Hyper-IgE syndrome and aspergillosis: a patient guide
Hyper-IgE syndromes (HIES) are rare inherited conditions that affect how the immune system works. People with HIES often have very high levels of immunoglobulin E (IgE), but high IgE does not mean that the immune system is working more effectively.
HIES is not the same as having allergies, asthma or ABPA, although there can be overlap. It is a primary immunodeficiency: a problem with the immune system itself that can make certain infections harder to prevent and treat.
What are the signs of hyper-IgE syndrome?
Symptoms vary between people and between the different forms of HIES. They often begin in childhood and may include:
- long-standing eczema or very sensitive skin
- recurrent skin infections or boils
- repeated chest, sinus or ear infections
- very high IgE and raised eosinophils on blood tests
- bronchiectasis or other lung damage after repeated infections
- in some forms, dental, bone, joint or connective-tissue problems.
Several different genetic changes can cause HIES. The two better-known forms involve the STAT3 and DOCK8 genes, but this is a group of related conditions rather than one single disease.
Why does it matter in aspergillosis?
Repeated lung infections can lead to bronchiectasis, scarring or cavities in the lungs. These changes can make it easier for Aspergillus to cause problems.
People with HIES may develop different forms of aspergillosis, including allergic disease or more persistent fungal infection in damaged areas of lung. Their treatment and monitoring often need to be planned jointly by immunology, respiratory and infectious-disease or fungal-infection specialists.
High IgE alone does not diagnose HIES. Many people with asthma, eczema, ABPA or other allergic conditions have raised IgE without having a primary immunodeficiency.
How is HIES diagnosed?
Diagnosis is based on the overall pattern of infections, skin and lung problems, blood tests, family history and, where appropriate, genetic testing. A clinical immunology team will usually lead this assessment.
If you have recurrent or unusual infections, severe eczema, markedly raised IgE, or a family history of immune problems, ask your doctor whether an immunology opinion would be helpful.
How is it managed?
There is no single treatment that suits everyone. The aim is to prevent infections where possible, treat them promptly, protect the lungs and support day-to-day health. Depending on the type of HIES and the person’s needs, care may include:
- regular review by an immunology team
- prompt investigation and treatment of infections
- antibiotics or antifungal medicines when clinically needed
- immunoglobulin replacement for some people
- airway-clearance physiotherapy and treatment for bronchiectasis
- monitoring of lung health, medicines and possible drug interactions.
Your own team will advise on vaccinations, infection prevention and medicines. Do not make changes to antibiotics, antifungals or steroids without discussing them with the clinician who prescribes them.
Further information
Immunodeficiency UK: Hyper-IgE syndromes
This page provides general information and does not replace advice from your own specialist team.
Gentle yoga and movement with aspergillosis
Gentle movement can help maintain strength, flexibility, confidence and wellbeing when you are living with aspergillosis or another long-term lung condition. Yoga may be one option, particularly if you prefer slower, adapted or chair-based activity.
Yoga is not a treatment for aspergillosis and it does not replace pulmonary rehabilitation, prescribed treatment or airway-clearance physiotherapy. It may, however, be a helpful addition to an exercise plan agreed with your clinical team.
Talk to your respiratory team or physiotherapist first
Before starting a new yoga, exercise or breathing routine, speak to your respiratory team or specialist physiotherapist. They can help you choose an activity level that is safe for your condition, symptoms and current treatment.
This is particularly important if you have recently been unwell, cough up blood, use oxygen, have severe breathlessness, dizziness, chest pain, balance problems, or have had a recent treatment change or hospital admission.
Yoga for people with lung conditions
The Irish Lung Fibrosis Association has produced a free yoga session designed for people living with lung disease. It includes breathing, relaxation and movement exercises, with options that can be done seated in a chair as well as standing.
The video was made for people with lung fibrosis, not specifically aspergillosis. Ask your physiotherapist or clinical team whether it is suitable for you before trying it.
Watch the ILFA yoga session for people with lung conditions
If you are advised to try yoga or gentle exercise
Start with a short session and move slowly. Take breaks when you need them, and use the version of an exercise that feels manageable for you. The aim is to be safely active, not to push through severe breathlessness or exhaustion.
Stop and seek medical advice if you develop chest pain, feel faint, have severe breathlessness that does not settle, or experience new worrying symptoms.
Pulmonary rehabilitation: the evidence-based starting point
Pulmonary rehabilitation is a structured programme of exercise, education and support for people with long-term lung conditions. It is individually assessed and adapted, helping people manage breathlessness, build confidence and stay active.
Find out more about pulmonary rehabilitation for aspergillosis.
Other exercise resources
- Asthma + Lung UK: exercises to help you feel more energetic – includes seated and standing options at different levels.
- Irish Lung Fibrosis Association: exercise and online classes.
Key message
Yoga and chair-based movement may be helpful additions to an exercise plan agreed with your clinical team or specialist physiotherapist. Pulmonary rehabilitation is usually the best evidence-based starting point for people with long-term lung conditions.
This page provides general information and does not replace advice from your own clinical team.
Seasonal Changes and Aspergillosis: A Year-Round Guide to Staying Well
Weather, temperature, daylight, air quality, pollen and respiratory viruses can all affect how people feel with aspergillosis and other long-term lung conditions. The pattern is personal: one person may notice more cough in cold air, another may struggle with heat, pollen, damp or poor air quality.
Seasonal changes do not cause every flare-up, and worsening symptoms should never automatically be put down to the weather. But understanding the pressures each season can bring can help you plan ahead, stay active and know when to ask for advice.
Key points
- Cold air, heat, pollen, smoke, damp and respiratory viruses can all aggravate respiratory symptoms in different ways.
- Aspergillosis is not caused by ordinary seasonal exposure to outdoor air. The aim is to reduce unusually high or avoidable exposures, not to avoid everyday life.
- Regular medicines, airway clearance, hydration, activity, a warm dry home and a clear action plan all help make difficult periods more manageable.
- If symptoms are significantly worse than usual, persistent or worrying, speak to your healthcare team rather than assuming they are seasonal.
Why can seasons affect respiratory symptoms?
The seasons change more than the temperature. They can alter humidity, pollution levels, pollen and fungal-spore concentrations, the amount of time we spend indoors, our activity levels and the viruses circulating in the community.
For someone with sensitive or damaged airways, several small pressures can combine. For example, a winter virus may occur when you are less active, your mucus is harder to clear and your home is cooler or damper than usual. In summer, poor sleep during a heatwave and dehydration may make fatigue and breathlessness more difficult to manage.
This does not mean that every symptom has one simple environmental cause. Aspergillosis, asthma, bronchiectasis, COPD, medicines, allergies, anxiety and infection can all affect the same symptoms: cough, sputum, wheeze, tiredness, chest tightness and breathlessness. A changing pattern is worth noticing, but it is also worth discussing with a clinician if it does not settle.
Spring: pollen, changeable weather and returning outdoors
Spring can bring rapid temperature changes, pollen and more time outside. Pollen does not cause aspergillosis, but it can worsen hay fever, allergic asthma and sensitive airways. This may make cough, wheeze or chest tightness more noticeable.
For some people, spring also means gardening resumes. Soil, compost, leaf mould and decaying vegetation can contain high concentrations of fungal spores. Being outdoors is usually good for wellbeing and physical activity, and most people with aspergillosis do not need to avoid gardens. The sensible precaution is to avoid activities that create a visible cloud of dust or fungal material.
Practical steps in spring
- Check pollen forecasts if you know pollen affects your asthma, nose or eyes.
- Build outdoor activity up gradually after a less active winter. A little and often is often more sustainable than one ambitious day.
- Ask somebody else to turn compost, empty mouldy pots or handle heavily decayed garden material where possible.
- Try to avoid gardening in very dry, dusty conditions or windy conditions that blow dust directly towards you.
- Discuss suitable respiratory protection with your clinical team if gardening or outdoor work involves a high exposure to dust, compost or mouldy material.
- Keep taking prescribed inhalers and allergy treatment as advised; do not wait until symptoms are severe.
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Masks and high-exposure tasks: A well-fitting particulate respirator may reduce exposure during unusually dusty or mouldy activities, such as handling compost or clearing decaying vegetation. Most people do not need a mask for ordinary time outdoors. Read our detailed guide to face masks, gardening dust and respiratory viruses.
Summer: heat, dehydration, pollution and travel
Hot weather can make breathing feel harder, particularly when humidity is high. It can disturb sleep, reduce appetite and make fatigue more pronounced. Heat also increases the risk of dehydration, which may leave mucus thicker and harder to clear.
Outdoor air pollution can be worse during some warm, still-weather periods. Smoke from wildfires may also affect UK air, even when the fire is far away. People with long-term lung conditions may notice more irritation or breathlessness during these episodes.
Practical steps in summer
- Drink regularly unless your healthcare team has given you a fluid restriction.
- Plan necessary activity for cooler parts of the day and give yourself more time for it.
- Use shade, fans, cool rooms and light clothing to reduce heat strain.
- Continue airway-clearance routines. If mucus is becoming difficult to clear, seek physiotherapy or clinical advice rather than simply trying to cough harder.
- Check local air-quality information when you feel unusually sensitive or when there is a pollution or smoke alert.
- Keep repeat prescriptions, inhalers, nebuliser supplies and a current medicines list organised before holidays or travel.
Air conditioning can be useful in hot weather when it is correctly maintained. It should remove moisture and improve comfort, not introduce damp or musty air. Read our guidance on air conditioning, mould and aspergillosis and our Air Quality hub.
Autumn: damp, decaying vegetation and preparing for winter
Autumn often brings cooler, wetter weather and more decaying plant material outdoors. Fungal spores are a normal part of the environment, but concentrations can vary with weather, vegetation and local conditions. Wet leaves, compost heaps and garden clearances can create unusually high exposures.
It is also a good time to prepare your home and treatment plan for winter. Persistent condensation, leaks, damp patches or visible mould should be addressed at the source. Cleaning a mould patch may improve its appearance, but it will not solve an ongoing leak, inadequate ventilation or another moisture problem.
Practical steps in autumn
- Report and investigate leaks, condensation and recurring mould promptly.
- Use kitchen and bathroom extraction during and after cooking or showering.
- Dry clothes with adequate ventilation rather than allowing rooms to remain cold and damp.
- Arrange seasonal vaccinations that are recommended for you, and check when you are eligible.
- Make sure you have enough regular medication, inhalers, nebuliser supplies and airway-clearance equipment before the winter period.
- Review any written asthma, COPD, bronchiectasis or flare-up plan with your clinical team if it is out of date.
For practical advice on homes, landlords, damp and mould, visit our Housing, Damp and Mould hub.
Winter: cold air, respiratory viruses and keeping life moving
Cold air can irritate sensitive airways and trigger coughing, wheeze or breathlessness. It may also feel harder to keep mucus moving when people are less active or spend more time indoors. Winter is also the period when respiratory viruses commonly circulate more widely.
Cold weather does not directly cause every chest infection. However, viral infections can trigger a flare-up of asthma, bronchiectasis or other lung conditions. They can also leave people more tired and less able to clear mucus effectively.
Practical steps in winter
- Keep warm outdoors. A scarf or loose face covering over the nose and mouth can make incoming air feel less cold and dry.
- Maintain airway clearance and gentle movement within your limits. Several short activities can be more realistic than one long session.
- Try to keep your home comfortably warm and dry, while still ventilating moisture from cooking and bathing.
- Follow your individual asthma or respiratory action plan if you have one.
- Ask for help early if you develop symptoms that are significantly different from your usual pattern, rather than waiting for a difficult period to pass.
- Stay connected. Winter isolation, poor sleep and reduced activity can have a genuine effect on wellbeing as well as physical symptoms.
Respiratory infections: be prepared, but do not panic
People with aspergillosis often become understandably alert to any cough, sputum or temperature change. Respiratory viruses and bacterial infections can make underlying lung disease worse, but not every bad day means a new infection.
It can help to know what is normal for you: your usual cough, sputum, breathing and energy levels. Contact your healthcare team if symptoms are persistently worse than usual, if you develop a new pattern, or if you are unsure whether to start the treatment described in your individual plan.
Useful preparations include keeping key contact details available, ordering medicines in good time, knowing how to use your inhalers or nebuliser correctly, and keeping any written action plan somewhere easy to find. If you have asthma, follow the plan agreed with your asthma team. Do not change antifungal treatment or steroid doses without clinical advice unless your own plan specifically tells you to do so.
Looking after your mental wellbeing
Seasonal changes can bring a sense of uncertainty: concern about catching infections in winter, anxiety about mould or pollution, or frustration when heat and fatigue limit usual plans. It is reasonable to take sensible precautions, but trying to make every environment completely risk-free can become exhausting and unnecessarily restrictive.
A more helpful approach is to focus on what is within your control: medication, pacing, reducing clearly avoidable exposures, keeping your home as dry and well maintained as possible, and asking for support when you need it. Staying socially connected and retaining enjoyable activity, with adaptations where needed, matters throughout the year.
A year-round seasonal checklist
- Keep prescriptions and essential supplies up to date.
- Know your usual symptoms and notice sustained changes.
- Continue prescribed treatment and airway clearance.
- Adapt activity to your energy, the weather and air quality—without stopping altogether where it is safe to continue.
- Reduce obvious triggers such as smoke, strong aerosols, damp, mould and unusually dusty or mouldy material.
- Check air-quality, pollen or weather information when this helps you plan—not as a reason to avoid every outdoor activity.
- Keep a clear plan for whom to contact if symptoms worsen.
- Stay connected with family, friends, peer support or the NAC online meetings.
When should I seek medical advice?
Seasonal conditions can affect symptoms, but they should not explain away a significant deterioration. Contact your healthcare team if cough, breathlessness, wheeze, sputum, chest pain, fever or fatigue are persistently worse than usual, or if you are concerned about a new change.
Follow your individual action plan where you have one. Seek urgent medical help for severe breathing difficulty, rapidly worsening symptoms, confusion, blue or grey lips/skin, or any other medical emergency.
This information supports, but does not replace, advice from your own healthcare team. Your treatment and precautions should take account of the type of aspergillosis you have, any other lung conditions and your individual medical history.
Sunflower lanyards: extra support when travelling with aspergillosis
Air travel can be tiring and stressful when you are living with aspergillosis or another long-term health condition. Breathlessness, fatigue, anxiety, pain or the need for extra time may not be obvious to other people.
The Hidden Disabilities Sunflower is a voluntary scheme that lets you discreetly indicate that you may need a little more time, patience or support. You can choose to wear a sunflower lanyard, badge or card when it feels helpful.
How can a Sunflower lanyard help?
At participating airports, transport providers and other venues, trained staff may recognise the Sunflower and offer understanding or assistance. It can be particularly helpful if you find queues, busy environments or explaining your needs difficult.
For example, Manchester Airport recognises the Sunflower and explains the support available for passengers with non-visible disabilities.
Important: it does not guarantee assistance
A Sunflower lanyard is a helpful signal, but it does not automatically provide special assistance, priority boarding or fast-track security. Support varies between airports, airlines and countries.
If you need help getting through the airport, walking longer distances, carrying equipment or boarding the aircraft, contact your airline or travel provider in advance and request the assistance you need. Do not rely on a lanyard alone.
Before you travel
- Check whether your departure and arrival airports recognise the Sunflower scheme.
- Arrange airport assistance in advance if you need it.
- Keep essential medicines in your hand luggage, in their original labelled packaging.
- Carry a current medication list and, if helpful, a brief letter or clinic summary.
- Make sure your travel insurance covers your pre-existing health conditions.
- Discuss travel with your clinical team if you have recently been unwell, are having treatment changes, or are unsure whether flying is suitable for you.
Further information
The Hidden Disabilities Sunflower website lists participating airports and airlines. Always check the accessibility information for your own journey before travelling.
Itraconazole for aspergillosis: benefits, monitoring and side effects
Itraconazole is an antifungal medicine used to treat several forms of aspergillosis. It belongs to a group of medicines called triazole antifungals. It does not usually make people feel better immediately: its purpose is to reduce or control the fungal infection over time.
What is itraconazole used for?
Your specialist may prescribe itraconazole for conditions including:
- chronic pulmonary aspergillosis (CPA)
- allergic bronchopulmonary aspergillosis (ABPA)
- Aspergillus bronchitis
- severe asthma with fungal sensitisation (SAFS)
It is not the right medicine for everyone. The choice depends on your diagnosis, other medicines, test results and how well you tolerate treatment.
What benefits might I notice?
For people with CPA, itraconazole may help control fungal activity, stabilise symptoms and reduce the risk of the infection progressing. For people with ABPA, it may reduce the amount of fungal material in the airways and, for some people, reduce the need for steroid treatment.
Benefits are often gradual. Your clinical team will judge whether it is helping by looking at your symptoms, scans, blood tests and other results.
How to take itraconazole
Itraconazole comes in more than one formulation. Capsules are normally taken straight after a full meal, while the oral solution is usually taken on an empty stomach. Follow the instructions on your own pharmacy label exactly.
Do not swap capsules for liquid, or change the way you take them, without speaking to your specialist team or pharmacist. The different formulations are absorbed differently.
Medicines that can reduce absorption
Acid-reducing medicines, including proton pump inhibitors such as omeprazole and lansoprazole, H2 blockers, and indigestion remedies or antacids, can reduce absorption of itraconazole capsules. This does not necessarily mean you must stop them: your team may be able to adjust the timing, formulation or treatment plan. Ask before making any change.
Why monitoring matters
Itraconazole levels in the blood can vary considerably between people. Your team may arrange therapeutic drug monitoring (TDM), especially after starting treatment, changing the dose or formulation, or if the medicine does not seem to be working as expected.
You will also usually have liver blood tests before treatment and at intervals during longer courses. These checks help your team make sure you are getting enough medicine to work, without exposing you to unnecessary risk.
Interactions: an essential safety check
Itraconazole can interact with many prescription medicines, over-the-counter products and herbal remedies. Some interactions can be serious.
Always tell your doctor, pharmacist and aspergillosis team about everything you take, including inhalers, steroids, blood-thinning medicines, cholesterol medicines, sleeping tablets, heart medicines, transplant or immune-suppressing medicines, vitamins and herbal products.
Do not start, stop or change another medicine without checking first. This includes St John’s wort, which can make itraconazole less effective. Avoid grapefruit and grapefruit juice unless your own pharmacist or specialist has advised otherwise.
Possible side effects
Many people tolerate itraconazole well. Possible side effects include:
- feeling or being sick
- indigestion, stomach discomfort or diarrhoea
- headache
- tiredness
- rash or itching
Contact your clinical team promptly if you notice:
- tingling, numbness, burning pain or weakness in your hands or feet
- new ankle or leg swelling, unexpected weight gain, worsening breathlessness or palpitations
- persistent nausea, vomiting, loss of appetite or marked tiredness
- dark urine, pale stools, yellow skin or eyes, or pain in the upper right side of your abdomen
- a new or worsening rash
Seek urgent medical help for severe breathlessness, chest pain, fainting, swelling of the face or throat, or a severe blistering or peeling rash.
Practical reminders
- Take itraconazole exactly as prescribed.
- Do not alter the dose or stop treatment suddenly unless your prescribing team tells you to.
- Keep your blood-test and clinic appointments.
- Tell your pharmacist that you take itraconazole whenever a new medicine is suggested.
- If you are having side effects or finding the routine difficult, contact your team early. Often there are options to discuss.
Key message
Itraconazole can be an important treatment for aspergillosis, but it works best when it is taken consistently and monitored carefully. Regular blood tests and a thorough check of your other medicines are a normal and important part of safe treatment.
This page is general information and does not replace advice from your own specialist team.
Further information
- Electronic Medicines Compendium: patient information leaflets
- Report suspected side effects through the MHRA Yellow Card scheme
Pulmonary rehabilitation: can it help people with aspergillosis?
Living with aspergillosis or another long-term lung condition can make everyday activities feel harder. Breathlessness, fatigue, cough and worry about triggering symptoms can gradually lead to doing less. Pulmonary rehabilitation may help some people safely rebuild confidence and fitness.
What is pulmonary rehabilitation?
Pulmonary rehabilitation (PR) is a structured programme of individually tailored exercise, education and support for people whose lung condition causes breathlessness or limits daily activity. It is not a test that you have to “pass”, and it is not simply being told to exercise harder.
Most programmes run for six to eight weeks, with supervised sessions at least twice a week. They usually include aerobic and strengthening exercises, advice about managing breathlessness and fatigue, and a plan for staying active afterwards.
Can it help people with aspergillosis?
Many people with aspergillosis also have bronchiectasis, asthma, COPD or another long-term lung condition. Current British Thoracic Society standards say pulmonary rehabilitation should be offered promptly to people with symptomatic chronic respiratory disease, including bronchiectasis, asthma and interstitial lung disease.
The 2025 European bronchiectasis guideline also strongly recommends pulmonary rehabilitation for people who experience breathlessness or reduced exercise capacity.
There is less research specifically in aspergillosis, so PR should be considered as part of your individual care rather than as treatment for the infection itself. Your clinical or physiotherapy team can advise whether it is appropriate and whether any adaptations are needed.
Is it worth it?
For many people, yes. Pulmonary rehabilitation cannot remove the underlying lung condition, but it may help you:
- do more before becoming breathless;
- build strength for everyday activities;
- feel more confident about moving and exercising safely;
- understand pacing, breathlessness and energy conservation better; and
- maintain activity after the course has ended.
A good programme should be adapted to you. Tell the team if you find a group setting tiring, have transport difficulties, are recovering from a deterioration in symptoms, or need adaptations around oxygen use, pain, fatigue or other health conditions. Centre-based PR is not the only option: evidence-based home or digital programmes may be available where these are more suitable.
What do patients say?
A large international survey of 1,685 people with chronic lung disease found strong support for pulmonary rehabilitation among people who had experienced it. Participants also highlighted real barriers, including travel, cost and limited awareness of the service. Aspergillosis was not specifically represented in that survey, but the message remains useful: a well-designed programme can be valuable, while access and individual support matter.
How do I access pulmonary rehabilitation?
Ask your GP, respiratory consultant, specialist nurse or physiotherapist whether pulmonary rehabilitation could help you. Services vary locally. If centre-based sessions are not practical, ask whether there is an evidence-based home, digital or community-based alternative.
Do not begin a demanding exercise programme alone if you are currently unwell, have had a recent deterioration in symptoms, or have been advised to limit activity. Seek individual advice from your clinical team.
Further reading
- NHS England: Pulmonary rehabilitation
- British Thoracic Society quality standard for pulmonary rehabilitation (2026)
- European Lung Foundation: bronchiectasis guideline information
- Patients’ perspective on pulmonary rehabilitation
Lung function tests
Lung function tests, sometimes called pulmonary function tests (PFTs), measure how well your lungs move air in and out and how effectively oxygen passes from your lungs into your blood. They are commonly used alongside symptoms, scans, blood tests and sputum tests to help assess lung conditions, including aspergillosis.
The tests can be tiring because they need your best effort, but the staff carrying them out will explain what to do and can pause if you need a rest. A result is one part of the overall picture; it should never be interpreted in isolation.
Why might I have lung function tests?
Your clinical team may use them to:
- help investigate breathlessness, cough or wheeze
- identify patterns that suggest narrowed airways or reduced lung volume
- monitor asthma, COPD, bronchiectasis or other lung disease alongside aspergillosis
- assess whether treatment is helping
- provide a baseline before some treatments or surgery
- follow changes over time.
Spirometry: the most common test
Spirometry measures how much air you can blow out and how quickly you can do it. You sit upright, breathe into a mouthpiece and are usually asked to take a full breath in, then blow out as hard and as long as you can. You will normally repeat the manoeuvre several times so the best reliable result can be recorded.
It can feel surprisingly demanding. The encouragement from the physiologist is not a judgement: it helps make sure the result genuinely reflects the best you could do on that day.
FEV1
Forced expiratory volume in one second (FEV1) is the amount of air you can force out in the first second of a full exhalation. It is one useful measure of airflow through the airways.
FVC
Forced vital capacity (FVC) is the total amount of air you can force out after taking the deepest breath possible.
The FEV1/FVC ratio
Comparing these two values helps clinicians look for a pattern of airflow obstruction, which can occur in conditions such as asthma or COPD. A low FEV1 does not, by itself, explain why it is low or diagnose a particular condition.
Other lung function tests
Peak flow
Peak flow measures the fastest speed at which you can blow air out. It is often used to monitor asthma, especially when readings are recorded regularly at home. A single reading is less useful than the pattern over time and how it relates to your symptoms.
Bronchodilator reversibility testing
You may be asked to repeat spirometry after using an inhaler that opens the airways. This can show whether airflow improves after bronchodilator medicine. Follow the appointment instructions carefully: you may be asked to take, or to temporarily withhold, particular inhalers before the test.
Gas-transfer testing
A gas-transfer test, also called diffusion capacity testing, looks at how effectively oxygen moves from the tiny air sacs in your lungs into your bloodstream. You may be asked to breathe in a harmless test gas, hold your breath briefly, then breathe out. This can provide useful information when assessing a range of lung conditions.
Lung volumes
Some people have more detailed tests to measure the total volume of their lungs and the amount of air left after breathing out fully. These tests can help distinguish between different patterns of lung disease and may be arranged in a specialist lung-function laboratory.
What do the results mean?
Your results are compared with reference values for people with similar characteristics, including age, height and sex. They may be shown as a percentage of the predicted value or alongside a reference range.
It is understandable to focus on a number, but trends are usually more useful than one result. Readings can be affected by a recent infection or flare-up, tiredness, cough, technique, whether you have taken an inhaler, and how well you feel on the day.
Your team will interpret the results alongside your symptoms, examination, scans, blood tests and previous lung-function results. Ask what your results mean for you, whether they have changed over time, and whether any action is needed.
Preparing for your test
Your appointment letter should tell you whether to take your usual inhalers and other medicines before the test. Do not stop any prescribed medicine unless you have been specifically asked to do so.
- Wear comfortable clothing that does not restrict your chest or abdomen.
- Arrive in good time so you are not rushed.
- Tell the physiologist if you feel unwell, have recently coughed up blood, have chest pain, or are recovering from an illness or procedure.
- Tell them if you feel dizzy, very breathless or anxious during testing. You can ask to pause.
Key message
Lung function tests are not a pass-or-fail test and they do not measure effort or determination. They give your clinical team useful information about how your lungs are working at that moment, particularly when compared with earlier results and the rest of your clinical picture.
This page provides general information and does not replace advice from your own clinical team.
Hot weather and aspergillosis: staying cool and breathing easier
Hot weather can be uncomfortable for anyone, but it can be especially difficult if you have aspergillosis, asthma, bronchiectasis, COPD or another long-term lung condition. Heat can make breathing feel harder, disturb sleep, worsen tiredness and, in some people, contribute to dehydration or a flare-up of respiratory symptoms.
A little planning can make hot days safer and more manageable.
Why heat can affect breathing
When it is hot, your body works harder to keep cool. This can increase your heart rate and make you feel short of breath or exhausted more quickly. Hot, humid or polluted air can also irritate sensitive airways. Some people find that pollen, smoke or poor air quality add to the problem.
People who are older, have heart or lung disease, take several medicines, or have limited mobility may be at greater risk of becoming unwell in hot weather.
Keep cool at home
- Close curtains or blinds in rooms facing the sun during the day.
- Keep windows closed when the air outside is hotter than indoors; open them later in the evening or overnight if it is safe to do so.
- Move to the coolest room in the house, especially during the hottest part of the day.
- Use a fan to improve comfort, but remember that a fan does not lower the room temperature. Cool your skin too, with a cool shower, damp cloth or spray of water.
- Wear loose, lightweight clothing and use light bedding at night.
- Turn off lights and electrical equipment that are not needed, as these can add heat.
Drink regularly
Have regular cold drinks throughout the day, even if you do not feel very thirsty. Water is a good choice; cold foods with a high water content can help too. Limit alcohol, which can contribute to dehydration.
If a clinician has told you to restrict fluids because of heart, kidney or another health condition, follow their advice rather than increasing your intake.
Plan outdoor activity carefully
- Try to avoid the hottest part of the day, usually from 11 am to 3 pm.
- If you need to go out, seek shade, wear a hat and take water with you.
- Move exercise, walks and essential jobs to early morning or later evening.
- Check the weather forecast and air-quality information. On days with high pollution, smoke or pollen, staying indoors may be more comfortable.
- Take your usual inhalers and other essential medicines with you.
Medicines and hot weather
Continue to take prescribed medicines as directed. Do not stop or change medicines because of the weather without speaking to your pharmacist, GP or specialist team. Ask a pharmacist if you are unsure how to store a medicine during hot weather, as some treatments should not be left in a hot car or direct sunlight.
If you use an inhaler, nebuliser, oxygen or airway-clearance equipment, make sure you have the supplies you need before a period of hot weather begins.
Air conditioning and fans
Air conditioning can make a room more comfortable and can reduce indoor humidity. However, units that become damp, dirty or poorly maintained can support mould growth. If you use air conditioning, follow the manufacturer’s cleaning and maintenance instructions, empty or drain portable units as directed, and arrange servicing where needed.
Read more: Air conditioning units and mould: what people with aspergillosis should know.
Know when to get help
Heat exhaustion can cause tiredness, dizziness, headache, nausea, heavy sweating, cramps, thirst or weakness. Move to a cool place, drink cool fluids if you can, cool your skin and ask someone to stay with you.
Call 999 if someone is confused, collapses, has a seizure, is very hot and unwell, or does not improve quickly after cooling down.
Seek urgent medical advice if your breathlessness is substantially worse than usual, you have chest pain, blue or grey lips, new confusion, or your usual rescue treatment is not helping. For non-emergency urgent advice in England, call NHS 111.
Prepare before a heatwave
- Keep drinks, easy cold food and regular medicines available.
- Make sure someone knows to check in on you if you live alone or are likely to struggle in the heat.
- Keep your care plan and important contact numbers accessible.
- Watch for UKHSA and Met Office Heat-Health Alerts during warmer weather.
For current general advice, see the NHS guide to coping in hot weather and UKHSA guidance on staying safe in hot weather.
Reviewed: September 2026
This Week in Aspergillosis Research: Dupilumab and ABPA
This week in aspergillosis research
Each week we look at recently published research that may be relevant to people affected by aspergillosis, their families and healthcare professionals. Most new studies are early pieces of a much larger evidence base, so they rarely change treatment immediately. They can, however, point towards promising areas for future care.
Dupilumab and ABPA in children with cystic fibrosis
The most directly relevant paper this week is a small case series describing three children with cystic fibrosis (CF) and difficult-to-control allergic bronchopulmonary aspergillosis (ABPA).
ABPA is an allergic inflammatory reaction to Aspergillus in the airways. It can cause worsening asthma-like symptoms, mucus plugging, lung inflammation and repeated flare-ups. Treatment commonly includes steroid medicines and antifungal medication, but both can be difficult to use over the long term because of side effects, interactions or limited response.
In this report, the children received dupilumab, a biologic medicine that blocks parts of the type 2 allergic-inflammatory pathway. The authors reported falls in total IgE and that treatment was well tolerated.
This is encouraging, particularly for people whose ABPA remains active despite standard treatment or where steroids cause major problems. However, it is important to keep the finding in proportion: this was a report of only three children with CF, not a controlled clinical trial. It cannot yet show which patients will benefit, how it compares with other treatments, or whether the results apply to adults or people with ABPA who do not have CF.
Read the paper: Dupilumab for ABPA in three children with cystic fibrosis
COVID-19-associated pulmonary aspergillosis
A study from a Brazilian tertiary hospital examined Aspergillus isolates from critically ill patients with suspected COVID-19-associated pulmonary aspergillosis (CAPA). The researchers analysed 17 isolates from respiratory samples, focusing on species identification and susceptibility to antifungal medicines.
CAPA remains an important concern for people who are severely unwell with COVID-19 in intensive care. Studies like this help laboratories and clinical teams understand which Aspergillus species are involved locally and whether there are signs that treatment may be affected by antifungal resistance.
This is primarily a specialist and hospital-based study. It does not suggest that ordinary COVID-19 infection causes aspergillosis in otherwise well people, but it adds useful evidence about a serious complication in critically ill patients.
Read the paper: CAPA study from Brazil
Why antifungal resistance continues to matter
A new review looks at how Aspergillus fumigatus causes disease in people with different levels of immune function. It also discusses resistance to azole antifungal medicines, a group that includes commonly used treatments such as itraconazole, voriconazole, posaconazole and isavuconazole.
Resistance does not mean that antifungal treatment will fail for every person. It does underline why specialist care often includes identifying the fungus where possible, testing its susceptibility to treatment, monitoring medicine levels and reviewing treatment response carefully.
The paper is a narrative review rather than new clinical-trial evidence, but it is a useful overview of why resistance is an ongoing issue for clinicians and researchers.
Read the review: Aspergillus fumigatus, disease and triazole resistance
What this means for patients
The dupilumab report is a welcome early signal, but it is not yet enough to change usual ABPA treatment. If you have questions about biologic medicines, steroids, antifungal treatment or treatment side effects, discuss them with your aspergillosis or respiratory team. They can consider your diagnosis, test results, other medicines and individual circumstances.
Research helps build the evidence base, one study at a time. We will continue to share developments that are likely to be useful to the aspergillosis community.
Getting the Best from Aspergillosis Support Groups
Talking to other people who live with aspergillosis can be enormously helpful. Someone else may understand the fatigue, uncertainty, treatment difficulties or everyday frustrations in a way that even supportive family and friends sometimes cannot.
Patient groups can provide friendship, practical ideas, reassurance and the simple knowledge that you are not the only person dealing with this illness.
But support groups can sometimes be difficult too. Reading about somebody who is very unwell can be frightening. Advice that was appropriate for one person may be completely inappropriate for another. And spending too much time reading about illness can occasionally leave you feeling more anxious rather than better supported.
During a recent Thursday Session, patients discussed how they use support groups and how different people find different levels of involvement helpful.
What can a patient support group give you?
Research into peer support for people living with long-term health conditions has found a wide range of potential benefits. These include emotional support, practical information, increased confidence, a greater sense of belonging and help with managing life with illness.
For people with an uncommon condition such as aspergillosis, meeting somebody else who understands the disease can be particularly valuable. You may never encounter another person with aspergillosis in everyday life.
Support does not always mean receiving advice. Sometimes it is simply being able to say, “This has happened to me too,” and knowing that somebody understands.
You don't have to join every conversation
People participate in patient communities in very different ways.
Some people ask questions or contribute regularly. Others read discussions, watch recordings or listen to meetings without saying very much themselves. Some join only when something changes in their health and then disappear again when things settle down.
Research into online health communities suggests that this quieter form of participation can still be useful. You do not have to become an active member of a group to benefit from it.
If simply knowing that support is there when you need it is enough for you, that is a perfectly reasonable way to use a patient community.
Remember that the people you hear from are not necessarily typical
One important feature of patient groups is that the people who have something happening in their lives are often the people most likely to post.
Someone who is worried about a new symptom, struggling with treatment or experiencing a deterioration has a reason to ask for help. Someone whose aspergillosis has been stable for months may have much less reason to start a conversation.
This can make a support group appear as though everybody is having problems, even when many people in the wider patient community are relatively stable.
As we have discussed previously in Your Aspergillosis Story Is Not Someone Else's Future, another patient's experience can be valuable information, but it is not a prediction of what will happen to you.
Be careful with medical advice from other patients
Patients often accumulate considerable knowledge about their own illness. That experience can be extremely useful to others.
But there is an important distinction between sharing experience and giving medical advice.
“I had this side effect when I took this medicine” is useful lived experience.
“You should stop taking that medicine” is medical advice.
This distinction matters particularly in aspergillosis because the word covers several different diseases. Allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA), Aspergillus bronchitis and invasive aspergillosis are not interchangeable conditions. Patients may also have asthma, bronchiectasis, COPD or other illnesses alongside aspergillosis.
A treatment that makes sense for one person may therefore be unsuitable for somebody else.
If something you read in a patient group makes you think you should change your medication or treatment, discuss it with your healthcare team first.
Good moderation can help
Peer support works because patients can talk openly to one another. It should not become another medical appointment.
However, some degree of moderation can be valuable, particularly when discussions move into medical advice.
A well-run community can allow people to share experiences while correcting potentially dangerous misunderstandings, directing people towards reliable information and reminding participants when a question really needs to be discussed with a healthcare professional.
That does not reduce the value of lived experience. It helps protect it.
What if a support group makes me anxious?
This can happen.
Research on peer support has found many positive effects, but studies also describe possible negative experiences, including distress from reading about other people's illness, information overload and anxiety.
You may notice that you enter a group looking for reassurance but leave worrying about complications that you had never previously considered.
That doesn't necessarily mean there is anything wrong with the group. It may simply mean that you need a different level of engagement at that particular point in your illness.
You can mute notifications. Read only subjects relevant to you. Attend occasionally rather than every week. Stop reading a discussion that is upsetting you. Or take a break completely and return when you want to.
Support should be available when you need it, not become another obligation.
Check frightening information before assuming it applies to you
If somebody describes a serious complication or a difficult treatment experience, it is natural to wonder whether the same thing could happen to you.
Before drawing that conclusion, remember that you may know very little about that person's complete medical situation.
They may have a different type of aspergillosis, other lung diseases, a different immune system, different medications or a very different medical history.
If something genuinely concerns you, use the discussion as a starting point for a question rather than an answer:
“I read about this happening to another person with aspergillosis. Is this something that is relevant to me?”
That is a useful question to take to your clinical team.
Find the kind of support that works for you
A live patient meeting will not suit everybody.
Some people enjoy conversation and getting to know a small group of familiar faces. Others prefer a larger online community where they can read occasionally without participating. Some prefer written information, videos or recordings. Others mainly want support from family, friends or their healthcare team.
Your preference may also change. You might want considerable support soon after diagnosis or during a difficult period, but very little when your condition is stable.
There is no requirement to become part of a patient community simply because you have aspergillosis.
A useful question to ask yourself
Every so often, ask:
“Is being part of this group helping me?”
If it helps you understand your illness, feel less isolated, discover useful questions to ask or simply enjoy talking to people who understand, it is doing something valuable.
If it repeatedly leaves you frightened, overwhelmed or feeling that everybody else's problems are going to become yours, change how you use it or take a break.
Joining the Thursday Sessions
The National Aspergillosis Centre holds informal online Thursday Sessions each week for people affected by aspergillosis.
You are welcome to join the conversation, ask questions or simply listen. There is no pressure to speak and no expectation that you attend every week.
You can also explore other ways of connecting with people affected by aspergillosis through the NAC Communities Hub.
The main message
Patient communities can provide something that medical information alone cannot: the experience of other people who actually live with the condition.
Use that experience as support, perspective and a source of questions — but not as a prediction of your future or a replacement for individual medical advice.
And participate as much or as little as helps you. A good support community should be there when you need it.
This article is for general information and support and does not replace advice from your healthcare team. Do not change prescribed medication or treatment on the basis of advice from other patients without discussing it with an appropriate healthcare professional.