‘I’M STILL STANDING – (ME ‘N ELTON!)'
Breathing Easier After an ABPA Diagnosis: An Anonymous Patient Story
An anonymous personal experience
This account has been adapted from original patient stories, with edits for privacy, clarity and current patient-information standards. Everyone’s symptoms, investigations and treatment are different. It is shared for connection and understanding, not as medical advice.
For many years, I experienced repeated periods of severe respiratory illness. I had flu-like symptoms, an ongoing cough, night sweats and exhaustion. At times I coughed up thick brown mucus plugs, although I did not understand what they might mean. I had previously been treated for asthma and chest infections, but I did not feel that the treatments fully explained or resolved what was happening.
When things became much worse
During one particularly severe episode, I developed persistent pain in one side of my chest, worsening breathlessness and a cough that would not settle. I became so exhausted that everyday tasks felt difficult. After treatment did not help, I was referred for further investigations.
An initial scan showed an abnormal area in my lung. I was told that more tests were needed to understand what it was. Waiting for answers was frightening. I had to take in the possibility that it might be something serious, while trying to manage symptoms that were already having a huge effect on my life.
I was fortunate to have support from people close to me. Their company, practical help and encouragement made a very difficult period more manageable.
A different explanation
As investigations continued, my respiratory team asked questions about my symptoms and possible exposure to moulds. The pattern of illness, scans and blood tests led to a diagnosis of allergic bronchopulmonary aspergillosis (ABPA). A fungal ball was also affecting part of my lung.
Although the diagnosis was daunting, it also brought relief. At last, there was an explanation for years of symptoms and a plan for treatment and monitoring.
Everyone’s route to diagnosis is different. My experience does not mean that asthma is the wrong diagnosis for other people. But it has made me feel that it is important to speak to a clinician if symptoms are changing, worsening or not responding as expected.
Starting treatment
Treatment had a major positive effect on my breathing. I began to sleep better, cough less and breathe without the same pain and wheeze. Follow-up scans later showed that the fungal ball had cleared, leaving only limited scarring.
That improvement was a huge relief. After living with symptoms for so long, I had not realised how much I had adapted to feeling unwell until I began to feel better.
Recovery was not simple
Improved breathing did not mean an immediate return to my previous life. Persistent fatigue and weakness remained difficult. Some days I could be active; on others, my energy could change quickly and I had to slow down, rest or change my plans.
I learned to balance gentle activity with pacing myself. I made practical changes to reduce the demands of everyday life and discussed persistent symptoms with my clinical team. Living with a long-term respiratory condition has meant accepting that recovery is not always straightforward, even when treatment is working.
Living with uncertainty
As my health improved, follow-up became less frequent. I was pleased that treatment had helped, but I also found it unsettling to feel less closely connected to the specialist team that had supported me through a frightening time.
Over time, I have learned that managing ABPA involves a balance: recognising meaningful changes in symptoms, following the monitoring plan agreed with my clinical team, and getting on with life as fully as possible between appointments.
Looking forward
My experience has left me grateful for the clinician who arranged further investigation, for the respiratory team who reached a diagnosis, and for the people who supported me when I was unwell.
My breathing is now much better than it was during that illness. I still have to pace myself and live with some uncertainty, but I also have a diagnosis, a plan and a renewed appreciation of the ordinary things that feeling able to breathe more easily can make possible.
Can I have ABPA without asthma?
Originally published: 29 May 2020 | Last reviewed: 18 September 2026 | Next review: September 2028
Yes—although ABPA is most often diagnosed in people with asthma, it can occasionally be diagnosed in someone who has not previously been told that they have asthma.
Allergic bronchopulmonary aspergillosis (ABPA) is an allergic-type immune reaction to Aspergillus, usually Aspergillus fumigatus, in the airways. It is most commonly associated with asthma and cystic fibrosis, but clinicians may also consider it in people with bronchiectasis, COPD, or a pattern of symptoms and test results strongly suggestive of ABPA.
Why is ABPA usually linked with asthma?
ABPA develops when the immune system reacts strongly to Aspergillus in the airways. Asthma creates an airway environment in which this reaction is more likely to occur, which is why most people with ABPA have asthma or asthma-like symptoms such as wheeze, chest tightness and variable breathlessness.
However, asthma is not always recognised before ABPA is investigated. Some people have had mild or intermittent symptoms, have been given a different diagnosis, or have airway disease dominated by bronchiectasis rather than obvious asthma.
Can ABPA be diagnosed without asthma?
Yes, but it is uncommon. Current international guidance allows clinicians to diagnose ABPA in someone without a recognised pre-existing condition when their overall clinical picture is compatible with the disease.
This is important because a diagnosis should not be ruled out solely because a person does not have an asthma label. At the same time, ABPA is a specialist diagnosis: an elevated allergy test or a positive sputum culture alone does not prove that someone has it.
When might clinicians consider ABPA?
Your clinical team may investigate for ABPA when there is a combination of symptoms, imaging changes and allergy-test results that point towards it. Features can include:
- recurrent episodes of cough, wheeze, breathlessness or chest tightness;
- thick mucus, sometimes with brownish plugs;
- coughing up blood;
- repeated chest infections or areas of inflammation seen on a chest X-ray or CT scan;
- bronchiectasis, particularly when the larger central airways are affected;
- evidence of sensitisation or allergy to Aspergillus; and
- raised total IgE and, in many cases, raised eosinophils.
Several other conditions can cause similar symptoms or test results. Your doctors will interpret the findings together, including your medical history, scans, lung-function tests and blood results.
How is ABPA diagnosed?
There is no single test that confirms ABPA. Diagnosis is based on a combination of findings. Blood tests can look for allergy to Aspergillus, total IgE and eosinophils. A CT scan can show changes such as bronchiectasis or mucus plugging. Sputum samples and lung-function tests may also help build the overall picture.
The 2024 international ISHAM guidelines lowered the total-IgE threshold used within the diagnostic criteria and recognised that a compatible clinical presentation can support diagnosis even where a usual predisposing condition is absent. These criteria are intended to guide specialist assessment; they are not a checklist for self-diagnosis.
What did earlier research find?
A 2019 retrospective study from a specialist centre reviewed 530 people with ABPA. Around 7% had no asthma diagnosis. In that group, bronchiectasis was more common, while lung function was generally better and ABPA flare-ups were less frequent than in participants who also had asthma.
This was an important study because it showed that ABPA without recognised asthma does occur. However, it was conducted at one specialist centre and cannot tell us exactly how common this presentation is in the wider population.
What should you do if you are concerned?
If you have bronchiectasis, recurrent respiratory symptoms or abnormal Aspergillus blood tests and are wondering whether ABPA could be relevant, discuss this with your GP, respiratory clinician or specialist team. Do not change inhalers, steroids or antifungal treatment without clinical advice.
For a broader introduction, visit our ABPA hub.
Further reading
Gwynedd’s Journey to an Aspergillosis Diagnosis
A personal experience
This is Gwynedd’s account of her own diagnosis and treatment journey. Every person’s symptoms, investigations and treatment are different. It is shared for connection and understanding, not as medical advice.
Aspergillosis is a rare and debilitating fungal infection that is caused by aspergillus mould. This mould is found in many places, including soil, rotting leaves, compost, dust, and damp buildings. There are several variants of the disease, mostly affecting the lungs, and diagnosis is difficult because symptoms are like those of other lung conditions.
Gwynedd Mitchell is 62. She has two adult children and lives with her husband in Wales. Gwynedd is no stranger to health problems; she has extensive allergies, has suffered breathing difficulties from six weeks old, and as a child, she was diagnosed with asthma and suffered frequent attacks. But in 2012, she was left shell shocked when she was diagnosed with three aspergillosis variants, allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA) and three aspergillomas (a ball of mould in the lungs).
This is her experience of the aspergillosis diagnostic journey.
Why reducing close contact can help prevent respiratory infections.
Originally published: 6 April 2020 | Last reviewed: 18 September 2026 | Next review: September 2028
Respiratory infections can be particularly disruptive for people with aspergillosis, asthma, bronchiectasis or other long-term lung conditions. A cold, flu, COVID-19 or another viral infection can worsen cough, breathlessness, fatigue and mucus production, and may sometimes trigger an exacerbation.
There are no longer routine social-distancing rules in the UK. However, making a few temporary, practical changes when infection levels are high or when someone close to you is unwell can still help reduce your chance of catching a respiratory virus.
Why does close contact matter?
Many respiratory viruses spread when an infected person breathes, talks, coughs or sneezes. The chance of transmission is usually higher when people are:
- in close contact for a long time;
- indoors, especially in poorly ventilated spaces;
- in crowded settings; or
- near someone who is unwell, even if their symptoms seem mild.
People can sometimes pass on a virus before they realise they are ill. This is why sensible precautions can be helpful during winter, during a local outbreak, or when people in your household have respiratory symptoms.
Small changes can make a difference
This does not need to mean avoiding other people or putting your life on hold. It is about choosing proportionate steps that fit your circumstances. You might consider:
- meeting outdoors, or choosing a well-ventilated place, when practical;
- choosing quieter times for shops, appointments or public transport;
- postponing close social contact with someone who has a new cough, fever, sore throat, streaming nose or feels unwell;
- opening windows or improving ventilation when people are visiting;
- wearing a well-fitting face covering in crowded indoor places if this helps you feel safer;
- keeping up to date with vaccinations you are offered, including flu and COVID-19 vaccines where eligible; and
- washing hands after close contact with someone who is unwell and before eating or preparing food.
When might you take extra care?
You may choose to be more cautious if you are recovering from an exacerbation or hospital admission, have recently started treatment that affects your immune system, are taking high-dose steroids, or know that respiratory infections usually have a major effect on your lungs.
It can also be sensible to take extra care before an important event, such as surgery, a clinic review, travel or a family occasion. Your own experience matters: many people with aspergillosis become very good at recognising the situations in which they are most likely to pick up an infection.
If you develop respiratory symptoms
Follow the advice in your personal asthma, bronchiectasis or respiratory care plan if you have one. Rest, keep hydrated and use your usual prescribed treatments. If your symptoms are more severe than usual, are getting worse, or you are worried, contact your GP, respiratory team or NHS 111.
Continue your usual prescribed respiratory medicines unless your clinician advises otherwise. Follow your personal asthma, bronchiectasis or respiratory care plan, and seek advice early if your symptoms are worsening, different from usual, or not improving as expected.
Seek urgent help for severe breathlessness, chest pain, blue or grey lips, confusion, coughing up a large amount of blood, or if you feel seriously unwell.
Protecting yourself without becoming isolated
Reducing infection risk should not mean losing the people and activities that matter to you. Social connection, exercise, fresh air and enjoyable routines are all important for wellbeing. The aim is to make informed, temporary adjustments when risk is higher—not to live in permanent isolation.
If worries about infection are stopping you from doing things you value, discuss this with your healthcare team. They can help you find a balance that feels safer and more manageable.
Further information
- NHS: how to avoid catching and spreading germs
- NHS vaccinations
- Seasonal changes and aspergillosis
- Vaccination and aspergillosis
Steph Smith
In Memory of Steph Smith
This page remembers Steph Smith and honours the awareness and fundraising work undertaken by her family and partner following her death from invasive aspergillosis in 2009.
Portrait of Steph Smith by her mother, Liz Smith.
Steph Smith was a much-loved daughter, partner, friend and aspiring primary school teacher. In 2009, at the age of 21, she died from invasive aspergillosis following a rapid and devastating illness.
Steph had been completing the final placement of her primary teaching degree when she became unwell. At first, her symptoms were thought to be linked to her asthma. Her breathing then deteriorated quickly and she was admitted to hospital, where she was diagnosed with invasive aspergillosis.
Invasive aspergillosis is a serious fungal infection that can develop rapidly in some people. Steph’s family shared her story to raise awareness of the condition, the importance of recognising severe and worsening symptoms, and the need for better diagnosis and treatment.
Remembering Steph
Steph had worked hard for four years towards her degree in Primary Education. She was looking forward to a career for which she was well suited: caring, thoughtful, energetic and gifted with children.
She had a lifelong love of dance and was an accomplished Highland and ballet dancer. She had been involved with Girlguiding, school music and local community activities, and was remembered by those who knew her for her warmth, generosity and unmistakable smile.
Her asthma had never prevented her from living an active, full life. Her family remember a vibrant young woman for whom “no” was never part of her vocabulary, and who had so much still to look forward to.
A degree awarded in Steph’s honour
On 7 July 2009, Steph’s family attended a private graduation ceremony at the University of Aberdeen. They were presented with her degree, a Bachelor of Education (Aegrotat) in Primary Teaching, awarded in her honour.
Awareness and fundraising
Following Steph’s death, her family and partner raised more than £10,000 to support research into earlier diagnosis and more effective treatment for aspergillosis. Their efforts were an extraordinary tribute to Steph and to the hope that other families might be spared a similar loss.
We remain grateful to Steph’s family for allowing her story to be shared. Steph’s life, and the love and determination of those closest to her, continue to be remembered.
Looking After Your Mental Wellbeing with Aspergillosis
Originally published: 18 May 2020 | Last reviewed: 18 September 2026 | Next review: September 2028
Living with aspergillosis can affect more than your lungs. Symptoms may be unpredictable, treatment can be demanding, and it can be hard to plan around fatigue, appointments, infections or flare-ups. It is understandable to feel anxious, low, frustrated, isolated or worn down at times.
Looking after your mental wellbeing is not a luxury or an optional extra. It can make it easier to cope with symptoms, make treatment decisions and stay connected to the things that matter to you.
There is no “right” way to feel
A diagnosis of aspergillosis, or a change in your health, can bring many different reactions. You may feel relieved to have an explanation for your symptoms, but also worried about the future. You may grieve for activities or independence you have lost. Some days you may feel positive and capable; on others, even small tasks may feel difficult.
These reactions do not mean that you are failing to cope. Chronic illness asks a great deal of people, and feelings can change over time.
Focus on what you can influence
Aspergillosis often involves uncertainty. You cannot control every symptom, test result or appointment outcome, but it can help to identify the small things you can influence today.
- Take medicines and treatments as agreed with your clinical team.
- Keep a short note of symptoms, questions or changes you want to discuss at an appointment.
- Plan a manageable activity that gives your day some structure or enjoyment.
- Build in rest before you become exhausted, rather than treating rest as something you have to earn.
- Choose one reliable source of health information instead of repeatedly searching online.
Stay connected in ways that work for you
Illness can make it easier to withdraw from other people, especially if you are tired, breathless or worried about infection. But connection can be protective. A short phone call, message, online meeting or a gentle outing with someone you trust can make a real difference.
You do not have to explain every detail of aspergillosis. It can be enough to say: “I am having a difficult health day and would appreciate some company,” or “I cannot manage a long visit, but I would like to keep in touch.”
The Aspergillosis Support and Community page includes information about our online meetings and other ways to connect with people who understand some of the challenges of living with aspergillosis.
Be kind to your body and your energy
Your physical and mental wellbeing are closely linked. Gentle, regular routines can help, but they should be adapted to your health and energy—not based on what you think you “should” be able to do.
- Keep as regular a sleep routine as possible.
- Eat and drink regularly, particularly when symptoms or medication affect appetite.
- Include movement that is safe and realistic for you, such as a short walk, stretches, breathing exercises or a programme recommended by your physiotherapist.
- Make time for something absorbing or enjoyable: music, reading, gardening, crafts, a favourite programme or talking with someone you like.
- Notice whether alcohol, smoking, poor sleep or relentless activity are making your mood or symptoms harder to manage.
Make room for difficult thoughts
Trying to push away every worry can sometimes make it more persistent. It may help to name what is happening: “I am feeling frightened about my symptoms today,” or “I am worried because I do not yet have an answer.”
Talking to someone you trust can reduce the pressure. Some people find it helpful to write worries down, practise relaxation or mindfulness, or set aside a short, specific time to think through a concern rather than allowing it to take over the whole day.
If health news or social media leaves you more anxious, consider limiting it to a set time each day and using trustworthy sources. You do not need to follow every new story to be well informed.
Ask for support early
Please speak to your GP, respiratory team or another healthcare professional if low mood, anxiety, panic, poor sleep or loss of interest in everyday life is lasting, worsening or affecting how you manage. Support can include practical advice, talking therapies, medication where appropriate, or referral to local services.
The NHS Every Mind Matters website has practical tools and advice for managing stress, anxiety, sleep and low mood.
Urgent mental-health support
If you or someone else is in immediate danger, call 999 or go to A&E. For urgent mental-health support in England, call 111 or use NHS 111 online and select the mental-health option. You do not have to manage a crisis alone.
Further information
- Mental health and anxiety
- Aspergillosis support and community
- NHS Every Mind Matters
- NHS mental health information and support
Hope on the horizon: Novel antifungal treatments in development
For many people with aspergillosis, today’s antifungal medicines make a real difference. They can control infection, improve symptoms and help prevent further lung damage. However, treatment can also be difficult: medicines may cause side effects, interact with other drugs, be hard to absorb consistently, or become less effective if the fungus is resistant.
That is why researchers are developing new antifungal treatments. This is encouraging progress, but it is important to be clear about what it means: a medicine in development is not yet a treatment option for most people. It must first be tested carefully for safety, the right dose and whether it works better than, or alongside, existing treatment.
Key points
- Existing antifungal medicines remain the standard treatment for aspergillosis.
- New medicines may eventually offer more options where current treatment is unsuitable, ineffective or limited by resistance.
- Clinical trials are essential, but joining one is not right or possible for everyone.
- Never stop, reduce or change an antifungal medicine because you have read about a possible new treatment—speak to your specialist team first.
Why are new antifungals needed?
Aspergillosis is not one single illness. It includes allergic conditions such as ABPA, chronic pulmonary aspergillosis (CPA), aspergilloma and severe invasive infection. The right treatment depends on the type of aspergillosis, how active it is, a person’s underlying lung health and immune system, and the results of scans, blood tests and microbiology.
The azole antifungals—such as itraconazole, voriconazole, posaconazole and isavuconazole—are important treatments. They have helped many people live with and manage aspergillosis. Yet they can be challenging because:
- levels of some medicines vary between people, so blood-level monitoring may be needed;
- they can interact with other prescribed medicines, over-the-counter remedies and supplements;
- some people experience troublesome side effects or changes in liver blood tests;
- Aspergillus can sometimes be resistant to azole treatment;
- some people have complex illness that needs a different approach, combination treatment or specialist advice.
New treatments are being designed to work in different ways from older medicines. In time, this may provide alternatives for people who cannot tolerate an existing medicine, whose infection is resistant, or whose illness has not responded as hoped.
What is being developed?
There are several investigational antifungal medicines and approaches in development. Not all will become licensed treatments, and not every medicine being studied is aimed specifically at every form of aspergillosis.
Medicines with new targets
Most established antifungals work by disrupting parts of the fungal cell membrane or cell wall. Several newer medicines aim at different fungal processes. This matters because a different target may mean a medicine can still work when resistance or intolerance limits another option.
Olorofim is one example of a newer oral antifungal that has been studied for difficult-to-treat invasive fungal infections, including infections caused by Aspergillus. It works differently from azole medicines. Research has particularly focused on situations where established treatment is unsuitable or has not worked.
Fosmanogepix is another investigational antifungal with a different mechanism of action. It has been studied in serious invasive fungal infections and has attracted interest because of its activity against a range of fungi. Its eventual role, if licensed, will depend on the results of clinical studies and decisions by medicines regulators.
Weekly intravenous treatment: rezafungin
Rezafungin is a newer echinocandin antifungal given by intravenous infusion, usually once a week. Echinocandins work differently from azole medicines: they interfere with the fungal cell wall. Rezafungin is already used for some serious fungal infections, but its role in aspergillosis is still being researched.
A clinical study is assessing whether six months of rezafungin treatment can be helpful and safe for people with chronic pulmonary aspergillosis (CPA) who have limited treatment options. A once-weekly treatment could be particularly useful for some people who cannot take, absorb or tolerate long-term oral azoles. However, it remains a clinical-trial treatment for CPA rather than standard care.
Getting treatment directly to the lungs
Researchers are also exploring whether antifungal medicines can be delivered directly to the lungs by inhalation. Pulmazole, an inhaled formulation of itraconazole, was developed with this aim: high levels of medicine at the site of infection, with less medicine circulating around the rest of the body.
This approach is appealing, particularly for long-term lung conditions, but inhaled antifungal treatment is not currently routine care for aspergillosis. Pulmazole is best understood as an example of an important research direction rather than an available treatment. Other inhaled antifungal formulations have also been investigated.
Other medicines and treatment strategies are also being explored. These include new formulations, possible combination approaches and treatments designed to address resistant fungi. Research is active, but progress is rarely straightforward: studies may change, take longer than expected or show that a medicine is useful only for a particular group of patients.
What does “in development” actually mean?
Before a medicine can be routinely prescribed, it usually passes through several stages of research. Early studies look at safety and how the body handles the medicine. Later studies assess dose, side effects and whether it works in people with the infection it is intended to treat.
Even when early results are promising, researchers still need to establish important questions:
- Who is most likely to benefit?
- What dose is safest and most effective?
- How does it compare with current treatment?
- Does it work against resistant infection?
- What side effects, interactions and monitoring are needed?
- Can it be used safely with other treatments people may need?
Only after sufficient evidence has been reviewed can a regulator decide whether to license a medicine for a particular use. A medicine may be available in one country but not another, or only for a specific type of infection.
Clinical trials: a route to better treatment
Clinical trials are how new treatments become available. People who take part contribute to better care for future patients, and some may gain access to a treatment not otherwise available. However, a trial is not simply a way to obtain a new medicine.
Every study has strict eligibility criteria. These may relate to the type of aspergillosis, scan findings, fungal culture results, previous antifungal treatment, other medicines, liver or kidney function, and whether someone has another health condition. Some trials compare a new medicine with usual care; others do not provide the study medicine to every participant.
If you hear about a trial and wonder whether it may be relevant, ask your treating respiratory, infectious diseases or aspergillosis specialist. They can advise whether it is appropriate and, if needed, seek specialist or trial-centre advice. It is completely reasonable to ask—but it is equally reasonable for the answer to be that current treatment remains the better option for you.
What about off-label or unlicensed treatment?
Sometimes a specialist may consider an antifungal medicine outside its usual licence. This may be described as off-label use: the medicine is licensed, but not specifically for your type of aspergillosis, dose or treatment situation. This is not unusual in complex or rare diseases, but it requires careful specialist judgement, discussion of the uncertainty, and appropriate monitoring.
In exceptional circumstances, an investigational medicine may also be available through a clinical trial, a named-patient arrangement or an early-access programme. These routes are tightly controlled and are not a guarantee of treatment. They are usually considered only when standard options have been unsuitable, ineffective or cannot be used safely.
Whether any of these options is appropriate depends on your diagnosis, previous treatment, fungal test results, other health conditions and the potential balance of benefit and risk. Your specialist team can advise whether there is a realistic route worth exploring.
What this means for you now
News about new antifungal medicines can bring hope, particularly if you have had a difficult experience with treatment. It can also create uncertainty or make you question a medicine you are taking now. The most important point is that treatment decisions should be based on your current health, diagnosis and test results, not on headlines about a treatment that may still be years away from routine use.
If your current antifungal is helping, monitoring and review are part of making that treatment as safe and effective as possible. If you are struggling with side effects, taking other medicines, finding doses difficult, or worrying that treatment is not working, tell your team. There may be practical solutions, such as checking drug levels, reviewing interactions, changing the timing or formulation of a medicine, managing side effects, or considering an alternative treatment.
Do not feel that you have to “put up with” problems in silence. Equally, do not stop an antifungal suddenly unless a clinician has advised you to do so. A supported discussion with your specialist team is the best way to balance the benefits and risks of treatment.
Questions you may want to ask at an appointment
- What is the aim of my antifungal treatment at the moment?
- How will we know whether it is working?
- Do I need blood tests or antifungal drug-level monitoring?
- Could any of my other medicines, vitamins or supplements interact with it?
- What symptoms or side effects should I report promptly?
- Is there a different treatment approach if this medicine is not suitable for me?
- Are there any relevant clinical trials now or likely in the future?
Keeping hope realistic
There is genuine momentum in antifungal research. New medicines, better diagnostics and greater awareness of fungal disease all have the potential to improve care. But good care today still depends on timely diagnosis, expert interpretation of tests, careful monitoring and shared decisions between patients and their clinical teams.
The future is promising—not because every new medicine will be right for every person, but because more research should mean more informed choices when people need them.
This page is for general information and does not replace personalised medical advice. If you have concerns about your antifungal treatment, contact your prescribing clinical team or specialist.
Living with aspergillosis: managing stress, energy and change
A Thursday Session introduction
This article introduces next week’s Thursday Session: an informal conversation about finding a balance between taking good care of your health and protecting the parts of life that matter to you. You are very welcome to join in, or simply listen.
You can find details of the National Aspergillosis Centre’s regular online support meetings here.
Taking the condition seriously — without letting it take over
Many people describe two feelings that seem to pull in opposite directions.
One is the wish to fight the illness: to understand it, follow treatment, attend appointments, notice meaningful changes and do what they can to stay well.
The other is the need to accept that some symptoms, uncertainty or limits may remain.
These are not opposites. Acceptance does not mean giving up, ignoring symptoms or deciding that nothing can improve. It can mean recognising what is outside your control at the moment, while putting your energy into the things that are helpful and important to you.
That might include taking prescribed treatment, keeping active within your limits, resting when needed, staying connected with other people, and making room for interests, family, work or small everyday pleasures. The aim is not to manage everything perfectly. It is to develop a routine that supports your health without making illness the centre of every day.
Stress uses energy
Stress does not cause aspergillosis, and difficult symptoms are not “all in the mind”. But prolonged stress can make a long-term condition harder to live with.
When someone is worried for weeks or months, sleeping badly, managing caring responsibilities, facing money or work pressures, or constantly watching for symptoms, there may be little opportunity to recover. That can leave less energy for treatment routines, activity, eating well, social contact and the ordinary tasks of life.
A useful question is not simply, “How can I avoid stress?” Few of us can avoid it altogether. It may be more helpful to ask:
- Which things are draining my energy most at the moment?
- What helps me recover some of that energy?
- What is one useful thing I can do for my health today?
- What can wait until tomorrow?
Recovery is not laziness or failure. Rest, a short walk, a conversation, a hobby, time outdoors, music or a good routine before bed may all be part of managing a long-term condition well.
Finding a manageable pace
Some activities take energy but give something back: meeting a friend, gentle exercise, a rehabilitation session, a favourite pastime or a family event. Other demands can become overload, particularly when there is no time to rest afterwards.
It may help to plan rather than wait until exhaustion forces you to stop. This can mean breaking tasks into smaller parts, choosing priorities, allowing recovery time after a busy day and being realistic about what can fit into a week.
There will be days when the condition needs more attention, and days when it is reasonable to put it in the background. Both can be sensible.
Coping with change and uncertainty
It can be stressful when doctors use new language or when the plan changes. For example, people may hear terms such as colonisation, infection or microbiome.
These words do not necessarily mean that clinicians are less certain or that treatment has become less effective. Often, they reflect a more detailed understanding of what is found in samples and how it relates to the person’s symptoms.
A sputum sample may show bacteria or fungi that are present in the airways without causing a current deterioration; this is often called colonisation. An infection is considered in the wider clinical picture — including new or worsening symptoms, test results, scans and how the person is feeling.
It is always reasonable to ask:
- What does this result mean for me?
- Do you think this is colonisation or active infection?
- Why is this treatment recommended now?
- What changes should make me contact the team?
Clear questions can help turn uncertainty into a plan.
Support beyond medical treatment
Clinical care is essential, but people often need more than a prescription or test result. They may need time to talk, practical advice, reassurance, emotional support and a sense that they are being treated as a whole person.
Some people find peer support, counselling, relaxation, mindfulness or hypnotherapy helpful for stress, sleep, anxiety or coping with symptoms. These approaches may support wellbeing, but they do not replace prescribed treatment for suspected infection or worsening lung disease.
If you use supplements, herbal products or complementary remedies, tell your clinical team. Some products can interact with prescribed medicines, including antifungal treatment.
Patient voices and shared learning
Marcela also shared some early reflections today from the recent ERS/ELF conference, where patients and professionals came together to discuss how people with lung conditions can be partners in care, research and service improvement. We will publish a fuller report shortly.
It is a useful reminder that living well with a long-term condition is not only about medical treatment. Patients’ experience — including what helps, what creates stress and what support is missing — has an important place in shaping better care.
Join the conversation
Next week’s Thursday Session will explore:
Living with long-term illness: managing stress, energy and change
There are no right answers and no expectation to speak. You are welcome to share what has helped you, ask a question, or simply listen to others’ experiences.
Antifungal Medicines and Your Liver: Monitoring, Symptoms and Safe Use
Some antifungal medicines used to treat aspergillosis can affect the liver. This does not mean that liver damage is expected, or that treatment is unsafe. It means that antifungals need regular monitoring so that possible problems can be recognised early and managed safely.
For most people, treatment can continue successfully with the right dose, blood tests and communication between the patient, prescriber and specialist pharmacist.
If you feel worried about starting an antifungal
It is understandable to feel anxious when you read a long list of possible side effects. Antifungal medicines are powerful treatments, and they do need careful monitoring. But a side effect listed in the information leaflet is a possibility, not something that will happen to everyone.
Your clinical team has recommended treatment because they believe the likely benefit—controlling infection, reducing symptoms or preventing further lung damage—outweighs the risks in your situation. Blood tests, medicine reviews and antifungal drug levels are there to make treatment safer and to identify problems early.
If a medicine does not suit you, there are usually options: adjusting the dose, reviewing interactions, changing the formulation, trying another antifungal or agreeing a different treatment plan. You do not have to manage worrying symptoms alone, and reporting a possible side effect is not “making a fuss”.
The best starting point is usually to take the medicine as prescribed, attend monitoring appointments and tell your team honestly about any concerns. A planned, supported decision is safer than avoiding treatment because of fears about what might happen.
Key points
- Azole antifungals, including itraconazole, voriconazole, posaconazole and isavuconazole, can sometimes affect liver blood tests.
- Regular blood tests are a safety measure. They help clinicians detect change early, often before you feel unwell.
- Do not stop, reduce or restart an antifungal medicine without advice from the team prescribing it.
- Tell your team about every medicine, supplement and herbal product you take. Interactions and unrecognised ingredients can matter.
- Contact your healthcare team promptly if you develop symptoms that could suggest a liver problem, especially yellowing of the skin or eyes, dark urine, pale stools, severe nausea or unusual tiredness.
Why does liver safety matter with antifungal medicines?
The liver processes many medicines and helps remove them from the body. Azole antifungals are effective treatments for several forms of aspergillosis, but they can be difficult for the body to handle and can interact with many other medicines.
Some people develop changes in liver blood tests after starting an antifungal or after a dose change. These changes are often mild and reversible. Sometimes the result simply needs repeating; sometimes it prompts a review of the dose, a check for another cause or a switch to a different medicine.
The important message is that monitoring allows the clinical team to make a planned, early decision. It is not a sign that treatment has failed.
What blood tests are used?
You may hear these called liver function tests, or LFTs. They are a group of blood tests that can show whether the liver is irritated, under stress or having difficulty processing substances.
Results may include enzymes such as ALT, AST and ALP, as well as bilirubin. Your team looks at the overall pattern and how it has changed over time; one result on its own does not always tell the full story.
Abnormal liver tests do not automatically mean permanent liver damage. They can be affected by medicines, alcohol, infection, fatty liver disease, gallbladder problems and many other conditions. This is why clinicians may repeat the test or investigate further before changing treatment.
How often will I need monitoring?
The timing depends on the antifungal medicine you take, your dose, your other health conditions, any previous liver problems and whether you are taking medicines that interact with antifungals.
Blood tests are commonly done before treatment starts, after starting or changing a dose, and then at intervals during longer-term treatment. You may also have antifungal blood-level testing. This shows how much medicine is in your bloodstream and can help the team balance effectiveness against side effects.
Attend requested blood-test appointments, even when you feel well. Early changes are often found on a blood test before symptoms develop.
Symptoms to report promptly
Many people have no symptoms even if a liver test changes. However, contact your GP, specialist team or pharmacist promptly if you develop:
- yellowing of the eyes or skin (jaundice);
- dark urine or unusually pale stools;
- new or persistent nausea, vomiting or loss of appetite;
- unusual tiredness, weakness or feeling generally unwell;
- itching without an obvious cause;
- pain or tenderness under the ribs on the upper-right side of your abdomen.
These symptoms can have many causes and do not necessarily mean that an antifungal is responsible. They are worth reporting so that your team can decide whether blood tests or other assessment are needed.
Seek urgent medical help if you become severely unwell, confused, very drowsy, develop rapidly worsening jaundice, or have any other medical emergency.
Do not stop treatment on your own
It can be worrying to read about liver side effects, particularly when you are taking an antifungal for months or years. But suddenly stopping treatment can allow fungal disease to worsen and may leave fewer treatment options.
If blood tests change or you develop possible side effects, the team may:
- repeat blood tests sooner;
- check your antifungal blood level and the timing of your dose;
- review other medicines, alcohol use, supplements or another possible cause;
- reduce, pause or change treatment under supervision; or
- switch to a different antifungal where appropriate.
These are normal safety decisions. They are tailored to the balance between controlling aspergillosis and protecting your overall health.
Medicines, supplements and interactions
Azole antifungals can interact with many commonly prescribed medicines, including some inhaled and oral steroids, heart-rhythm medicines, blood thinners, pain medicines and treatments for seizures or mental health conditions.
Always tell your prescriber and pharmacist about:
- prescription medicines from any clinic or hospital;
- medicines bought from a pharmacy or supermarket;
- cold and flu remedies, painkillers and indigestion treatments;
- vitamins, bodybuilding products, herbal remedies and supplements; and
- anything you have recently started, stopped or changed.
“Natural” does not automatically mean safe. Some supplements and herbal products can affect the liver, interact with medicines or contain ingredients that are not obvious from the label. There is no reliable “liver detox” product that protects the liver from antifungal side effects.
If you are considering a supplement, ask your pharmacist or specialist team first—especially if it claims to cleanse, detoxify or support the liver.
Alcohol and antifungal treatment
Alcohol can affect the liver and may make it harder to interpret liver-test changes. The safest approach is to discuss your own alcohol use with the clinician prescribing your antifungal, particularly if you have previously had abnormal liver tests, known liver disease or take several medicines.
Do not assume that a product is safe simply because it is low alcohol, occasional or sold as a supplement. If you have been advised to avoid alcohol with your treatment, follow that advice.
Everyday liver health
You do not need a special “liver diet”. The most useful foundations are the same ones that support overall health:
- eat a balanced diet that you can maintain;
- stay active within your abilities and physiotherapy advice;
- aim for a healthy weight where this is appropriate for you;
- avoid smoking;
- follow advice about vaccination, including hepatitis vaccination if it is recommended for your circumstances; and
- seek help for alcohol use if it is becoming difficult to control.
Be cautious with paracetamol and combination cold-and-flu medicines. Several products may contain paracetamol, making it easy to take more than intended. Check with a pharmacist or clinician if you have liver disease, drink alcohol regularly, are underweight, or are unsure which pain relief is safe for you.
Questions to ask at your next appointment
- How often should I have liver blood tests?
- Do I need antifungal blood-level monitoring?
- Which symptoms should I report to your team, and who should I contact?
- Are any of my medicines or supplements likely to interact with my antifungal?
- Is alcohol safe for me while taking this medicine?
For more information about doses, blood levels, interactions and specialist care, see Antifungal Medicines: Dosing, Monitoring, and the Role of Specialist Care.
This information is for general education and does not replace advice from the team prescribing your antifungal treatment. Your monitoring plan should be based on your medicine, dose, test results and individual medical history.
Stopping Antifungal Treatment for CPA: Relapse, Monitoring and What Happens Next
For people with chronic pulmonary aspergillosis (CPA), taking antifungal treatment for months or years can be demanding. You may be dealing with side effects, blood tests, drug-level monitoring, interactions with other medicines and the worry of what will happen if treatment is reduced or stopped.
It is natural to ask: “Has the infection settled enough for me to stop?” and “If it comes back, what then?”
There is no single answer that applies to everyone. Some people can stop antifungal treatment safely after a period of stability. Others need treatment for longer, sometimes indefinitely. The decision is based on the whole clinical picture—not one blood result, scan or time period.
Key points
- Do not stop or reduce an antifungal medicine without discussing it with your specialist team.
- CPA can become active again after treatment stops, but this does not happen to everyone.
- Stopping treatment is usually a planned decision, followed by clinical review, blood tests and sometimes imaging.
- If CPA returns, there are often further treatment options. A relapse is not a personal failure.
Why might antifungal treatment be stopped?
Antifungal medicines are used in CPA to control fungal infection, reduce symptoms and help prevent further lung damage. Treatment is often continued for at least several months, but the right duration varies greatly.
Your team may consider stopping treatment when CPA appears stable and the balance of benefit and burden has changed. For example:
- symptoms have improved or remained stable;
- scans show that cavities, nodules or areas of inflammation are stable or improving;
- blood tests and fungal markers support clinical stability;
- there is no evidence of ongoing active infection on sputum or other samples, where these are available;
- you are experiencing significant side effects, interactions or difficulty tolerating treatment;
- there is a concern about antifungal resistance or the medicine is no longer suitable.
Sometimes treatment is stopped because a person has reached a stable remission. At other times, it is stopped because continuing the medicine is causing more harm or difficulty than benefit. These are different situations, which is one reason relapse risk cannot be reduced to a simple percentage.
Can CPA return after treatment stops?
Yes, CPA can become active again after antifungal treatment is stopped. This may be described as relapse, recurrence or reactivation. However, it is important not to assume that this will happen to you.
An earlier National Aspergillosis Centre study reviewed 102 people whose antifungal treatment had been stopped. CPA returned in around one in five people during follow-up. This is useful evidence, but it should not be used as a personal prediction. The people in the study had different forms and severity of CPA, different underlying lung conditions, and different reasons for stopping treatment. Many had treatment stopped because of side effects or resistance rather than because the infection had fully settled.
Your individual outlook may be better or worse than the average in any study. Your specialist will use your own history, symptoms, scans, test results and treatment experience to guide the discussion.
What can make relapse more likely?
Doctors cannot always predict whether CPA will return. However, some features may suggest a higher risk and may influence how cautiously treatment is reduced or stopped.
These can include:
- More widespread lung involvement, particularly disease affecting both lungs or several lobes;
- Aspergilloma or persistent cavities, especially if there is continuing evidence of active disease around them;
- Underlying lung damage, such as bronchiectasis, COPD, previous tuberculosis, fibrosis or other structural lung disease;
- Other lung infections, including bacterial infection or non-tuberculous mycobacterial infection;
- Difficulty reaching a stable response during previous treatment;
- Antifungal resistance, poor absorption or treatment intolerance, which can limit the options available;
- Immune suppression or another health condition that makes infection more difficult to control.
These are not rules. Someone with a cavity or disease in both lungs may still remain stable after treatment stops. Someone whose scans look relatively reassuring may still need further treatment later. The purpose of identifying risk factors is to plan sensible monitoring—not to create unnecessary anxiety.
What does a planned stop usually involve?
Stopping treatment should be a shared decision. Beforehand, your team will usually review whether there is enough evidence that CPA is stable and whether the potential benefits of continuing still outweigh the downsides.
The plan may include:
- a review of cough, breathlessness, fatigue, chest discomfort, weight and general wellbeing;
- blood tests, which may include inflammatory markers, liver tests and Aspergillus-related tests where relevant;
- sputum testing or other microbiology if you are producing phlegm;
- a chest X-ray or CT scan, depending on your circumstances and previous disease;
- an agreed follow-up appointment and clear advice about when to make contact sooner.
Follow-up matters because CPA can change gradually. Monitoring gives your team the chance to spot a concerning pattern early, before symptoms become severe or lung damage progresses.
Symptoms to report after stopping treatment
Many symptoms of CPA overlap with other lung conditions, infections and everyday fluctuations in health. A single bad day does not necessarily mean that CPA has returned. But it is sensible to contact your clinical team if you notice a persistent or unexplained change, particularly if it is getting worse.
Report:
- increasing cough, sputum or chest discomfort;
- worsening breathlessness beyond your usual pattern;
- new or increasing tiredness, fevers, sweats or loss of appetite;
- unexplained weight loss;
- coughing up blood, even in a small amount;
- a new chest infection that is not improving as expected;
- any concern that you are becoming less able to manage normal daily activity.
Seek urgent medical advice for significant coughing up of blood, severe or rapidly worsening breathlessness, severe chest pain, collapse, confusion or feeling acutely unwell.
If CPA returns, what happens next?
A return of symptoms or a worrying test result does not automatically mean you will need to restart exactly the same treatment immediately. Your team will first assess what has changed and whether CPA is the cause. They may compare scans, repeat blood or sputum tests, look for a bacterial infection or another explanation, and review your medicines.
If CPA appears active again, options may include:
- restarting the previous antifungal if it was effective and remains safe for you;
- using a different antifungal medicine or formulation;
- checking antifungal levels, absorption and medicine interactions;
- testing a fungal sample for antifungal resistance where possible;
- treating a co-existing bacterial or other respiratory infection;
- seeking input from a specialist aspergillosis, respiratory or infectious diseases team.
For some people, long-term antifungal treatment is the best way to keep CPA controlled. For others, treatment can be used in periods when the disease is active, with careful observation at other times. The aim is not to keep everyone on treatment forever; it is to find the safest and most effective plan for each person.
Managing the worry of stopping
It can feel unsettling to stop a medicine that has become part of your routine, even when it has caused side effects. You may worry that symptoms will return or that you will not notice a change quickly enough. These feelings are understandable.
It can help to leave an appointment with a clear plan:
- What signs should I look out for?
- Who should I contact if I am worried?
- When will my next blood test, scan or review be?
- What would make us restart treatment?
- Are there practical ways to manage my underlying lung condition and reduce the risk of chest infections?
You do not have to wait until you feel very unwell to raise a concern. Equally, try not to interpret every cough, tired day or chest infection as definite relapse. Your team can help put changes into context.
Questions to ask at your appointment
- What evidence suggests my CPA is stable enough to consider stopping treatment?
- What is the main reason for stopping now: stability, side effects, resistance or another issue?
- What features of my CPA affect my own risk of relapse?
- How will I be monitored after stopping?
- Which symptoms should prompt me to contact the team?
- What options would we consider if my CPA becomes active again?
- Can we review my other medicines, supplements and inhalers for interactions?
The bottom line
Stopping antifungal treatment for CPA is possible for some people, but it needs individual planning and follow-up. A period off treatment can be a positive step when the disease is stable or the burden of treatment is too great. It is not an all-or-nothing decision: if CPA becomes a