungal ball within a cavity
- nodules
- areas of scarring
- thickened airway walls
- bronchiectasis
- features suggesting chronic inflammation or progressive damage
A scan is extremely useful, but it cannot by itself prove that Aspergillus is the cause. A cavity, for example, may have been caused by another disease and then secondarily colonised by Aspergillus. That is why the scan has to be interpreted alongside the rest of the evidence.
Samples from the lungs
Whenever possible, doctors prefer to test material coming from the lungs themselves.
This may include:
- sputum coughed up by the patient
- bronchoalveolar lavage (BAL) fluid collected during bronchoscopy
- occasionally a tissue biopsy
A bronchoscopy involves passing a thin flexible camera into the airways. This allows doctors to look inside the bronchial tree and to wash a small area with sterile fluid, which is then collected for testing. These samples may give clearer information than blood tests alone because they come from the site where infection may be happening.
Fungal culture
Fungal culture means trying to grow Aspergillus from sputum, BAL fluid, or another sample in the laboratory.
This can be helpful because it may:
- show that live fungus is present
- identify the Aspergillus species
- allow antifungal susceptibility testing to look for resistance
However, culture also has important weaknesses. Aspergillus can be hard to grow, and culture may be negative even when infection is genuinely present. So a negative culture does not rule out disease.
Polymerase chain reaction (PCR) testing
Polymerase chain reaction (PCR) looks for Aspergillus genetic material. Instead of trying to grow the fungus, it asks whether fungal DNA is present in the sample.
PCR can often be faster and more sensitive than culture. It may detect Aspergillus when culture is negative.
But PCR has its own limitations:
- it may detect very small amounts of fungal DNA
- it may detect dead fungal material rather than active growth
- it does not always clearly distinguish colonisation from infection
So PCR is a very useful tool, but it still needs clinical interpretation.
Antigen tests
Antigen tests look for molecules that come from the fungus itself. This is an important step toward more direct diagnosis.
One of the best-known examples is galactomannan, a component of the Aspergillus cell wall. Galactomannan can sometimes be measured in:
- bronchoalveolar lavage (BAL) fluid
- blood, especially in certain invasive settings
Another test, beta-D-glucan, measures a fungal cell wall component found in many fungi. This means it is less specific for Aspergillus, but it can still provide supportive evidence in the right setting.
These tests matter because they aim to detect fungal material rather than waiting for visible growth in the lab.
Blood tests
In chronic forms of aspergillosis, one of the most useful blood tests is Aspergillus immunoglobulin G (IgG).
This test does not detect the fungus directly. Instead, it measures part of the body’s longer-term immune response to Aspergillus. In a patient with the right symptoms and CT scan findings, a raised Aspergillus IgG can strongly support a diagnosis of chronic pulmonary aspergillosis (CPA).
However, blood antibody tests are not perfect:
- some people produce stronger responses than others
- some immunosuppressed patients may not produce much antibody at all
- a positive result still needs to be interpreted with scans and other findings
So Aspergillus IgG is often very helpful, but it is usually one part of the diagnostic puzzle rather than a standalone answer.
Why try to detect the fungus itself?
This is one of the most important ideas in newer fungal diagnostics.
Many traditional tests look at how the immune system responds to Aspergillus. That can be useful, but it has limitations. Different people respond differently. Some patients mount a strong immune response. Others mount a weak one. Some are too immunosuppressed to produce a strong signal at all.
For that reason, newer tests increasingly try to detect:
- fungal DNA
- fungal cell wall components
- molecules released during fungal growth
- in the future, possibly chemicals in the breath linked to fungal metabolism
These approaches may be closer to direct evidence that the fungus is really present and active.
A simple analogy
Imagine you are trying to work out whether someone has broken into a house.
An immune-response test is a bit like asking the neighbours whether they heard something suspicious. Their answer may help, but it depends on whether they were awake, paying attention, and interpreting the sound correctly.
A direct fungal test is more like finding muddy footprints, fingerprints, or a dropped tool inside the house. It is more direct evidence that the intruder was really there.
In the same way, detecting Aspergillus DNA or fungal cell wall molecules can sometimes tell us more directly that Aspergillus is present than measuring the body’s response alone.
Emerging and future diagnostic tests
Research in fungal diagnostics is moving quite quickly. Several newer approaches are especially promising.
Rapid molecular platforms
These aim to detect fungal DNA more quickly and consistently, sometimes within hours rather than days.
Lateral flow tests
These are simple rapid tests designed to detect fungal molecules in a way that may eventually be practical at or near the point of care.
Next-generation sequencing
This technique can look for genetic material from many organisms at once. In future, it may help make sense of complex infections where Aspergillus is only one part of the picture.
Breath-based tests
Researchers are exploring whether Aspergillus produces distinctive chemicals that can be detected in the breath. If reliable, this could one day provide a much less invasive way to help screen for infection.
Faster resistance detection
As antifungal resistance becomes more important, there is growing interest in tests that can identify resistance markers directly from patient samples rather than waiting for full culture results.
Why several tests are often needed
No single test answers every question.
A CT scan may suggest aspergillosis, but it cannot prove Aspergillus is the cause. A sputum sample may show Aspergillus, but not prove it is causing damage. A blood test may support chronic infection, but not show where the fungus is or whether it is active now.
Doctors therefore usually ask:
- Do the symptoms fit?
- Does the CT scan fit?
- Is Aspergillus detectable in lung samples?
- Do the blood tests support infection?
- Are there better alternative explanations?
Diagnosis is strongest when several lines of evidence point in the same direction.
Common questions patients ask
If Aspergillus is found in my sputum, does that mean I definitely have an infection?
No. Because Aspergillus is common in the environment, it may appear in sputum without being the main cause of illness. Doctors usually need scan findings and other tests as well.
Why can diagnosis take so long?
Some fungal tests take time, especially culture. Also, doctors often need to fit together symptoms, scans, repeat samples, and blood tests before they can be confident.
Why do I need a CT scan if my sputum already showed Aspergillus?
The CT scan helps show whether there is a pattern of lung damage that fits aspergillosis. It helps distinguish simple presence from disease.
Why might I need a bronchoscopy?
A bronchoscopy can obtain better samples directly from the lungs, especially if sputum tests are unclear or if the diagnosis remains uncertain.
Why are newer direct tests so important?
Because they may detect the fungus more directly and more quickly. That could mean earlier diagnosis, more confidence, and better-targeted treatment.
When to seek medical advice
Seek medical advice if you have symptoms such as:
- persistent cough
- worsening breathlessness
- coughing up blood
- unexplained weight loss
- ongoing tiredness with worsening lung symptoms
- recurrent chest infections
- a new cavity, nodule, or unexplained abnormality on lung imaging
This is particularly important if you already have bronchiectasis, chronic obstructive pulmonary disease (COPD), previous tuberculosis, sarcoidosis, or an immune problem.
References
- Denning DW, Cadranel J, Beigelman-Aubry C, Ader F, Chakrabarti A, Blot S, Ullmann AJ, Dimopoulos G, Lange C; European Society for Clinical Microbiology and Infectious Diseases and European Respiratory Society. Chronic pulmonary aspergillosis: rationale and clinical guidelines for diagnosis and management. Eur Respir J. 2016 Jan;47(1):45-68. doi: 10.1183/13993003.00583-2015. PMID: 26699723.
- Patterson TF, Thompson GR 3rd, Denning DW, Fishman JA, Hadley S, Herbrecht R, Kontoyiannis DP, Marr KA, Morrison VA, Nguyen MH, Segal BH, Steinbach WJ, Stevens DA, Walsh TJ, Wingard JR, Young JA, Bennett JE. Practice Guidelines for the Diagnosis and Management of Aspergillosis: 2016 Update by the Infectious Diseases Society of America. Clin Infect Dis. 2016 Aug 15;63(4):e1-e60. doi: 10.1093/cid/ciw326. Epub 2016 Jun 29. PMID: 27365388; PMCID: PMC4967602.
- Kosmidis C, Denning DW. The clinical spectrum of pulmonary aspergillosis. Thorax. 2015 Mar;70(3):270-7. doi: 10.1136/thoraxjnl-2014-206291. Epub 2014 Oct 29. PMID: 25354514.
🌍 World Aspergillosis Day 2026
World Aspergillosis Day 2026 took place on 3 February 2026, bringing together patients, researchers and healthcare professionals to share developments in aspergillosis research, diagnosis, treatment and patient care.
This page preserves the original programme and provides access to recordings of the presentations.
Watch the Presentations
Recordings from World Aspergillosis Day 2026, held on 3 February 2026, are now available to watch.
Watch the World Aspergillosis Day 2026 presentations on YouTube →
📅 NAC World Aspergillosis Day Meeting 2026
🗓 Tuesday 3 February 2026
👥 Open to patients, carers, clinicians, scientists, and anyone who lives or works with aspergillosis
🧬 This year’s theme:
“How can the genomics revolution help patients with chronic aspergillosis?”
MORNING: how can the ‘genomics revolution’ help chronic aspergillosis patients?
[Don’t worry if you know nothing about genetics – we will explain everything as we go along, with as little jargon as possible!]
09:00 Teams meeting opens
09:30 Introductions
09:55 Welcome & intro (Beth)
10:15 What do patients want (and need) to know about genetics? (Lisa, Aspergillosis Trust)
10:45 Is there a ‘gene for CPA’? (Paul Bowyer, University of Manchester)
11:00 Primary immune defects that predispose to fungal infections (Graham, NAC, NHS)
11:30 Can CYP2C19 genotyping help voriconazole dosing? (Beth, NAC, NHS)
LUNCH
AFTERNOON: urgent gaps in patient knowledge
13:00 Patient story: ABPA and cortisol (Alison)
13:30 Raising awareness of Aspergillosis in Portugal (João Dias Cardoso)
14:15 Patient story: A ‘typical’ day in the life of an ABPA patient (Marcela, Portugal)
14:35 Patient story: Managing side effects of azole antifungals
14:45 A new toolkit for aspergillosis patients (Leah Linton, University of Exeter)
15:00 Meeting ends, but Teams will stay open for general discussion and socialising
Why genomics — and why now?
Modern molecular tests such as PCR and DNA sequencing are becoming faster, cheaper and more accurate. Because of this, the NHS is increasingly exploring how genomic technologies can be used to improve diagnosis, monitoring and treatment across many diseases — including aspergillosis.
This year’s WAD meeting will start an open discussion between patients and professionals about which genomic and molecular tests are likely to matter most for people with aspergillosis in the years ahead.
Topics will include:
-
🧠 Is there a “gene for aspergillosis”?
Should people be tested for genetic susceptibility? -
💊 Genes and voriconazole dosing
Can testing the CYP2C19 gene help personalise antifungal treatment? -
🦠 Tracking antifungal resistance
How molecular testing of Aspergillus strains can help hospitals monitor resistance. -
🔬 Aspergillus PCR at NAC
How PCR is already used to diagnose and monitor chronic aspergillosis.
🗣️ Patient voices at the heart of the meeting
As always, patient experience will be central to the day.
This year will include new patient stories, including Alison, who will talk about how her aspergillosis treatment led to the development of adrenal insufficiency, and what that has meant for her care and daily life.
“I don’t know anything about genetics — is this for me?”
Absolutely yes.
You don’t need any background in genetics to take part. Everything will be explained clearly, step by step, with minimal jargon.
Planned discussion topics include:
-
What do my Aspergillus PCR test results actually mean?
-
Is there really a “gene for CPA”?
-
Why do genes matter for antifungal dosing?
In fact, the more questions you ask — especially the “silly” ones — the better. The discussion from the day will be used to create a new patient leaflet, designed to help people better understand their diagnosis and test results.
We hope you can join us for World Aspergillosis Day 2026 — to learn, to ask questions, and to help shape the future of aspergillosis care together.
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
- NHS England: The Single Patient Record
- NHS England: Shared Care Records
- NHS England: Summary Care Record
- NHS App
This article describes developments in NHS England. Record-sharing arrangements and digital health programmes may differ in Scotland, Wales and Northern Ireland.
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
1. Healthy lungs
Normal expansion and elastic recoil
2. Ageing lungs
Reduced recoil and more air trapping
3. ABPA / bronchiectasis
Inflammation, mucus and airflow obstruction
4. Pulmonary fibrosis
Stiffer tissue, harder to expand
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:
- Understanding lung function tests
- Pulmonary rehabilitation
- Airway clearance techniques
- Allergic bronchopulmonary aspergillosis
- Chronic pulmonary aspergillosis
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.
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.
Further reading
- CDC: Reducing risk for aspergillosis
- 2024 ISHAM clinical practice guidelines for ABPA
- CDC: Clinical overview of aspergillosis
- Gardening and aspergillosis
- Reducing mould exposure
This article provides general information and does not replace advice from your own clinical team.
Can Lung Cavities Heal in Aspergillosis? Understanding Recovery and Treatment
If you have been diagnosed with aspergillosis and a CT scan has shown one or more cavities in your lungs, you may have an important question:
Can these cavities heal, or is the damage permanent?
The answer depends on what caused the cavity, how long it has been present, whether there is ongoing infection or inflammation, and how much permanent damage has occurred to the surrounding lung tissue.
Some cavities become smaller or occasionally disappear. Others remain visible even after treatment has successfully controlled the disease.
Importantly, a cavity does not have to disappear for treatment to be successful. Preventing further damage, controlling symptoms and keeping the condition stable are often realistic and valuable treatment goals.
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.
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.
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.
Further reading and authoritative guidance
- European Society of Endocrinology and Endocrine Society: Diagnosis and Therapy of Glucocorticoid-Induced Adrenal Insufficiency (2024).
- NHS England: Steroid Emergency Card Patient Safety Alert.
- NHS: Addison's Disease and Adrenal Crisis — includes general information about adrenal insufficiency and emergencies, although steroid-induced adrenal insufficiency has a different cause.
- Understanding Steroids, Cortisol, ACTH and Adrenal Suppression in Aspergillosis.
- Antifungal Drug Interactions: What Patients Need to Know.
This article provides general patient information. Steroid tapering, replacement treatment, sick-day dosing and emergency injection plans must be individualised by an appropriately qualified healthcare professional. The article does not replace personal medical advice or emergency care.