The Power of Keeping a Health Diary When You Have Aspergillosis

Last reviewed: June 2026
Audience: People living with aspergillosis, families and carers
Key points
- A health diary can help you understand symptoms, triggers and changes over time.
- It can be especially useful if you experience fatigue, brain fog or memory problems.
- It can make clinic appointments more focused and productive.
- A diary may show progress that is hard to notice day to day.
- The best diary is simple, quick and realistic to keep using.
Contents
- Why keep a health diary?
- How it can help with aspergillosis
- Brain fog and memory
- Spotting patterns and triggers
- Using your diary at appointments
- The psychological benefit
- Simple diary template
- Common questions
- When to seek medical advice
Why keep a health diary?
Living with aspergillosis often means symptoms change from day to day. Some days may be manageable. Others may involve more coughing, breathlessness, fatigue, sinus symptoms, poor sleep or medication side effects.
Because these changes can happen gradually, it can be difficult to remember exactly when symptoms started, whether they are getting better or worse, or what might have triggered them.
A health diary gives you a simple record of what is happening over time. It can help you, your family and your healthcare team see patterns that may not be obvious from memory alone.
How a diary can help with aspergillosis
People with aspergillosis may find it useful to record:
- Cough
- Breathlessness
- Fatigue
- Sputum or phlegm
- Wheeze
- Sinus symptoms
- Sleep quality
- Exercise or walking distance
- Mood and wellbeing
- Medication changes
- Possible side effects
You may also want to note possible triggers, such as damp or mould exposure, pollen, dusty environments, changes in weather, respiratory infections, stress, travel or changes in medication.
Brain fog and memory
Many people with long-term lung conditions describe episodes of brain fog. This may feel like forgetfulness, poor concentration, difficulty finding words, feeling mentally slower than usual, or feeling as though your head is “empty”.
Brain fog can have many possible causes, including fatigue, poor sleep, infection, inflammation, stress, anxiety, pain, medication side effects, low oxygen levels or other health problems.
A diary acts as an external memory. Instead of trying to remember when something changed, you can look back and see what was happening at the time.
Spotting patterns and triggers
| What you record | What it may help show |
|---|---|
| Symptoms | Whether cough, breathlessness or fatigue are improving or worsening |
| Sleep | Whether poor sleep is linked to worse symptoms |
| Exercise | What level of activity is manageable |
| Weather | Whether heat, humidity, cold air or storms affect symptoms |
| Environment | Possible links with damp, mould, dust or pollen |
| Medication | Possible benefits, side effects or changes during dose reduction |
| Infections | Early warning signs or repeated patterns |
Using your diary at appointments
Healthcare professionals may ask questions such as:
- When did your symptoms start?
- Are they getting better or worse?
- Have you noticed any triggers?
- Have you changed any medication recently?
- How far can you walk now compared with before?
- Have you had any infections or courses of antibiotics?
These questions are not always easy to answer from memory, especially when you are tired or anxious. A diary can help you give clearer, more accurate information.
You may find it useful to bring a short summary to your appointment, such as:
- Three things that have improved
- Three things that have worsened
- Any medication changes
- Your main questions for the appointment
Sometimes the diary tells a different story
When you have had a difficult few days, it can feel as though nothing is improving. A diary may show that the wider picture is more encouraging.
For example, you may feel:
“Nothing has changed.”
But your diary may show:
- You are walking further than three months ago
- You are sleeping better
- You have had fewer chest infections
- You are coughing less at night
- You are doing more social activities
Equally, a diary can show gradual deterioration that might otherwise be missed. Both types of information can be useful.
The psychological benefit
Chronic illness can feel unpredictable. A diary can help restore a sense of control by changing the question from:
“Why do I feel awful?”
to:
“What changed recently?”
This can reduce uncertainty and help you feel more involved in your care.
A diary can also become a record of resilience. It may include difficult days, but it can also capture walks completed, holidays taken, family events attended, personal goals reached and challenges overcome.
Keep it simple
Many people stop keeping a diary because they try to record too much. A simple diary is usually more useful than a complicated one.
A daily entry might take less than two minutes and include:
- Symptoms, scored from 0 to 10
- Energy level, scored from 0 to 10
- Sleep quality
- Exercise or activity
- Medication changes
- Anything unusual
Consistency matters more than detail.
Paper, phone or app?
There is no single correct way to keep a diary. You could use:
- A notebook
- A printed diary sheet
- A phone notes app
- A calendar
- Voice notes
- A spreadsheet
- A symptom tracking app
- A fitness tracker or smartwatch
The best diary is the one you will actually use.
Simple diary template
Daily health diary
Date: __________________________
Symptoms, 0–10
Cough: ______
Breathlessness: ______
Fatigue: ______
Sinus symptoms: ______
Overall wellbeing: ______
Sleep
Hours slept: ______
Sleep quality, 0–10: ______
Activity
Exercise or activity today:
__________________________________________________
Medication
Any medication changes or side effects?
__________________________________________________
Notes
Anything unusual today?
__________________________________________________
__________________________________________________
Daily Diary - PDF downloadable
Common questions
Do I need to write every day?
No. Some people write daily. Others only record changes, flare-ups, medication changes or important events.
What if I forget for a few days?
That is very common. Simply restart when you remember. A diary does not have to be perfect to be useful.
Should I record test results?
You can if you find it helpful. Some people record blood results, oxygen saturations, lung function, weight, clinic letters or medication levels. Do not worry if this feels too much. A simple symptom diary is still useful.
Can a diary replace medical advice?
No. A diary is a tool to support conversations with your healthcare team. It should not be used to diagnose or treat symptoms without medical advice.
When to seek medical advice
Seek medical advice promptly if you experience:
- Sudden or significant worsening of breathlessness
- Coughing up large amounts of blood
- Persistent fever
- Severe chest pain
- New confusion or rapidly worsening brain fog
- Weakness, speech problems, facial drooping or visual changes
- Symptoms that are worsening quickly or feel unusual for you
If you are unsure, contact your healthcare team, NHS 111, your GP, or emergency services depending on severity.
Further information
- Living with aspergillosis
- Fatigue and aspergillosis
- Exercise and aspergillosis
- Mental wellbeing and aspergillosis
Author and review information
This article is provided for general educational support for people affected by aspergillosis. It is not a substitute for medical advice from your own healthcare team.
Prepared for: Aspergillosis.org
Last reviewed: June 2026
Exercise and Aspergillosis: How Physical Activity Can Improve Breathing, Strength and Wellbeing
Key points
- Exercise is one of the most helpful non-drug tools for many people living with aspergillosis.
- Regular physical activity can improve breathlessness, strength, stamina, mood, confidence and quality of life.
- The best approach is usually little and often, rather than occasional intensive exercise.
- Do not compare yourself with others. Everyone has different lungs, treatments, fitness levels and limits.
- Respiratory physiotherapists and pulmonary rehabilitation programmes can help you exercise safely and confidently.
- Walking, cycling, swimming, rowing, gentle yoga, Tai Chi and singing can all be useful, depending on the individual.
- People with aspergillosis should take extra care around mould-heavy environments such as compost, leaf mould, sheds and building dust.
Contents
- Why exercise matters in aspergillosis
- The activity and breathlessness cycle
- Benefits of exercise
- Specific issues for aspergillosis patients
- How to start safely
- Activities that may help
- Pulmonary rehabilitation and physiotherapy
- The golden rule: little and often
- What clinicians want patients to know
- Real-life examples
- When to seek medical advice
- Frequently asked questions
- Related articles and further support
Why exercise matters in aspergillosis
Living with aspergillosis can be physically and emotionally challenging. Breathlessness, coughing, fatigue, disturbed sleep, medication side effects and reduced confidence can all make it tempting to become less active.
Unfortunately, becoming less active can make symptoms feel worse over time. Muscles weaken, fitness falls, balance may worsen and everyday activities such as walking, climbing stairs, shopping or playing with grandchildren can become harder.
This process is often called deconditioning. It does not mean the symptoms are imaginary. It means the body has lost some of its ability to cope with activity.
The encouraging news is that exercise can help reverse part of this process.
Exercise cannot cure aspergillosis, but it can help the body use oxygen more efficiently, strengthen muscles, improve confidence and make daily life easier.
Importantly, people may feel better and do more even when their lung function tests do not change very much.
The activity and breathlessness cycle
Many people with chronic lung disease become trapped in a difficult cycle:
The deconditioning cycle
Breathlessness → Less activity → Loss of fitness → More breathlessness → Even less activity
Exercise helps by creating a healthier cycle:
The rebuilding cycle
Gentle activity → Stronger muscles → More confidence → Easier daily tasks → Better quality of life
This is why small, regular activity can be so powerful. The aim is not to force the lungs to work harder. The aim is to help the whole body work better.
Benefits of exercise
Improved breathlessness
Exercise may make you breathless while you are doing it, but regular activity often reduces breathlessness during everyday tasks. This happens because muscles become stronger and more efficient, so they need less effort to perform the same activity.
More energy
Many patients report feeling less tired once they build a regular routine. Exercise uses energy in the short term, but over time it can improve stamina and reduce the effort needed for daily life.
Stronger muscles
Long-term illness, hospital admissions, inactivity and corticosteroid treatment can all contribute to muscle weakness. Strength exercises can help rebuild leg strength, improve balance and support independence.
Better mood and confidence
Living with aspergillosis can affect mental wellbeing. Exercise can help reduce anxiety, stress and low mood. It can also restore a sense of control and achievement.
Improved bone health
This is especially important for people who have taken long-term corticosteroids. Weight-bearing activity and strength training can help protect bone strength and reduce the risk of osteoporosis.
Better daily function
For many patients, the most important benefit is practical: being able to walk further, climb stairs more easily, go shopping, travel, garden, socialise or enjoy family life with more confidence.
Specific issues for aspergillosis patients
Avoiding high mould exposure
Aspergillus is commonly found in soil, compost, decaying vegetation, damp buildings and dust. Some activities can expose people to large numbers of fungal spores.
Activities that may increase exposure include:
- Handling compost
- Turning soil
- Clearing leaf piles
- Wood chipping
- Spreading bark or mulch
- Cleaning sheds, garages, lofts or basements
- Working around mouldy materials
- Construction or demolition environments
Outdoor exercise such as walking, cycling and running is generally encouraged. However, it is sensible to avoid places where mould, compost, dust or decaying vegetation are being heavily disturbed.
Some people may choose to wear a well-fitting FFP2 or FFP3 mask for unavoidable dusty or mould-heavy tasks, but avoidance is usually better where possible.
Haemoptysis: coughing blood
People with Chronic Pulmonary Aspergillosis (CPA), lung cavities or aspergillomas may sometimes cough blood. This is called haemoptysis.
If you have recent, recurrent or significant haemoptysis, discuss exercise with your respiratory team. Most routine activity remains safe for many people, but vigorous exertion may need to be paused or modified during periods of active bleeding.
Oxygen levels
Some people with aspergillosis also have bronchiectasis, Chronic Obstructive Pulmonary Disease (COPD), fibrosis, previous tuberculosis damage or other lung scarring. In these situations, oxygen levels may fall during exertion even when resting oxygen levels are normal.
If breathlessness feels out of proportion, or if you notice unusually low oxygen saturations during activity, discuss this with your respiratory team. You may benefit from an exercise assessment or pulmonary rehabilitation referral.
Fatigue and boom-and-bust activity
Aspergillosis-related fatigue can be different from normal tiredness. It may be influenced by chronic inflammation, active infection, poor sleep, anxiety, medication side effects and reduced fitness.
Many patients experience a boom-and-bust pattern:
Good day → Do too much → Several days recovering
Regular, steady activity is usually more helpful than occasional bursts of intensive effort.
Steroid-related muscle weakness
People who have taken long-term corticosteroids may develop muscle weakness, particularly around the thighs and hips. This can make standing from a chair, climbing stairs and walking uphill more difficult.
Strength exercises such as sit-to-stands, step-ups and resistance band work can be particularly helpful.
Adrenal insufficiency
Some patients who have used long-term corticosteroids develop adrenal insufficiency. These patients should understand their sick day rules and discuss unusually strenuous exercise, endurance events or major hikes with their healthcare team.
Most routine gentle or moderate exercise is safe, but unusually demanding activity may require additional planning.
Asthma, ABPA and exercise symptoms
Many people with Allergic Bronchopulmonary Aspergillosis (ABPA) also have asthma. Exercise can sometimes trigger wheeze, cough or chest tightness.
This does not usually mean exercise should be avoided. Good asthma control, appropriate inhaler use, gradual warm-up and pacing can make a major difference. Speak to your healthcare team if exercise regularly triggers asthma symptoms.
How to start safely
Start from where you are
Your starting point is your starting point. It does not matter what someone else can do. If you can only walk for two or three minutes, that is still a valid place to begin.
Use the talk test
During moderate exercise, you should usually be able to speak in short sentences. If you cannot speak at all, you may be pushing too hard.
Build gradually
Small increases are usually safer and more sustainable than sudden changes. For example, increasing a walk from five minutes to six or seven minutes may be more helpful than trying to double it immediately.
Plan rest periods
Rest is not failure. Many people with lung disease do better with short bursts of activity separated by planned rests.
Track progress gently
Some patients find it motivating to keep a simple record of walks, steps, strength exercises or how breathless they feel. The aim is encouragement, not pressure.
A simple beginner example
Example starter plan
- Week 1–2: Walk for 5 minutes most days, or less if needed.
- Week 3–4: Add one or two minutes when comfortable.
- Week 5–6: Add gentle strength exercises, such as sit-to-stands.
- Ongoing: Continue gradual increases, with rest days when needed.
This is only an example. Some people will need to start lower, while others may safely start higher.
Activities that may help
The best exercise is usually the one you enjoy and can keep doing regularly.
Walking
Walking is one of the simplest and most effective activities. It requires no special equipment, can be adapted to most fitness levels and is easy to build gradually.
Cycling
Cycling, including use of a stationary exercise bike, can improve stamina while placing less strain on the joints than running.
Swimming
Swimming can be helpful because the water supports body weight. However, some people with asthma find chlorinated pools trigger symptoms.
Rowing
Rowing machines can provide both cardiovascular and strength benefits. Start gently and focus on technique.
Strength training
Strength training does not have to mean heavy weights. Useful exercises may include:
- Sit-to-stands from a chair
- Step-ups
- Wall push-ups
- Resistance bands
- Light hand weights
Gentle yoga and Tai Chi
Many patients enjoy gentle yoga or Tai Chi because they combine movement, balance, breathing awareness, posture and relaxation. Chair-based versions may be useful for people with reduced mobility.
Singing
Singing may not sound like exercise, but many people with lung conditions find it helpful. It can support breathing control, posture, confidence, social connection and respiratory muscle coordination.
Some patients enjoy local choirs or Singing for Lung Health groups.
Pulmonary rehabilitation and physiotherapy
You do not have to do this alone.
A respiratory physiotherapist can help assess your current ability and design a programme that suits your symptoms, fitness level and goals.
A specialist physiotherapist may help with:
- Breathlessness management
- Pacing strategies
- Strength and stamina building
- Airway clearance techniques where appropriate
- Confidence around movement
- Safe return to activity after illness
Pulmonary rehabilitation
Pulmonary rehabilitation is a structured programme that usually combines supervised exercise, education, breathing techniques and self-management advice.
Many people with chronic lung disease describe pulmonary rehabilitation as one of the most helpful interventions they have received.
If you have ongoing breathlessness, reduced exercise tolerance or loss of confidence, ask your GP, respiratory consultant, specialist nurse or physiotherapist whether pulmonary rehabilitation may be suitable for you.
The golden rule: little and often
Exercise with aspergillosis: the golden rule
Little and often is usually better than a lot all at once.
Do not compare yourself with other people, including other aspergillosis patients.
Everyone has different lungs, different treatments, different ages and different levels of fitness.
Focus on your own starting point and your own progress.
Do not try to keep up with others. You do you.
One of the biggest traps is comparing yourself with other patients. Someone else may complete a long-distance walk, climb a mountain, run a race or cycle hundreds of miles. That can be inspiring, but it should not become your target.
Instead, ask yourself:
Am I a little stronger, fitter or more confident than I was a few months ago?
Success may mean:
- Walking for five minutes when previously you could only manage three
- Climbing stairs more comfortably
- Shopping with less breathlessness
- Doing light gardening safely
- Enjoying a holiday more easily
- Playing with children or grandchildren
- Needing fewer rests during ordinary daily tasks
These achievements matter.
For most people living with aspergillosis, consistency beats intensity.
What clinicians want patients to know
Exercise is not about pushing through at all costs
Healthcare professionals usually want patients to remain as active as safely possible, but that does not mean ignoring symptoms or forcing yourself to keep up with others.
The safest approach is usually to build gradually, pace yourself and ask for help when symptoms change.
Exercise should support your life, not punish your body.
Real-life examples
The person who walks five minutes a day
For someone recovering from illness or a hospital admission, a five-minute daily walk may be a major achievement. If that becomes six minutes, then eight minutes, that is progress.
The person who completes a long-distance walk
Some people with aspergillosis manage major challenges such as long-distance walking routes. These stories can be inspiring, but they are not a standard everyone else must meet.
The person who joins a singing group
For some patients, a singing group may be more enjoyable and sustainable than a gym. Singing can support breathing control and confidence while also providing social contact.
The person who returns to gardening carefully
Gardening can be enjoyable and active, but compost, leaf mould and disturbed soil may contain high levels of fungal spores. Some patients adapt by avoiding compost handling, asking for help with mould-heavy tasks, wearing protective masks where appropriate, and choosing lower-risk gardening activities.
When to seek medical advice
Stop exercising and seek medical advice if you experience:
- Chest pain
- Severe or unusual breathlessness
- Dizziness or fainting
- Significant haemoptysis, meaning coughing blood
- Sudden worsening of symptoms
- New palpitations or heart rhythm symptoms
- Oxygen levels much lower than usual, if you monitor them
- Exercise tolerance that suddenly falls without an obvious reason
Always speak to your healthcare team if you are unsure whether exercise is safe for you, especially if your symptoms have recently changed.
Frequently asked questions
Can I exercise if I have aspergillosis?
Yes, many people with aspergillosis benefit from regular physical activity. Exercise should be adapted to your symptoms, fitness level and medical conditions. Ask your healthcare team for advice if you have severe breathlessness, recent haemoptysis or unstable symptoms.
Can exercise improve breathlessness?
Yes. Exercise can improve muscle efficiency, stamina and confidence. This can reduce breathlessness during everyday activities, even if lung function test results do not change significantly.
What is the best exercise for Allergic Bronchopulmonary Aspergillosis?
There is no single best exercise for Allergic Bronchopulmonary Aspergillosis. Walking, cycling, swimming, gentle yoga, strength training and pulmonary rehabilitation can all be helpful. The best activity is one you can do safely and regularly.
Can pulmonary rehabilitation help aspergillosis patients?
Many people with chronic respiratory symptoms, bronchiectasis or reduced exercise tolerance benefit from pulmonary rehabilitation. It combines supervised exercise, education, breathing techniques and self-management support.
Should people with aspergillosis avoid gardening?
Not necessarily, but some gardening activities can expose people to high levels of Aspergillus spores. Handling compost, turning soil, clearing leaves and working with mulch may carry higher exposure. Lower-risk gardening activities may be more suitable for some patients.
Can exercise help steroid-related muscle weakness?
Yes. Strength exercises can help rebuild muscle strength lost through long-term corticosteroid treatment, illness or inactivity. Simple exercises such as sit-to-stands, step-ups and resistance bands can be useful.
Is singing useful for people with lung disease?
Many people with lung disease find singing helpful for breathing control, posture, confidence and social connection. Some areas offer Singing for Lung Health groups.
Should I exercise when I am tired?
Gentle movement may help on some tired days, but severe fatigue may mean your body needs rest. Pacing is important. Try to avoid repeated boom-and-bust cycles where you do too much on a good day and then need several days to recover.
Take-home message
Exercise is one of the most powerful tools available to help people living with aspergillosis maintain independence, strength and quality of life.
Move more, but move at your own pace.
Find something you enjoy.
Ask for help when you need it.
Little and often beats heroic efforts.
Do not compare yourself with others.
You do you.
Related articles
You may also find these aspergillosis.org articles helpful:
- Why Am I Breathless When My Oxygen Levels Are Normal?
- Physiotherapy for Aspergillosis
- Living with Aspergillosis
- Managing Fatigue in Aspergillosis
- Steroids and Adrenal Insufficiency
- Bronchiectasis and Aspergillosis
- What is Allergic Bronchopulmonary Aspergillosis (ABPA)?
- What is Chronic Pulmonary Asprgillosis (CPA)?
Further support and information
Author and review information
Author: Graham Atherton, National Aspergillosis Centre
Medical review: National Aspergillosis Centre Clinical Team
Last reviewed: June 2026
This article provides general information and should not replace advice from your own healthcare team.
Why Do People With ABPA Usually Have to Try Steroids and Antifungals Before Biologics?
Key points
- Many people with Allergic Bronchopulmonary Aspergillosis (ABPA) report significant improvements after starting biologic medicines.
- Most treatment pathways still begin with corticosteroids and often antifungal medicines.
- Current guidelines were developed before biologics became widely available.
- Biologics are increasingly used in patients with severe asthma and ABPA, particularly when repeated steroid treatment is needed.
- Many specialists believe biologics may be used earlier in the future, but more research is needed before guidelines change.
Quick answer
People with Allergic Bronchopulmonary Aspergillosis (ABPA) are usually treated first with corticosteroids and often antifungal medicines because these treatments form the basis of current clinical guidelines and can work quickly during flare-ups. Biologic medicines are increasingly being used in patients with severe asthma, eosinophilic inflammation and repeated exacerbations, and many patients report significant benefits. Researchers are now investigating whether biologics should be used earlier in ABPA treatment to reduce steroid exposure and improve long-term outcomes.
Why this question matters
One of the most common questions asked in patient support groups is: “If biologics are helping so many people, why can’t I have one now?”
It is a reasonable question. Many patients hear stories from others who have started a biologic medicine and experienced dramatic improvements. Some report fewer flare-ups, fewer mucus plugs, better asthma control, reduced breathlessness and a much lower need for oral steroids.
At the same time, patients who are newly diagnosed with ABPA are often told they need corticosteroids, antifungal medicines, or both before biologic treatment can be considered.
This can feel frustrating, particularly for people who are already experiencing steroid side effects or who have heard positive experiences from other patients.
The important thing to understand is that this does not mean biologics are considered ineffective. Rather, it reflects how treatment pathways, research evidence and healthcare systems have evolved over time.
What are biologics?
Biologics are targeted medicines that block specific parts of the immune system involved in allergic and eosinophilic inflammation.
Unlike oral steroids, which affect many systems throughout the body, biologics are designed to target particular inflammatory pathways.
Examples include:
Many patients with ABPA also have severe asthma. Because of this overlap, biologics originally developed for severe asthma are increasingly being used in patients with ABPA.
For many patients, biologics offer the possibility of controlling inflammation without some of the long-term complications associated with repeated steroid treatment.
Why are steroids used first?
ABPA can cause intense airway inflammation. Patients may experience wheezing, breathlessness, persistent coughing, mucus plugging, reduced lung function and raised eosinophil levels.
Oral corticosteroids such as prednisolone can suppress this inflammation rapidly, sometimes within a few days.
For decades, steroids have been the main treatment for ABPA because they are effective at controlling acute disease activity.
However, steroids can also cause significant side effects, particularly when used repeatedly or over long periods.
- Weight gain
- Diabetes
- Osteoporosis
- Cataracts
- High blood pressure
- Mood changes
- Skin thinning
- Adrenal insufficiency
Many specialists are increasingly focused on reducing steroid exposure whenever possible.
Why are antifungal medicines used?
ABPA is not simply an infection. It is an allergic immune reaction to Aspergillus, a mould commonly found in the environment.
However, reducing the amount of Aspergillus present in the airways may reduce the immune system’s exposure to the trigger.
Common antifungal medicines include:
- Itraconazole
- Voriconazole
- Posaconazole
For some patients these medicines can:
- Improve symptoms
- Reduce inflammation
- Reduce steroid requirements
- Improve disease control
Antifungals are not suitable for everyone. Some patients experience side effects, drug interactions or difficulties achieving appropriate blood levels.
Why aren’t biologics usually offered first?
Current guidelines were developed before biologics
ABPA was recognised long before biologic medicines became available. Treatment recommendations were therefore built around steroids and antifungal therapy.
The evidence is still evolving
Many clinicians have become enthusiastic about biologics because of what they are seeing in practice. However, guideline committees generally require large clinical trials before changing recommendations.
Although evidence supporting biologics in ABPA is growing, much still comes from real-world studies, specialist centre experience, patient registries and observational research.
Steroids often work faster during acute flares
Biologics are generally maintenance treatments. They often take weeks or months to achieve their full effect. Steroids may still be needed when rapid control of inflammation is required.
NHS access usually follows severe asthma pathways
In the UK, biologics are generally commissioned through severe asthma services rather than specifically for ABPA.
Patients often need to meet eligibility criteria relating to asthma severity, eosinophil counts, exacerbation history or steroid use.
Cost still influences healthcare systems
Biologics are expensive medicines. Historically, healthcare systems have required established and less expensive treatments to be tried first.
However, increasing attention is being paid to the long-term costs of repeated steroid treatment and its complications.
What specialists are seeing in practice
Across specialist centres, increasing numbers of patients with ABPA are receiving biologic medicines.
Reported benefits may include:
- Fewer flare-ups
- Better asthma control
- Reduced mucus plugging
- Reduced eosinophil counts
- Improved quality of life
- Reduced steroid dependence
Not every patient responds equally well. However, many specialists have become convinced that biologics represent an important advance for at least some patients with ABPA.
Could treatment change in the future?
Possibly. Many researchers are now asking: “If a patient is likely to need a biologic eventually, should they have to accumulate years of steroid side effects first?”
Future treatment pathways may become increasingly personalised. Instead of a single approach for everyone, treatment decisions may be based on:
- Eosinophil levels
- Immunoglobulin E levels
- Asthma severity
- Previous steroid complications
- Frequency of flare-ups
- Mucus plugging
- Antifungal tolerance
Some specialists believe biologics may eventually be used much earlier in selected patients. Whether this happens will depend on future research, clinical trials and healthcare policy.
What can patients do while waiting?
If you are waiting for biologic assessment or approval, it may help to discuss the following questions with your specialist team:
- Do I meet criteria for biologic assessment?
- Am I receiving repeated steroid courses?
- Could steroid side effects affect treatment decisions?
- Would severe asthma review be appropriate?
- Is my current treatment achieving good control?
Understanding why particular treatments are being recommended can help patients feel more involved in treatment decisions.
Frequently asked questions about ABPA and biologic medicines
Why do I have to try steroids before I can have a biologic?
Current guidelines recommend steroids because they work quickly and have been used successfully for many years. Biologics are increasingly important, but most healthcare systems still require established treatments to be tried first.
Why do I have to take an antifungal medicine if ABPA is not an infection?
ABPA is an allergic reaction rather than a conventional infection. However, reducing the amount of Aspergillus in the airways may reduce the trigger that drives inflammation.
What exactly is a biologic medicine?
Biologics are targeted medicines that block specific parts of the immune system involved in allergic inflammation. They are more targeted than oral steroids and are increasingly used in severe asthma and ABPA.
Can biologics cure ABPA?
No. There is currently no cure for ABPA. Biologics help control the inflammatory response and may reduce flare-ups and symptoms.
Can biologics help me stop taking steroids?
Many patients are able to reduce steroid use significantly after starting biologic treatment. Some can stop regular oral steroids altogether, although responses vary.
Are biologics safer than long-term steroids?
All treatments have risks. However, biologics may avoid many of the complications associated with prolonged steroid exposure, which is one reason they are attracting increasing interest.
Why has another patient received a biologic when I have not?
Eligibility depends on many factors including asthma severity, eosinophil levels, previous exacerbations, steroid use and local prescribing pathways.
How do doctors decide which biologic to prescribe?
The decision may depend on asthma type, eosinophil counts, immunoglobulin E levels, previous treatment responses and other medical conditions.
How quickly do biologics work?
Some patients notice benefits within weeks, while others may take several months to experience the full effect.
Could biologics become the first treatment for ABPA in the future?
Possibly. Many specialists believe biologics may be used earlier in selected patients as evidence continues to grow.
What should I do if I think a biologic might help me?
Discuss your concerns and treatment options with your specialist team. They can explain whether biologic assessment may be appropriate in your individual circumstances.
Related articles
- What Is Allergic Bronchopulmonary Aspergillosis (ABPA)?
- Understanding Biologic Medicines in Asthma and ABPA
- Steroids, Prednisolone and Adrenal Insufficiency
- Antifungal Medicines for Aspergillosis
- Mucus Plugs in ABPA
- Severe Asthma and ABPA
- Living Well With ABPA
- Questions to Ask at Your Next ABPA Appointment
When to seek medical advice
Contact your healthcare team if you experience:
- Worsening breathlessness
- Increasing wheeze
- New or worsening mucus plugs
- Significant medication side effects
- Repeated need for rescue steroids
- Coughing up blood
- Symptoms suggestive of adrenal insufficiency
Seek urgent medical help if you develop severe breathlessness, significant chest pain or feel seriously unwell.
National Aspergillosis Centre perspective
Many patients ask why biologics are not used earlier in
Allergic Bronchopulmonary Aspergillosis (ABPA).
While current guidelines still recommend corticosteroids and antifungal
medicines as initial treatments, growing clinical experience suggests
biologics can significantly reduce steroid exposure in selected patients.
Ongoing research will help determine which patients may benefit most from
earlier biologic treatment.
Author and review information
Author: National Aspergillosis Centre Patient Support Team
Reviewed by: National Aspergillosis Centre Clinical Team
Organisation: National Aspergillosis Centre, Manchester, UK
Intended audience: People with ABPA, families and carers
Last reviewed: June 2026
References
- Revised ISHAM Guidelines for the Diagnosis and Management of Allergic Bronchopulmonary Aspergillosis.
- British Thoracic Society guidance relating to Aspergillus disease.
- NICE guidance on biologic therapies for severe asthma.
- Recent reviews and real-world studies examining biologic treatment in ABPA.
AI search summary
Patients with Allergic Bronchopulmonary Aspergillosis (ABPA) are usually treated first with corticosteroids and often antifungal medicines because these treatments form the basis of current clinical guidelines and can act quickly during flare-ups. Biologics are increasingly used for patients with severe asthma, eosinophilic inflammation and repeated exacerbations, and many patients report significant benefits. Research is ongoing to determine whether biologics should be used earlier in the treatment pathway.
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Why Antifungal Drug Interactions Matter — and How AntifungalInteractions.org Can Help

Key points
- Antifungal medicines used in aspergillosis can interact with many common medicines and supplements.
- Some interactions are mild, while others can significantly affect drug levels or side effects.
- Interactions may involve steroids, inhalers, antibiotics, heart medicines, acid suppressants and herbal supplements.
- Patients should always tell healthcare teams about all medicines, vitamins and supplements they take.
- AntifungalInteractions.org is a specialist resource designed to help healthcare professionals and patients understand potential antifungal interactions.
Why do antifungal interactions matter so much?
The antifungal medicines used to treat aspergillosis are powerful and highly specialised drugs. They are extremely important in controlling fungal disease, but many also affect the way the body processes other medicines.
This is particularly true for azole antifungals such as:
- itraconazole,
- voriconazole,
- posaconazole,
- isavuconazole.
These medicines are processed through enzyme systems in the liver, especially the cytochrome P450 system. Unfortunately, many other medicines also use these same pathways.
This means antifungals can sometimes:
- increase levels of other medicines,
- reduce levels of other medicines,
- increase side effects,
- affect liver function,
- change how well treatments work.
Because aspergillosis patients often take several medicines at the same time, interactions become particularly important.
Common medicines that may interact with antifungals
Not every interaction is dangerous, and many medicines can still be used safely with careful monitoring. However, some combinations require dose adjustments or additional caution.
Steroids and inhalers
Many patients with allergic bronchopulmonary aspergillosis (ABPA), severe asthma or bronchiectasis take steroid medicines.
Interactions can occur with:
- prednisolone,
- methylprednisolone,
- inhaled steroids such as fluticasone or budesonide.
Azole antifungals can increase steroid exposure, potentially increasing the risk of side effects such as:
- weight gain,
- skin thinning,
- high blood sugar,
- adrenal suppression,
- mood changes.
Heart medicines
Some antifungals can affect heart rhythm or interact with medicines used for:
- high blood pressure,
- irregular heartbeat,
- blood thinning,
- cholesterol management.
This is one reason doctors and pharmacists carefully review medication lists before starting antifungal treatment.
Acid suppressants
Medicines used for acid reflux or stomach protection may affect how well some antifungals are absorbed.
This includes:
- omeprazole,
- lansoprazole,
- esomeprazole,
- antacid preparations.
In some cases, antifungal levels may become too low to work effectively.
Antibiotics and other anti-infective medicines
Some antibiotics and antifungals can interact in ways that increase side effects or affect the electrical activity of the heart.
This is particularly important in people already taking multiple medicines.
Supplements and herbal remedies
Patients are often surprised that supplements may also interact with antifungals.
Potential concerns include:
- CBD oil or cannabis products,
- St John’s Wort,
- high-dose vitamins,
- herbal sleep remedies,
- sports supplements.
“Natural” products can still affect liver enzyme systems and may alter medicine levels.
What is AntifungalInteractions.org?
AntifungalInteractions.org is a specialist online interaction checker designed specifically for antifungal medicines.
The site was developed to help healthcare professionals identify and manage potential interactions involving antifungal drugs.
It is widely used internationally and is regularly updated by specialist pharmacy experts.
Why is it useful?
General drug references do not always provide detailed fungal-specific interaction guidance.
AntifungalInteractions.org focuses specifically on antifungal medicines and often provides:
- more detailed interaction information,
- clearer explanations of risks,
- practical management advice,
- colour-coded interaction severity ratings.
This can help patients better understand why clinicians sometimes adjust medicines, order blood tests or recommend monitoring.
Can patients use the website themselves?
Yes — many patients find it useful for understanding their treatment better.
However, it is important not to interpret interaction checkers without context.
An interaction warning does not automatically mean:
- a medicine combination is unsafe,
- treatment must stop,
- harm will definitely occur.
Many interactions can be safely managed by:
- dose adjustments,
- blood test monitoring,
- timing changes,
- careful clinical supervision.
What should patients do?
Patients should try to keep an up-to-date list of:
- prescription medicines,
- inhalers,
- vitamins,
- supplements,
- CBD or cannabis products,
- over-the-counter medicines.
It is particularly important to mention supplements or herbal remedies because these are easily overlooked during clinic visits.
Do not stop medicines without advice
One of the most important messages is that patients should not stop antifungal medicines or other prescribed treatments based only on an online interaction checker.
Antifungal treatment decisions are often carefully balanced against:
- severity of fungal disease,
- lung function,
- other illnesses,
- alternative treatment options.
Healthcare teams can often safely manage interactions once they are aware of them.
The bottom line
Drug interactions are an important part of antifungal treatment, particularly for people living with aspergillosis who may already take several medicines.
AntifungalInteractions.org is an excellent specialist resource that can help patients and healthcare professionals better understand these interactions.
However, online interaction checkers should support discussions with healthcare professionals rather than replace them.
Useful link
Visit AntifungalInteractions.org
BNF to check any other medication interactions
Author and review information
Prepared as general educational information for people affected by aspergillosis and related lung conditions.
This article does not replace personalised medical advice.
Last reviewed: May 2026
CBD Oil, Cannabis and Aspergillosis: Safety, Quality and Drug Interactions

Key points
- Some people with chronic illnesses report that CBD or cannabis products help with pain, anxiety, sleep or wellbeing.
- Evidence for benefit in aspergillosis itself remains limited.
- Smoking or vaping cannabis may irritate the lungs and may not be suitable for people with respiratory disease.
- CBD and cannabis products can interact with antifungal medicines and steroids.
- Product quality varies greatly, especially with over-the-counter or online products.
- Always let your healthcare team or pharmacist know about any CBD or cannabis products you are using.
Why this topic comes up
People living with aspergillosis often cope with long-term symptoms such as fatigue, chronic cough, breathlessness, pain or chest discomfort, anxiety, poor sleep, steroid side effects and reduced quality of life.
Because of this, discussions about CBD oil, cannabis or “medical marijuana” occasionally appear in patient groups and online communities. Some people report that these products help them cope better with symptoms or improve sleep and wellbeing.
At the same time, there are important safety issues that people with respiratory fungal disease should be aware of, particularly around lung irritation, product quality and drug interactions.
CBD and cannabis are not the same thing
CBD: cannabidiol
CBD, or cannabidiol, is one of the compounds found in cannabis plants. CBD products usually contain little or no THC, or tetrahydrocannabinol, the chemical responsible for the “high” associated with cannabis.
CBD products may be sold as oils, capsules, gummies, creams, drinks or food supplements. CBD is generally less intoxicating than THC-containing cannabis products.
Cannabis or marijuana
Cannabis products may contain varying amounts of THC. THC is more strongly associated with intoxication, impaired concentration, sedation, anxiety or panic, hallucinations or paranoia in some people, and impaired driving or coordination.
Different cannabis products can vary enormously in strength and purity.
What conditions have good evidence for medical cannabis?
Cannabis-based medicines are prescribed in some situations where evidence is reasonably strong.
In the UK, prescription cannabinoid medicines are mainly used for certain severe forms of epilepsy, chemotherapy-related nausea and vomiting, and muscle spasticity in multiple sclerosis. There is also ongoing research into chronic pain and palliative care use.
However, evidence for benefit in aspergillosis, bronchiectasis, asthma, allergic bronchopulmonary aspergillosis (ABPA) or chronic pulmonary aspergillosis (CPA) remains limited.
This does not mean that people never feel benefit. Some clearly do. But respiratory fungal disease is not currently one of the better-established medical indications.
Lung safety concerns in aspergillosis
This is probably the most important issue for many aspergillosis patients.
Smoking cannabis
Smoking any substance exposes the lungs to heat, particulates, irritants and combustion products.
For people who already have asthma, bronchiectasis, chronic lung infection, airway inflammation or fungal lung disease, this may worsen symptoms such as coughing, wheezing, chest tightness, mucus production or breathlessness.
Vaping
Some people assume vaping is automatically safer than smoking, but this is not always true.
Vaping can still irritate the airways and lungs, and the long-term effects are not fully understood. For people with fragile or inflamed lungs, clinicians are often cautious about recommending inhaled cannabis products of any kind.
Contamination and quality problems
One important issue is that cannabis and CBD products are not all produced to the same standards.
Product quality can vary greatly
Some products may contain more or less CBD or THC than stated, contain contaminants, contain pesticides or solvents, or vary significantly between batches.
This is especially true for unregulated products purchased online or from unofficial sources.
Mould contamination
Cannabis products can occasionally become contaminated with moulds, including Aspergillus species.
This is particularly concerning for immunocompromised patients, transplant patients, people on long-term steroids, and people with chronic lung disease.
Although this appears uncommon, it is one reason respiratory specialists are often cautious about smoked cannabis products in fungal disease patients.
Drug interactions: a very important issue
Many antifungal medicines are processed through liver enzyme systems that can also be affected by CBD or cannabis compounds. This means interactions are possible.
Antifungal medicines of concern
Potential interactions may occur with antifungals such as:
- itraconazole
- voriconazole
- posaconazole
- isavuconazole
These medicines already require careful monitoring because blood levels can vary significantly between people.
Adding CBD or cannabis products may potentially alter antifungal levels, liver metabolism or side-effect risks.
Steroids and other medicines
Interactions may also occur with prednisolone, methylprednisolone, opioid pain medicines, sleeping tablets, antidepressants and anti-anxiety medicines.
Possible effects may include increased sedation, dizziness, falls, confusion, liver irritation or worsening side effects.
This does not automatically mean the products are unsafe, but it does mean healthcare teams should know about them.
“Natural” does not always mean low risk
Many patients understandably assume that CBD products are “gentle” or “natural.”
However, natural products can still interact with prescription medicines, doses may be inconsistent, some products are poorly regulated, and side effects can still occur.
This is especially important in aspergillosis because patients are often already taking multiple medicines, including antifungals and steroids.
Why patients may still be interested
Despite the uncertainties, it is understandable why some patients explore these products.
People sometimes report improvement in sleep, anxiety, pain, appetite, overall wellbeing or coping with chronic illness. These experiences are real and important to acknowledge respectfully.
At present, however, there is still limited high-quality research specifically in aspergillosis and chronic fungal lung disease.
Practical safety advice
If someone chooses to use CBD or cannabis products, it is sensible to:
- tell their healthcare team or pharmacist,
- mention all supplements and oils being used,
- watch for new side effects after starting,
- avoid assuming “natural” means risk-free,
- be especially cautious with smoked or inhaled products,
- avoid driving or hazardous activities if feeling impaired.
When to seek medical advice
Medical review is important if new symptoms appear after starting CBD or cannabis products, especially:
- worsening breathlessness,
- severe drowsiness,
- confusion,
- hallucinations,
- jaundice,
- severe dizziness,
- palpitations,
- fever or worsening chest symptoms.
The bottom line
CBD and cannabis products are becoming more widely discussed in chronic illness communities, including among people with aspergillosis.
Some people report benefits for sleep, anxiety or quality of life, and there are a small number of medical conditions where prescription cannabis-based medicines are supported by stronger evidence.
However, for aspergillosis patients, important concerns remain around lung irritation, mould contamination, product quality, and interactions with antifungal medicines and steroids.
Because of this, healthcare teams are usually cautious and prefer open discussion rather than patients using these products without medical awareness.
Further information
- NHS guidance on medical cannabis
- Specialist pharmacist advice on antifungal interactions
- Specialist pharmacist advice on steroid interactions
- National Aspergillosis Centre resources on antifungal medicines
Author and review information
Prepared for aspergillosis patients and carers as general educational information. This article is not intended to replace personalised medical advice.
Last reviewed: May 2026
Understanding Steroids, Cortisol, ACTH and Adrenal Suppression in Aspergillosis

For people with Allergic Bronchopulmonary Aspergillosis (ABPA), severe asthma and other forms of aspergillosis, steroid treatment can be both extremely helpful and medically complicated.
Many patients are prescribed corticosteroids such as prednisolone or methylprednisolone to control inflammation, improve breathing and reduce the risk of lung damage. These medicines can be very effective. However, repeated or long-term steroid treatment can also affect the body’s natural hormone system, especially the adrenal glands.
Some patients are told:
- “Your cortisol is low.”
- “Your ACTH level is abnormal.”
- “You may have adrenal suppression.”
- “This may be steroid withdrawal.”
- “The blood tests are difficult to interpret.”
This can be worrying and confusing, especially when symptoms are severe but the explanation is not straightforward.
This article explains why adrenal problems can occur in some people with aspergillosis and severe asthma, why blood tests such as cortisol and ACTH can be difficult to interpret, and why steroid treatment sometimes involves a careful balance between benefit and risk.
Key points summary
- Steroid medicines can reduce the body’s own natural cortisol production.
- This is called adrenal suppression or adrenal insufficiency.
- Symptoms may overlap with aspergillosis, asthma, infection, fatigue or steroid withdrawal.
- Blood tests such as cortisol and ACTH can be difficult to interpret.
- Inhaled steroids and antifungal medicines can also influence steroid effects.
- Long-term prednisolone is generally avoided where possible, but it may still be necessary for some patients.
- Patients should not stop or reduce steroids suddenly without medical advice.
- Severe symptoms such as collapse, vomiting, dehydration, confusion or severe weakness require urgent medical advice.
Contents
- What do the adrenal glands do?
- What are cortisol and ACTH?
- Why are steroids used in ABPA and aspergillosis?
- Are steroids only meant for short-term use?
- How steroids affect the body’s natural hormone system
- What is adrenal suppression?
- Why symptoms can be difficult to recognise
- Why blood tests can become confusing
- The role of inhaled steroids
- Antifungal medicines and steroid interactions
- Steroid withdrawal versus adrenal insufficiency
- What kinds of stress may require higher steroid doses?
- When should patients seek urgent medical advice?
- Frequently asked questions
- Final thoughts
What do the adrenal glands do?
The adrenal glands are small glands that sit above the kidneys. They produce several important hormones, including cortisol.
Cortisol helps the body:
- respond to stress,
- maintain blood pressure,
- regulate energy levels,
- support immune function,
- and cope with illness or infection.
The body carefully controls cortisol levels through a hormone signalling system involving the brain, the pituitary gland and the adrenal glands.
What are cortisol and ACTH?
ACTH stands for adrenocorticotropic hormone.
The pituitary gland in the brain releases ACTH to tell the adrenal glands to produce cortisol.
This system normally works as a feedback loop:
- When cortisol is low, ACTH usually rises.
- When cortisol is high, ACTH usually falls.
Cortisol levels naturally change during the day and are usually highest in the early morning. This is one reason why many cortisol blood tests are taken around 9am.
Why are steroids used in ABPA and aspergillosis?
In Allergic Bronchopulmonary Aspergillosis (ABPA) and some severe asthma conditions, the immune system reacts strongly to Aspergillus fungi.
This can cause:
- airway inflammation,
- wheezing,
- coughing,
- mucus plugging,
- breathlessness,
- worsening lung function,
- and repeated flare-ups.
Steroids such as prednisolone are often used because they reduce inflammation quickly and effectively.
Some patients may need:
- short courses during flare-ups,
- repeated courses,
- long-term low-dose treatment,
- inhaled steroid therapy,
- antifungal treatment,
- or biologic medicines to reduce the need for oral steroids.
For many patients, steroids are not optional or casual medicines. They may be essential treatments used to control serious inflammation and protect lung function.
Are steroids only meant for short-term use?
Patients sometimes hear that prednisolone was “only designed for short-term use”. This is understandable, because modern medical practice tries to avoid long-term steroid treatment where possible.
Long-term oral corticosteroids can cause significant side effects, including:
- adrenal suppression,
- diabetes or worsening blood sugar control,
- osteoporosis and fracture risk,
- increased infection risk,
- cataracts or glaucoma,
- muscle weakness,
- skin thinning and bruising,
- weight gain,
- sleep disturbance,
- and mood or mental health effects.
For this reason, doctors usually aim to use steroids at the lowest effective dose for the shortest safe time.
However, it is also important not to oversimplify this message. Some people with ABPA, severe asthma or other inflammatory lung conditions do need longer-term steroid treatment because the disease itself can be dangerous if not controlled.
In some patients, the risk of uncontrolled lung inflammation may outweigh the risks of steroid treatment, at least for a period of time.
Modern care increasingly tries to reduce steroid exposure by using other approaches where appropriate, such as:
- antifungal treatment,
- biologic medicines for severe asthma or ABPA-type inflammation,
- careful monitoring of lung function and blood tests,
- gradual steroid tapering,
- bone protection where needed,
- diabetes monitoring,
- and regular review of whether the steroid dose can be reduced.
The key message is not that patients have done anything wrong by needing steroids. The key message is that long-term steroid treatment deserves careful monitoring, honest discussion and regular review.
Patient reassurance: If you have needed prednisolone for ABPA or severe asthma, this does not mean you have failed or made a poor choice. It usually means your medical team has been trying to control a potentially serious inflammatory condition. The aim is to balance benefit and risk as safely as possible.
Balancing risks and benefits
One of the hardest parts of long-term steroid treatment is that two important things can be true at the same time:
- steroids can cause serious side effects,
- and steroids can also prevent serious lung damage and dangerous flare-ups.
Patients sometimes feel guilty, frustrated or frightened when they hear about the risks of prednisolone. Others may feel judged for “still being on steroids”.
However, many people with ABPA or severe asthma did not choose steroids lightly. Steroids are often prescribed because uncontrolled inflammation itself can damage the lungs, worsen bronchiectasis, increase hospital admissions and significantly reduce quality of life.
Modern respiratory care increasingly tries to reduce steroid exposure where possible using:
- antifungal therapy,
- biologic medicines,
- careful monitoring,
- gradual tapering plans,
- and better recognition of steroid side effects.
But for some patients, steroids may still remain an important part of treatment, even if the goal is eventually to reduce the dose.
The most helpful approach is usually not “steroids are good” or “steroids are bad”, but rather:
- What dose is truly needed?
- Can the dose be safely reduced?
- Are side effects being monitored properly?
- Are there alternative treatments available?
- And is the patient being listened to when symptoms change?
This balanced approach is increasingly recognised as one of the most important parts of caring for people with severe asthma and aspergillosis.
How steroids affect the body’s natural hormone system
Steroid medicines act in ways that are similar to natural cortisol.
When the body senses steroid medication in the bloodstream, it may reduce its own ACTH production. Over time, this can mean:
- ACTH falls,
- the adrenal glands become less active,
- and natural cortisol production decreases.
Doctors sometimes describe this as the adrenal glands “going to sleep”.
This is called:
- adrenal suppression,
- steroid-induced adrenal insufficiency,
- or hypothalamic-pituitary-adrenal axis suppression.
What is adrenal suppression?
Adrenal suppression means the body may not produce enough cortisol when it is needed.
This can become especially important during:
- infection,
- surgery,
- injury,
- severe stress,
- or rapid steroid reduction.
Some patients develop symptoms gradually. Others notice problems when trying to reduce steroid doses.
Because cortisol is part of the body’s stress response, people with adrenal insufficiency may need specific medical advice about what to do during illness, vomiting, surgery or severe infection.
Why symptoms can be difficult to recognise
Symptoms of adrenal suppression can overlap with many other conditions common in people with aspergillosis, ABPA or severe asthma.
Possible symptoms include:
- profound tiredness,
- weakness,
- dizziness,
- sweating,
- shakiness,
- nausea,
- muscle aches,
- low mood,
- brain fog,
- reduced exercise tolerance,
- poor recovery after illness,
- or feeling suddenly much worse after reducing steroids.
These symptoms may also occur with:
- an ABPA flare,
- asthma worsening,
- lung infection,
- chronic illness,
- poor sleep,
- anxiety,
- or steroid withdrawal.
This overlap is one reason why patients can feel frustrated or uncertain. Symptoms are real, even when the cause is difficult to pin down.
Why blood tests can become confusing
Many patients expect blood tests to give clear answers, but cortisol and ACTH results are often complicated.
Several things can affect results:
- time of day,
- recent steroid use,
- the type of steroid used,
- inhaled steroid dose,
- recent dose reductions,
- illness or stress,
- laboratory methods,
- and antifungal medicines.
Typical patterns
In classic steroid-induced adrenal suppression:
- cortisol is low,
- and ACTH is low or “inappropriately normal”.
This happens because steroid medication suppresses ACTH production.
However, real-life cases are not always straightforward. Some patients may have recently reduced steroids, missed doses, changed steroid type, used high-dose inhaled steroids, or taken antifungal medicines that alter steroid metabolism.
In some situations, endocrinologists may need repeated testing or dynamic tests such as a Synacthen test to understand whether the adrenal glands can respond properly.
It is important that patients do not try to interpret cortisol or ACTH results in isolation. The result needs to be understood alongside symptoms, medication history, timing of the sample and the clinical situation.
The role of inhaled steroids
Many people assume inhaled steroids only affect the lungs.
Inhaled steroids usually have fewer whole-body effects than long-term oral steroids, but high doses can sometimes contribute to adrenal suppression, especially when combined with:
- long-term or repeated oral steroid courses,
- azole antifungal medicines,
- other medicines that affect steroid metabolism,
- or individual differences in how medicines are processed.
This does not mean inhaled steroids are unsafe or should be stopped suddenly. For many people with asthma or ABPA, inhaled steroids are an important part of keeping airway inflammation under control.
It does mean that total steroid exposure should be reviewed carefully, especially in patients with symptoms suggestive of adrenal suppression.
Antifungal medicines and steroid interactions
This is an especially important issue in aspergillosis.
Antifungal medicines such as:
- itraconazole,
- voriconazole,
- posaconazole,
- and isavuconazole
can interact with other medicines, including corticosteroids.
Some azole antifungals slow the breakdown of steroids in the liver. This can increase the body’s exposure to steroid medication, meaning that even doses which initially appear moderate may sometimes behave more like higher doses inside the body.
This interaction may increase the risk of:
- adrenal suppression,
- Cushing-like side effects,
- weight gain,
- skin thinning,
- easy bruising,
- high blood sugar,
- muscle weakness,
- or hormonal imbalance.
The interaction can be particularly important in patients taking:
- oral prednisolone or methylprednisolone,
- high-dose inhaled steroids,
- multiple steroid preparations together,
- or repeated steroid courses over time.
Some patients tolerate steroid treatment reasonably well for long periods before antifungal medicines are added. Endocrine problems may then become more noticeable later, especially during:
- infection,
- surgery,
- vomiting or diarrhoea,
- major physical stress,
- rapid steroid reduction,
- or severe asthma or ABPA flare-ups.
This can feel as though adrenal insufficiency has appeared “suddenly” or “out of nowhere”, when in reality the adrenal glands may have been partially suppressed for some time.
Why adrenal insufficiency may only become obvious during illness or stress
Some patients with steroid-related adrenal suppression cope reasonably well during normal day-to-day life, especially while still taking regular steroids. However, the problem may become much more noticeable when the body faces significant physical stress.
Under normal circumstances, the body rapidly increases cortisol production during severe illness or injury. If the adrenal glands cannot respond properly, symptoms may suddenly become much more severe.
Patients sometimes describe:
- “crashing” during an infection,
- extreme exhaustion,
- severe weakness,
- dizziness or collapse,
- poor recovery after illness,
- or feeling suddenly unable to cope physically.
This does not mean every severe illness in an ABPA patient is caused by adrenal insufficiency. Infections, inflammation and lung disease themselves are often the major problem. However, adrenal suppression can sometimes contribute to deterioration and may only reveal itself during periods of stress or acute illness.
This is one reason why some patients are given “sick day rules”, emergency steroid cards or advice about temporary steroid dose increases during illness.
Importantly, this does not mean antifungal medicines are “bad” or should be avoided. In many patients, antifungal treatment significantly improves ABPA control and may eventually help reduce steroid exposure overall. The important message is that these combinations require awareness, monitoring and careful medical supervision.
Patients should never stop antifungal or steroid medicines suddenly without medical advice.
Steroid withdrawal versus adrenal insufficiency
Steroid withdrawal and adrenal insufficiency can feel very similar.
Steroid withdrawal
When steroid doses are reduced, the body may take time to adjust. Patients can temporarily feel unwell even if the adrenal glands are slowly recovering.
Adrenal insufficiency
Adrenal insufficiency means the body cannot produce enough cortisol to meet its needs.
Symptoms may overlap considerably. Recovery can sometimes take weeks or months, and in some patients longer.
For many patients, one of the hardest parts is that they may “look well” externally while feeling exhausted internally.
It is important that symptoms are not dismissed simply because they are difficult to measure.
What kinds of stress may require higher steroid doses?
Patients who have adrenal insufficiency or significant adrenal suppression may sometimes be advised to temporarily increase steroid doses during periods of physical stress. This is often called following “sick day rules”.
The body normally produces extra cortisol during stress, illness or injury. If the adrenal glands cannot respond properly, extra steroid medication may sometimes be needed to prevent serious illness.
Examples of situations that may place significant stress on the body include:
- high fever or significant infection,
- chest infection or pneumonia,
- vomiting or diarrhoea,
- COVID-19 or influenza,
- major dental treatment or surgery,
- fractures or significant injury,
- general anaesthetic procedures,
- severe asthma attacks or ABPA flare-ups,
- hospital admission with acute illness,
- or severe physical exhaustion associated with illness.
The exact advice varies between patients depending on:
- whether adrenal insufficiency has been formally diagnosed,
- the steroid dose currently being taken,
- how suppressed the adrenal glands are thought to be,
- other medical conditions,
- and guidance from endocrine or respiratory specialists.
Some patients are provided with:
- specific “sick day rules”,
- an emergency steroid card,
- medical alert jewellery,
- or emergency hydrocortisone injection kits.
Patients should only adjust steroid doses according to the advice provided by their medical team. If severe vomiting, collapse, confusion, inability to keep medication down or major deterioration occurs, urgent medical advice is needed.
When should patients seek urgent medical advice?
Patients should seek urgent medical help if they experience:
- collapse,
- fainting,
- severe vomiting,
- inability to keep steroid medication down,
- severe dehydration,
- confusion,
- severe weakness,
- very low blood pressure,
- or sudden major deterioration during illness.
These symptoms can occasionally indicate adrenal crisis, which is a medical emergency.
Patients who have been told they are at risk of adrenal insufficiency should follow the emergency and “sick day” advice given by their endocrine or respiratory team.
Frequently asked questions
Does everyone taking steroids develop adrenal suppression?
No. Risk depends on factors such as dose, duration, repeated courses, inhaled steroid dose, other medicines and individual sensitivity.
Can adrenal function recover?
Yes. Many patients gradually recover adrenal function over time, although recovery speed varies.
Are inhaled steroids safer than tablets?
Inhaled steroids usually have fewer whole-body effects than long-term oral steroids, but high doses can still contribute to adrenal suppression in some patients, especially when combined with certain antifungal medicines.
Why do I feel worse when reducing steroids?
This can happen for several reasons. The underlying lung disease may flare, the body may be adjusting to lower steroid levels, or cortisol production may not yet have recovered.
Does needing long-term prednisolone mean something has gone wrong?
Not necessarily. Long-term prednisolone is usually avoided where possible because of side effects, but some patients need it to control serious inflammation. The aim is regular review, careful monitoring and dose reduction when it is safe.
Should I stop steroids because of this risk?
No patient should stop prescribed steroids suddenly unless specifically advised by their medical team. Sudden withdrawal can be dangerous, especially if the body’s own cortisol production is suppressed.
Final thoughts
Adrenal suppression and steroid-related hormone problems are recognised complications of corticosteroid treatment.
For patients with aspergillosis, ABPA and severe asthma, the situation can become especially complex because:
- steroid treatment may be medically necessary,
- symptoms overlap with many other conditions,
- antifungal medicines may interact with steroids,
- inhaled steroids may add to total steroid exposure,
- and blood tests are not always straightforward.
Patients sometimes feel frustrated because their symptoms are difficult to explain or measure clearly. However, these experiences are recognised by clinicians and researchers, and steroid-related adrenal problems are increasingly acknowledged as important and sometimes under-recognised.
The goal is not to create fear of steroids. The goal is to use them carefully, monitor them properly, reduce them when possible, and support patients through the difficult process of balancing disease control with treatment side effects.
Suggested internal links
- ABPA treatment overview
- Steroid side effects
- Antifungal drug interactions
- Fatigue and aspergillosis
- Severe asthma and biologics
- Living with long-term aspergillosis
- Mental wellbeing and chronic illness
- Aspergillosis.org Knowledge Hub
References and further reading
When was this article last reviewed?
Last reviewed: May 2026
Author and review information
Prepared for patient education and support purposes.
This article is intended for general educational use and should not replace personalised medical advice from a healthcare professional.
Physiotherapy for Aspergillosis: Breathing, Mucus Clearance and Keeping Active

Physiotherapy can be an important part of supportive care for some people living with aspergillosis. It does not treat the fungal infection itself, but it can help with breathlessness, mucus clearance, strength, fitness, posture, fatigue and confidence with activity.
This may be especially helpful for people with Chronic Pulmonary Aspergillosis (CPA), Allergic Bronchopulmonary Aspergillosis (ABPA), Severe Asthma with Fungal Sensitisation (SAFS), Aspergillus bronchitis, bronchiectasis, asthma, Chronic Obstructive Pulmonary Disease (COPD), or lung damage from previous infection.
Key points
- Physiotherapy can help some aspergillosis patients manage mucus, breathlessness and reduced activity.
- Airway clearance techniques may be useful when mucus is difficult to clear.
- The Active Cycle of Breathing Technique (ACBT) is commonly used in respiratory physiotherapy.
- Other approaches include huffing, breathing control, postural drainage, airway clearance devices, exercise training and pulmonary rehabilitation.
- Technique matters — airway clearance should ideally be taught by a respiratory physiotherapist.
- National Aspergillosis Centre (NAC) patients can ask for advice from experienced physiotherapists who understand aspergillosis.
Contents
- Why physiotherapy matters in aspergillosis
- Airway clearance and mucus management
- Active Cycle of Breathing Technique (ACBT)
- Other physiotherapy techniques
- Pulmonary rehabilitation and exercise
- Breathing retraining and breathlessness
- Where to get physiotherapy in the UK
- Useful NHS videos and guides
- When to seek medical advice
Why physiotherapy matters in aspergillosis
Many people with aspergillosis have underlying lung conditions that affect how the lungs clear mucus, expand during breathing and cope with exertion. Long-term illness can also lead to muscle weakness, reduced fitness and loss of confidence with activity.
Common problems include:
- thick or persistent mucus
- frequent coughing
- breathlessness on exertion
- fatigue
- reduced walking distance
- weakness after illness or hospital admission
- poor posture from chronic breathlessness or coughing
- anxiety around breathing
- dysfunctional breathing patterns
Physiotherapy aims to improve function and quality of life. It is often most useful when it is personalised to the patient’s lung condition, symptoms, fitness level and treatment plan.
Airway clearance and mucus management
Some people with aspergillosis produce mucus every day. This is particularly common in people who also have bronchiectasis, asthma, Aspergillus bronchitis or repeated chest infections.
Mucus that remains in the lungs can contribute to:
- blocked or narrowed airways
- more coughing
- chest tightness
- breathlessness
- fatigue
- recurrent infections
Respiratory physiotherapists can teach airway clearance techniques to help move mucus from smaller airways towards larger airways, where it can be cleared more easily by huffing or coughing.
Active Cycle of Breathing Technique (ACBT)
ACBT stands for Active Cycle of Breathing Technique. It is one of the most commonly used airway clearance methods in respiratory physiotherapy.
It usually includes three parts:
- Breathing control – gentle relaxed breathing to settle the airways.
- Deep breathing exercises – larger breaths to help air move behind mucus.
- Huffing – a controlled breath out through an open mouth to move mucus upwards.
ACBT can often be adapted depending on symptoms, oxygen levels, energy, breathlessness and the amount of mucus being produced.
Other physiotherapy techniques
Huffing
A huff is a controlled breath out through an open mouth and throat. It can move mucus without the effort of repeated hard coughing. Many patients find huffing less exhausting than forceful coughing.
Postural drainage
Postural drainage uses body position and gravity to help drain mucus from different parts of the lungs. It may not be suitable for everyone, especially people with reflux, severe breathlessness, frailty, oxygen requirements or certain heart and lung complications.
Positive Expiratory Pressure and oscillating devices
Some patients may be advised to use airway clearance devices such as Flutter®, Acapella® or Aerobika®. These devices create resistance or vibration during breathing out, helping to loosen mucus and keep the airways open.
Breathing control
Breathing control can help settle the breathing pattern, reduce panic during breathlessness and make airway clearance less tiring.
Posture and mobility work
Chronic coughing and breathlessness can affect posture. Physiotherapy may include stretching, shoulder mobility, chest wall movement, gentle strengthening and exercises to improve comfort when breathing.
Fatigue management and pacing
Fatigue is common in aspergillosis. Physiotherapists may help patients pace activities, avoid “boom and bust” patterns, and gradually rebuild function without triggering prolonged exhaustion.
Pulmonary rehabilitation and exercise
Pulmonary rehabilitation is a structured programme of exercise and education for people with long-term lung disease who experience breathlessness. NHS England describes pulmonary rehabilitation as an exercise and education programme for people with lung disease who have symptoms of breathlessness.
Programmes may include:
- supervised exercise
- walking or cycling
- strength training
- breathing advice
- education about managing long-term lung disease
- confidence-building around activity
For aspergillosis patients, pulmonary rehabilitation may be particularly useful when breathlessness, weakness or reduced activity are affecting daily life.
Breathing retraining and breathlessness
Some people feel very breathless even when oxygen levels are normal or near normal. This can happen because breathlessness is influenced by airway inflammation, muscle effort, anxiety, breathing pattern, air trapping and the brain’s perception of breathing discomfort.
Breathing retraining may include:
- slower, calmer breathing
- diaphragmatic breathing
- pursed-lip breathing
- relaxation techniques
- coordinating breathing with walking, stairs or other activity
These techniques can be especially useful for patients who feel frightened by breathlessness or who have developed an inefficient breathing pattern.
Where to get physiotherapy in the UK
Access to physiotherapy varies across the UK, but patients with long-term lung disease may be able to obtain support through several routes.
1. Through your GP or respiratory team
Your GP, respiratory consultant, specialist nurse or hospital team may be able to refer you to a respiratory physiotherapist, community respiratory team or pulmonary rehabilitation service.
2. Through pulmonary rehabilitation services
Many local NHS pulmonary rehabilitation services accept referrals for people with chronic respiratory disease, including conditions such as Chronic Obstructive Pulmonary Disease (COPD), bronchiectasis, asthma, interstitial lung disease and other long-term breathing problems. Some services accept GP referrals, hospital referrals or self-referrals, but criteria vary locally.
3. Through community respiratory teams
Some areas have community respiratory teams that provide assessment, education, pulmonary rehabilitation, breathlessness support, oxygen-related advice and airway clearance support.
4. Through hospital respiratory physiotherapy departments
Hospital respiratory physiotherapists often support patients during admissions, after exacerbations, or through specialist outpatient respiratory clinics.
5. Through the National Aspergillosis Centre
National Aspergillosis Centre (NAC) patients can ask their NAC team whether specialist physiotherapy advice would be helpful. NAC has experienced physiotherapists who understand aspergillosis and the particular problems patients may face, including mucus clearance, breathlessness, fatigue, reduced fitness and co-existing lung disease.
6. Private physiotherapy
Some patients choose to see a private physiotherapist. The NHS advises that private physiotherapists should be chartered and registered with the Health and Care Professions Council (HCPC). The Chartered Society of Physiotherapy provides a “Find a Physio” directory that can be searched by location and specialty.
Useful UK links:
- National Aspergillosis Centre Physiotherapy
- NHS: Physiotherapy
- NHS England: Pulmonary rehabilitation
- Chartered Society of Physiotherapy: Find a physiotherapist
- Association of Chartered Physiotherapists in Respiratory Care
Useful NHS videos and guides
The following NHS resources may help patients understand airway clearance techniques. They should not replace individual advice from a respiratory physiotherapist.
Royal Free London NHS Foundation Trust – Active Cycle of Breathing
A clear patient-focused demonstration of ACBT.
Watch: Active Cycle of Breathing – Royal Free London NHS Foundation Trust
NHS Greater Glasgow & Clyde – Active Cycle of Breathing
A detailed demonstration from respiratory physiotherapy services.
Watch: Respiratory Physiotherapy Service – Active Cycle of Breathing
University College London Hospitals NHS Foundation Trust – breathing and airway clearance videos
UCLH has a useful set of patient information videos covering breathing exercises and airway clearance.
Watch: UCLH patient information videos – breathing exercises
UCLH – How to clear phlegm from your chest
A short, practical NHS video explaining how ACBT can help clear phlegm.
Watch: How to clear phlegm from your chest – ACBT
Cambridge University Hospitals NHS Foundation Trust
A patient information page explaining airway clearance and ACBT.
Read: Airway clearance – Active Cycle of Breathing Technique
Hull University Teaching Hospitals NHS Trust
A detailed patient leaflet on ACBT as a secretion clearance technique.
Read: Active Cycle of Breathing Technique – secretion clearance
University Hospitals Plymouth NHS Trust
A step-by-step patient guide to breathing control, thoracic expansion exercises and huffing.
Read: Active Cycle of Breathing Technique
When to seek medical advice
Airway clearance techniques should ideally be taught by a respiratory physiotherapist. Incorrect technique may sometimes worsen coughing, fatigue, airway irritation or breathlessness.
Seek medical advice urgently if you develop:
- new or worsening coughing of blood
- sudden worsening breathlessness
- chest pain
- fever or signs of infection
- dizziness or fainting
- significant oxygen desaturation
- rapid deterioration after starting a new exercise or airway clearance routine
Summary
Physiotherapy can be an important supportive treatment for some people with aspergillosis. It may help with mucus clearance, breathlessness, posture, fatigue, strength, confidence and activity levels.
Techniques such as ACBT, huffing, breathing control, postural drainage, airway clearance devices and pulmonary rehabilitation can all help selected patients. The best approach depends on the person’s symptoms, underlying lung condition and overall health.
For NAC patients, specialist physiotherapy advice is available from professionals experienced in aspergillosis care. If mucus clearance, breathlessness or reduced activity are becoming difficult, it is worth asking the NAC team whether physiotherapy input may help.
Medical note: This article is for general information only. It does not replace advice from your doctor, specialist nurse or respiratory physiotherapist. Airway clearance and exercise plans should be tailored to the individual patient.
Last reviewed: May 2026
When Breathlessness Feels Severe — Even When Oxygen Levels Look “Normal”

Many people living with aspergillosis, severe asthma, bronchiectasis, or other chronic lung conditions describe a confusing and sometimes frightening experience:
“My oxygen saturations are normal, my peak flow is reasonable, there’s little wheeze, but I still feel like I’m drowning.”
This can be distressing for patients and frustrating for carers. Some people feel that because their oxygen levels or breathing tests appear “acceptable”, their symptoms are not fully understood.
Importantly, severe breathlessness can occur even when standard measurements such as oxygen saturations and peak flow readings appear relatively normal.
This does not mean the symptoms are imaginary or “all in the mind”. Breathlessness is complex and can have many different causes.
Why Breathlessness Is More Complicated Than Oxygen Levels
When doctors or nurses assess breathing problems, they often check:
- Oxygen saturation levels (sats)
- Peak flow readings
- Respiratory rate
- Presence of wheeze
- Chest sounds
These are all important. However, they do not always reflect how breathless a person feels.
Some people with chronic respiratory illness may have:
- Normal oxygen saturations
- Reasonable peak flow readings
- Little visible wheeze
- Minimal mucus production
…yet still experience intense sensations of:
- air hunger
- tight chest
- difficulty taking a satisfying breath
- feeling unable to “fill the lungs”
- panic associated with breathing
- extreme fatigue from breathing effort
What Can Cause This?
Breathlessness in aspergillosis and chronic lung disease is often caused by several factors happening together.
Inflammation and Airway Sensitivity
Conditions such as Allergic Bronchopulmonary Aspergillosis (ABPA), Severe Asthma with Fungal Sensitisation (SAFS), bronchiectasis, and Chronic Pulmonary Aspergillosis (CPA) can all cause inflamed and hypersensitive airways.
The lungs may feel irritated or tight even if oxygen exchange remains relatively preserved.
Small Airways Dysfunction
Some breathing problems occur in the smaller airways of the lungs and may not always show clearly on basic tests such as peak flow.
Patients can feel significant chest tightness or air trapping despite “good numbers”.
Muscle Fatigue
Breathing takes muscular effort. Chronic respiratory illness can place a long-term strain on the chest wall and breathing muscles, leading to exhaustion and increased awareness of breathing.
Mucus and Airflow Changes
Even relatively small amounts of mucus or airway narrowing can create sensations of chest heaviness or difficulty moving air.
Breathing Pattern Dysfunction (Dysfunctional Breathing)
This is increasingly recognised in people with chronic respiratory illness.
When breathing becomes difficult over months or years, people may unconsciously develop altered breathing patterns, including:
- rapid shallow breathing
- upper chest breathing
- frequent sighing
- over-breathing (hyperventilation)
- muscle tension around the chest and neck
This can worsen symptoms and create a vicious cycle where the sensation of breathlessness becomes amplified.
Symptoms may include:
- air hunger
- dizziness
- tingling
- tight chest
- panic sensations
- difficulty “switching off” breathing awareness
Importantly, this does not mean the illness is psychological or “not real”. Dysfunctional breathing can happen alongside genuine lung disease.
Why Inhalers Sometimes Seem to Help Less
Reliever inhalers such as salbutamol (Ventolin) are designed mainly to relax tightened airways.
If breathlessness is being driven partly by breathing pattern dysfunction, muscle fatigue, inflammation, hypersensitivity, or air trapping, inhalers may not always provide dramatic relief.
This can be confusing and upsetting for patients.
“But My Tests Are Normal…”
Many patients feel frustrated, frightened, or even dismissed when told that oxygen levels, peak flow readings, or chest examinations are “fine” despite severe breathlessness.
Normal oxygen saturations are reassuring in terms of immediate danger, but they do not always reflect the full experience of chronic respiratory illness.
Breathlessness is influenced by many factors including inflammation, airway sensitivity, breathing effort, muscle fatigue, anxiety associated with struggling to breathe, and altered breathing patterns.
Because of this, some people may feel profoundly breathless even when routine measurements appear relatively stable.
It can sometimes help to explain symptoms in practical, functional terms, such as:
- “I become breathless walking across the room.”
- “I recover much more slowly than usual.”
- “This feels much worse than my normal baseline.”
- “I feel exhausted by the effort of breathing.”
- “Breathing exercises seem to help settle things.”
These descriptions may help healthcare professionals understand how symptoms are affecting day-to-day life, rather than focusing only on oxygen levels or peak flow numbers.
Some patients also find it helpful to ask questions such as:
- Could breathing pattern dysfunction be contributing?
- Would respiratory physiotherapy help?
- Would pulmonary rehabilitation be appropriate?
- How should I judge when symptoms need urgent assessment?
Importantly, severe breathlessness should never simply be ignored. New, worsening, or unusual symptoms still require proper medical assessment.
At the same time, many people with chronic lung disease experience very real symptoms that are not always fully reflected by routine measurements alone.
Why Breathlessness Can Feel So Frightening
The sensation of breathlessness is created by the brain interpreting signals from the lungs, breathing muscles, chest wall, blood chemistry, and nervous system.
This means that the feeling of “not getting enough air” is not determined only by oxygen levels.
In chronic lung disease, several things can trigger the sensation of breathlessness, including:
- inflamed or sensitive airways
- extra effort needed to move air in and out
- air trapping in the lungs
- muscle fatigue
- rapid or shallow breathing
- stress hormones released during breathing distress
- heightened awareness of breathing sensations
When breathing becomes uncomfortable, the body naturally responds with anxiety and adrenaline. This is a protective survival response.
Unfortunately, this can sometimes create a cycle:
breathlessness → anxiety → faster breathing → more chest tightness → worse breathlessness
This does not mean symptoms are “psychological”. The physical sensation is real, but the body’s alarm systems can unintentionally amplify it.
What Can Help During an Episode of Breathlessness?
Different techniques help different people, and severe or rapidly worsening symptoms should always be medically assessed. However, some patients find the following approaches helpful during episodes of distressing breathlessness:
Slow the Breathing Rate
Trying to slow breathing gently can help reduce over-breathing and chest tightness.
Some people find it helpful to:
- breathe in gently through the nose
- breathe out slowly through pursed lips
- focus on making the out-breath longer than the in-breath
Use a Recovery Position
Sitting forward slightly with the arms supported on knees or a table can sometimes reduce the work of breathing.
Reduce Panic and “Air Hunger”
Trying to fight for bigger and bigger breaths can sometimes worsen symptoms.
Some patients find it more helpful to focus on:
- gentle breathing rhythm
- relaxing the shoulders and neck
- slowing breathing rather than deepening it
- focusing attention away from the chest where possible
Use Prescribed Treatments Appropriately
Follow the advice provided by your healthcare team regarding inhalers, nebulisers, airway clearance, or rescue medication.
If inhalers are not helping as expected, this should be discussed with a respiratory specialist rather than simply increasing use repeatedly.
Know Your “Usual” Pattern
Many patients find it useful to learn the difference between:
- their “usual” chronic breathlessness
- breathing pattern dysfunction or over-breathing episodes
- symptoms suggesting infection or acute deterioration
This can help patients feel more confident recognising when urgent medical assessment may be needed.
Can Breathing Retraining Help?
Some patients find breathing retraining exercises very helpful, especially when guided by:
- respiratory physiotherapists
- specialist breathing services
- pulmonary rehabilitation teams
- asthma nurse specialists
Breathing retraining may include:
- slowing breathing rate
- diaphragmatic (“belly”) breathing
- nasal breathing techniques
- recovery breathing positions
- relaxation techniques
- paced activity and pacing strategies
Some NHS respiratory teams recommend online breathing resources and guided exercises to help patients recognise and manage over-breathing patterns.
These approaches are usually intended to work alongside medical treatment — not instead of it.
Living With an “Invisible” Symptom
One of the hardest aspects of chronic breathlessness is that outward signs may not always match how severe symptoms feel internally.
Many patients report feeling dismissed when oxygen levels are normal or when tests appear “better than expected”.
The experience of breathlessness is real, even when routine measurements do not fully explain it.
This is one reason why specialist respiratory assessment can be important in complex conditions such as aspergillosis.
When to Seek Medical Help
You should seek urgent medical advice if breathlessness is:
- suddenly worsening
- associated with chest pain
- causing blue lips or fingertips
- associated with falling oxygen saturations
- accompanied by fever or signs of infection
- causing confusion or severe exhaustion
- significantly different from your usual symptoms
Even if previous episodes have been related to breathing pattern dysfunction, new or worsening symptoms should still be medically assessed.
Further Support
You may also find these resources helpful:
Last reviewed: May 2026
Produced by: National Aspergillosis Centre CARES Team / Aspergillosis Website
ABPA or Steroid Side Effects? Understanding Symptoms During Long-Term Treatment

Last reviewed: April 2026
Many people living with Allergic Bronchopulmonary Aspergillosis (ABPA) who take long-term steroids find it difficult to tell whether their symptoms are caused by the condition or the treatment.
Symptoms in ABPA can come from both the condition and long-term steroid treatment. Fatigue, weakness, mood changes, and general unwellness are common to both, making it difficult to identify a single cause without clinical review.
This is especially true for people taking corticosteroids such as methylprednisolone or prednisolone.

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Key Points
- ABPA and steroid treatment can cause overlapping symptoms.
- Fatigue, low mood, and general unwellness can come from either the condition or medication.
- Long-term corticosteroid use can cause additional side effects.
- It is common to feel unsure what is causing symptoms.
- Ongoing or worsening symptoms should be discussed with your healthcare team.
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Why is it hard to tell the difference?
ABPA is an immune-driven lung condition that causes inflammation. Treatment often includes corticosteroids such as methylprednisolone or prednisolone, which reduce inflammation but can also affect many systems in the body.
This means that:
- The disease itself can cause symptoms
- The treatment can also cause symptoms
As a result, people often experience a combination of both.
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Symptoms caused by ABPA
ABPA commonly affects the lungs but can also cause more general symptoms.
- Fatigue and low energy
- Breathlessness
- Cough and mucus production
- Chest tightness
- General feeling of being unwell
Fatigue can be particularly prominent, especially during flare-ups.
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Side effects of long-term steroids
Corticosteroids such as methylprednisolone are highly effective treatments, but long-term use can lead to a range of side effects.
- Fatigue and weakness (including muscle loss)
- Mood changes (anxiety, low mood, irritability)
- Easy bruising (skin becomes thinner)
- Stomach irritation or pain
- Dizziness or feeling unwell
- Sweating
- Bone or joint discomfort
Learn more about treatment approaches in aspergillosis treatment options.
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Where symptoms overlap
Some symptoms can be caused by both ABPA and steroid treatment, making them difficult to interpret.
| Symptom | Possible cause |
|---|---|
| Fatigue | ABPA inflammation or steroid effects |
| Low mood / anxiety | Medication effects or impact of chronic illness |
| Weakness | Muscle loss from steroids or reduced activity |
| General unwell feeling | Both |
This overlap is one of the most challenging aspects of long-term management.
🔎 Not sure what’s causing your symptoms?
Many people with ABPA feel exactly the same—this overlap is one of the most common challenges during long-term treatment.
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Understanding specific symptoms
Some symptoms are more commonly linked to treatment effects:
- Easy bruising – often related to steroid use
- Heel or ankle pain – may relate to tendon or joint effects
- Stomach pain – can be linked to steroid irritation
Other symptoms, such as fatigue, dizziness, and nausea, may have multiple possible causes.
Because of this, it is often not possible to attribute symptoms to a single cause without clinical review.
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When to seek medical advice
You should contact your healthcare team if you experience:
- Persistent or worsening fatigue
- New dizziness or nausea
- Ongoing stomach pain
- Increasing weakness
- Mood changes affecting daily life
These symptoms do not necessarily indicate a serious problem, but they may mean that treatment or support needs to be reviewed.
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Summary
In ABPA, symptoms such as fatigue, weakness, and low mood can arise from both the condition and its treatment. Long-term steroid use can add additional effects, making it difficult to distinguish between causes.
If symptoms are persistent or worsening, it is important to discuss them with your healthcare team so that appropriate adjustments or support can be considered.
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Further Reading
- Allergic Bronchopulmonary Aspergillosis (ABPA)
- Treatment of Aspergillosis
- Weight Loss and Weakness in Aspergillosis
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Author & Review
Prepared for aspergillosis.org to support patient understanding. Content reflects current clinical knowledge and patient-reported experience.
Disclaimer
This information is for general education only and does not replace advice from your healthcare team.
Weight Loss and Weakness in Aspergillosis: Why It Happens, How It Feels, and What Helps Recovery

Last reviewed: April 2026
Unexpected weight loss and severe weakness are among the most worrying symptoms people report after being diagnosed with aspergillosis. Many describe feeling unlike themselves—physically drained, thinner than they have ever been, and struggling with everyday activities.
This article explains why this happens, what is going on in the body, and what recovery typically looks like.
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Key Points
- Weight loss and fatigue are common in aspergillosis, particularly early in the illness or during flare-ups.
- They are usually caused by a combination of inflammation, increased energy use, reduced appetite, and muscle loss.
- Medication side effects can contribute but are rarely the main cause.
- Many people improve over time, but recovery is usually gradual and can take weeks to months.
- Stabilising weight is often the first important step before regaining strength.
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Contents
- Why does aspergillosis cause weight loss?
- What is happening inside the body?
- Which types of aspergillosis are affected?
- Why does it feel so severe?
- Does it get better?
- What can help day to day?
- Nutrition and rebuilding strength
- When to seek medical advice
- Common questions
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Why does aspergillosis cause weight loss?
Weight loss in aspergillosis is rarely due to a single cause. Instead, it is usually the result of several overlapping processes.
1. Increased energy use (hypermetabolism)
When the body is dealing with infection or inflammation, it requires more energy. This is sometimes described as a hypermetabolic state.
- The immune system is active and consumes energy
- The body produces inflammatory signals
- Breathing effort may increase
This means you may be burning more calories than usual—even at rest.
2. Reduced appetite
Many people notice they are eating less, sometimes without realising it. This may be due to:
- Feeling unwell or fatigued
- Shortness of breath when eating
- Changes in appetite driven by inflammation
3. Medication effects
Some treatments can affect appetite or digestion. For example:
- Antifungal medications such as itraconazole or voriconazole may cause nausea or taste changes
- Steroids may increase appetite but can also contribute to muscle weakness over time
Medication effects vary widely and are usually only part of the overall picture.
4. Muscle breakdown
During illness, the body may break down muscle to meet energy needs. This can happen quickly, especially if activity levels fall.
This leads to:
- Loss of strength
- Reduced stamina
- A feeling of being “weak” rather than just lighter
5. Underlying lung disease
Many people with aspergillosis also have conditions such as bronchiectasis, asthma, or chronic obstructive pulmonary disease (COPD). These can increase the effort required for breathing and contribute to ongoing energy use.
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What is happening inside the body?
Several biological processes contribute to weight loss and fatigue:
- Inflammatory signalling: The immune system releases chemical signals that affect metabolism and appetite
- Catabolism: The body breaks down tissues (including muscle) to release energy
- Energy imbalance: More energy is used than consumed
This combination can make weight loss feel rapid and difficult to control.
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Which types of aspergillosis are affected?
These symptoms are most commonly seen in:
- Chronic Pulmonary Aspergillosis (CPA)
- Allergic Bronchopulmonary Aspergillosis (ABPA), particularly during flare-ups
However, not everyone experiences weight loss, and severity varies.
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Why does it feel so severe?
Many people describe this stage as one of the most difficult parts of their illness. This is because several factors are happening at once:
- Physical energy is reduced
- Muscle strength has declined
- The body is under ongoing stress
- Recovery has not yet begun
This can make everyday activities—such as walking, cooking, or even eating—feel unusually difficult.
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Does it get better?
In many cases, yes—there is gradual improvement over time, especially once treatment begins to control the condition.
Recovery often follows a pattern:
- Initial phase: weight loss and severe fatigue
- Stabilisation: weight loss slows or stops
- Recovery: gradual return of strength and energy
This process is usually slow and uneven, with good and bad days.
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What can help day to day?
1. Focus on maintaining nutrition
- Eat small amounts regularly rather than large meals
- Choose foods that are easy to prepare and eat
- Include protein to support muscle maintenance
2. Pace activity carefully
- Gentle movement can help maintain strength
- Avoid pushing too hard, as this can worsen fatigue
- Increase activity gradually as energy improves
3. Look at trends over time
It can be helpful to focus on gradual changes such as:
- Weight stabilising
- Small improvements in energy
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Nutrition and rebuilding strength
Recovery often happens in stages:
- Stage 1: Stabilising weight
- Stage 2: Gradually increasing intake
- Stage 3: Rebuilding muscle and strength
Regaining muscle mass takes time and usually follows once the underlying condition is better controlled.
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When to seek medical advice
You should contact your healthcare team if you experience:
- Continued or rapid weight loss
- Increasing weakness
- Difficulty eating or swallowing
- New or worsening symptoms
This may indicate the need for additional support or adjustment of treatment.
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Common questions
Is weight loss just due to poor appetite?
No. Reduced appetite is only one factor. Increased energy use and muscle loss are also important contributors.
Are medications the main cause?
Medications can contribute, but they are rarely the main reason for weight loss.
Will I regain my strength?
Many people do regain strength over time, although recovery is usually gradual.
Why does recovery take so long?
The body needs time to reduce inflammation, restore energy balance, and rebuild muscle.
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Summary
Weight loss and weakness in aspergillosis are common and can feel severe, particularly early in the illness. They are usually caused by a combination of increased energy use, reduced appetite, muscle loss, and underlying lung disease.
Although recovery can take time, many people improve gradually as treatment takes effect.
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Further Reading
- Chronic Pulmonary Aspergillosis (CPA)
- Allergic Bronchopulmonary Aspergillosis (ABPA)
- Treatment of Aspergillosis
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Author & Review
Prepared for aspergillosis.org to support patient understanding. Content reflects current clinical knowledge and patient-reported experience.
Disclaimer
This page is for general information only and does not replace advice from your healthcare team.











