đŸ« Is It an ABPA Flare or a Bronchiectasis Flare? How to Tell the Difference

If you have aspergillosis, especially ABPA (Allergic Bronchopulmonary Aspergillosis) and bronchiectasis, it can be hard to know which one is flaring up when your lungs feel worse. They often overlap — but there are some clues that can help.

🔍 How the Two Conditions Are Different

Feature ABPA Flare (Allergic Reaction to Aspergillus) Bronchiectasis Flare (Infection in Damaged Airways)
Main cause Your immune system reacting to Aspergillus Infection in widened, inflamed airways
Symptoms you may notice - Chest tightness or wheezing
- Thick, sticky mucus
- Feeling more tired
- Occasional low-grade fever		 - Wet cough with more sputum
- Sputum changes colour (green/yellow)
- Fever, chills, or general unwell feeling
How it starts May come on gradually or after exposure to damp/mould Often starts after a cold or virus
What helps most Steroids (inhaled or oral), sometimes biologics Antibiotics and chest physiotherapy
What tests may show - Raised IgE or eosinophils
- CT may show mucus plugs		 - Raised CRP or white cells
- Sputum may grow bacteria or fungus
What to ask your doctor “Is my IgE or eosinophil count up?” “Do I need a sputum test or antibiotics?”

🧭 What Can You Do as a Patient?

  • 📝 Keep a symptom diary – especially note changes in:

    • Sputum colour or amount

    • Wheezing or chest tightness

    • Tiredness or sleep quality

  • đŸ§Ș Ask for the right tests:

    • Blood tests like IgE and eosinophils for ABPA

    • CRP, white blood count, and sputum tests for bronchiectasis

  • đŸ©ș Don’t guess or self-treat – steroids and antibiotics work in different ways, and using the wrong one can make things worse or mask important signs.

💬 Final Thought

It's very common for people with aspergillosis to feel confused by flare-ups — you're not alone. Learning to spot your own patterns, and getting support from your specialist team, can make a real difference.

by GAtherton

How can we, as patients, support or raise our voices to bring more focus to ABPA in the medical and research world?

From what I see and feel, it seems that not many researchers or pharmaceutical companies are actively pursuing new treatments for ABPA. Maybe it’s because it’s considered a rare disease, and doesn't bring as much commercial profit as more common conditions like asthma or cystic fibrosis.
But for those of us living with it, ABPA can be life-disrupting — with symptoms like:
Constant mucus and congestion
Breathing difficulties
Chest tightness and fatigue
Fear of long-term lung damage
Even though we may not be large in number, we are still real people facing real struggles — waiting and hoping for better treatment options and more attention.
I deeply appreciate the work being done by the National Aspergillosis Centre, especially in raising awareness and supporting patients like me.🙏
But I wanted to ask respectfully: 👉 Is more active research or clinical development happening specifically for ABPA therapies?
👉 How can we, as patients, support or raise our voices to bring more focus to ABPA in the medical and research world?

You're absolutely right that ABPA (Allergic Bronchopulmonary Aspergillosis) often sits in the shadow of more widely recognised diseases like asthma, cystic fibrosis, and even chronic pulmonary aspergillosis (CPA), despite the daily impact it has on breathing, energy, and quality of life for those affected. Here's a comprehensive response to your two key questions:

👉 Is more active research or clinical development happening specifically for ABPA therapies?

✅ Some research is happening — but it's limited and fragmented.

  • ABPA is considered a rare disease (likely fewer than 10,000 diagnosed in the UK), so it doesn’t attract the same commercial research attention as asthma, cystic fibrosis (CF) or chronic obstructive pulmonary disease (COPD)..

  • ABPA overlaps with asthma, cystic fibrosis, and bronchiectasis, which means treatments often come from those areas — but are not tailored to ABPA patients.

💊 Existing therapies are adapted, not designed for ABPA:

  • Steroids (oral or inhaled) remain first-line, but long-term use has harmful side effects.

  • Azole antifungals (like itraconazole or voriconazole) are used to reduce fungal burden — but responses vary, side effects are common, and resistance is rising.

  • Biologics (like omalizumab, mepolizumab, dupilumab, and now tezepelumab) are showing promise in small studies and real-world experience — but none are licensed specifically for ABPA, which means access is inconsistent and often requires individual funding requests (IFRs).

🔬 Ongoing research and development (as of 2025):

  • Japan and India are leading some ABPA-specific studies, especially around imaging, IgE trends, and steroid-sparing strategies.

  • Small studies and case series are evaluating biologic therapies in ABPA, particularly in:

    • Asthma + ABPA overlap

    • CF + ABPA overlap

    • Bronchiectasis + ABPA cases with poor control

  • No current large-scale Phase 3 trials for ABPA-specific therapies are active in the UK or Europe, though there is growing academic interest at centres like Manchester (NAC) and Royal Brompton and specialist centres across Europe.

👉 How can we, as patients, raise our voices to bring more focus to ABPA?

đŸ—Łïž 1. Share your story

  • Personal experiences — like the one you just shared — are powerful advocacy tools. NAC and Aspergillosis Trust are regularly asked to provide volunteers to talk about their experiences for national media stories - when they happen there is usually little time to respond so leaving your contact details with Aspergillosis Trust or NAC can be a way to help raise awareness.

  • Blogs, social media, patient interviews, or videos can humanize the condition for researchers, clinicians, and policymakers.

  • You could contribute to aspergillosis.org, BLF, or Rare Disease UK platforms.

💬 2. Engage with research centres

  • The National Aspergillosis Centre (NAC) is uniquely placed to drive research.

  • Ask to be part of patient advisory panels, surveys, or focus groups — your lived experience helps shape research priorities. There is currently a Europe-wide group run by the European Lung Foundation (Aspergillosos PAG) that is designed to do exactly this, and here at NAC we periodically ask for volunteers to help run clinical trials in the UK, usually via our Facebook or Telegram groups.. The Aspergillosis Trust are also occasionally asked to suggest volunteers for trials, so it is well worth engaging with them too. There is no obligation, just join to see what is going on! Every extra person in advocacy groups gives the group more awareness power.

  • Inquire whether NAC is seeking trial participants, or if they plan to study ABPA-specific uses of biologics.

✍ 3. Support and pressure through policy

  • Add your voice to calls for biologic licensing for ABPA.

  • Back campaigns like Accelerating Access to Rare Disease Therapies (via Genetic Alliance or Rare Disease UK).

  • Contact your local MP or ICB (Integrated Care Board) to raise access issues — such as Individual Funding Request (IFR) delays or biologic refusals.

đŸ€ 4. Connect with others

  • ABPA-specific support groups (e.g. through NAC, Facebook groups, or Zoom meetups) allow patients to:

    • Share coping strategies

    • Create collective pressure

    • Support research studies via recruitment or funding

📈 5. Help build data

  • ABPA is under-diagnosed and under-coded in NHS data — meaning we don’t know how many people truly have it.

  • Participating in registries, audits, or quality-of-life research helps build a case for investment and clinical guidelines.

✹ Final Thoughts

You are right to point out that the scale of suffering from ABPA is real — even if it doesn't generate headlines. That makes patient voices even more essential. The good news is: the more we talk about ABPA, the more momentum we can build. Already, biologics are gaining attention — but formal ABPA trials, compassionate-use programs, and NHS funding clarity are still needed.

Let me know if you'd like help writing a patient statement, connecting with a researcher, or forming a focus group to bring these issues forward. You could help shape the next chapter of ABPA care.

You're doing more than you realise by speaking out. 👏

by GAtherton

Living Well with ABPA: A Practical Guide to Preventative Living and a Low-Risk Home

This guide is for people living with Allergic Bronchopulmonary Aspergillosis (ABPA), chronic fungal lung conditions, or other respiratory diseases that increase sensitivity to infections and environmental triggers. It combines expert-informed advice with practical strategies patients like Alison use to stay well, especially through winter.

🔗 Quick Navigation

Section 1: What Is Preventative Living?

Preventative living means taking small, proactive steps to reduce your exposure to fungal spores, infections, and environmental risks that can cause lung flares.

"I'm not over-cautious — I just evaluate risks. Lowering my expectations in winter has helped me stay well without feeling cut off." – Alison

Preventative living is not about fear — it’s about protecting your lungs and managing your energy, so you can live confidently and safely.

Section 2: Managing Risk During Winter

  • Wear FFP2 masks in crowded or poorly ventilated indoor spaces.
  • Prioritise venues with good air exchange (e.g. open windows or HVAC).
  • Stay socially connected through video calls or small outdoor gatherings.
  • Reduce physical contact when flu, COVID-19, or RSV are widespread.
  • Let family/friends know you’re managing a health condition, not avoiding them.

Section 3: Vaccination – Your First Line of Defence

Vaccination reduces the risk of severe illness from common respiratory viruses. Stay current with:

  • Annual flu vaccine
  • COVID-19 boosters
  • Pneumococcal vaccine
  • Shingles vaccine (if eligible)
  • RSV vaccine (for older adults and those with chronic lung disease)

Section 4: Keeping Your Home a Low-Risk Zone

Your home should be the safest place for your lungs. Here's how to reduce airborne risks:

4.1 Ventilation

  • Open windows when air quality is good
  • Use extractor fans in bathrooms and kitchens
  • Check air quality forecasts before airing out rooms
  • Use cross-ventilation where possible to create airflow
  • Avoid ventilation near high-traffic roads during peak hours

4.2 HEPA Air Filtration

  • Use a true HEPA filter, not "HEPA-type"
  • Make sure it's correctly sized for the room (check CADR ratings)
  • Bedroom units typically need CADR ~150+, living rooms ~300–500+
  • Run the filter continuously, not just occasionally
  • Place centrally or near breathing zone (not hidden in corners)

4.3 Damp and Mould Control

  • Use dehumidifiers if humidity is regularly above 60%
  • Run extractor fans during and after showers/cooking
  • Wipe down wet windowsills or condensation daily
  • Clean any visible mould using antifungal or bleach-based cleaners (never dry scrub)
  • Check for structural issues like leaks, damp walls, or poor insulation

4.4 Houseplants and Soil

  • Avoid disturbing soil (e.g. repotting) indoors
  • Add decorative pebbles or coverings to suppress soil spore release
  • Remove or treat plants with visible mould or poor drainage
  • Do not store compostable food waste indoors — empty daily to outdoor bins
  • Use gloves and a mask when handling potting mix or plant waste

Section 5: Cleaning and Dust Control

“Dust is your enemy.”

  • Use a vacuum with a built-in HEPA filter weekly.
  • Damp dust surfaces with a microfibre or moistened cloth (not dry dusting).
  • Wash bedding at 60°C weekly to kill dust mites and remove spores.
  • Use dust-mite proof covers on pillows and mattresses.
  • Declutter rooms to reduce places for dust to collect.
  • Remove or reduce wall-to-wall carpets, especially in sleeping areas.

Section 6: Antibiotics, Fungal Risk, and Immune Suppression

If you're using steroids, biologics, or long-term antibiotics, you may be more vulnerable to fungal infections.

  • Antibiotics can suppress bacterial flora and promote fungal overgrowth.
  • Infectious Diseases (ID) specialists will weigh your infection and colonisation risks.
  • Ask about alternatives like Hiprex (methenamine hippurate) for UTI prevention.
  • Ensure regular surveillance if you’re on immune-suppressing therapy (e.g. sputum culture, IgE levels, Aspergillus PCR).

Section 7: Talking to Family and Friends

Here’s how to explain your approach:

"I’m not avoiding people — I’m managing my condition. I still want to stay connected, but I may skip events where the risk is high. Thank you for understanding."

Practical Suggestions:

  • Invite others to meet for a walk or outdoor coffee
  • Use video calls, group chats, or watch-alongs to stay connected
  • Plan in-person visits for spring or summer when risk is lower
  • Let others know that small accommodations (like good ventilation or masking) help you attend more comfortably

Summary: A Balanced Approach to Everyday Safety

You can live well with ABPA by:

  • Reducing exposure to fungal and viral triggers
  • Keeping your home dry, clean, and well-filtered
  • Using medications wisely, in coordination with your care team
  • Protecting yourself socially and medically
  • Communicating your boundaries clearly but confidently

Preventative living is not about isolation — it’s about keeping your lungs safe so you can keep living life your way.

 

by GAtherton

đŸ« Understanding ABPA: When and Why It Appears, and Who’s at Risk

Allergic Bronchopulmonary Aspergillosis (ABPA) is a chronic allergic lung condition that’s often misunderstood or misdiagnosed — especially when it appears for the first time in adulthood. This article answers key questions:

  • Why does ABPA usually develop later in life?

  • Can it be diagnosed earlier?

  • What about severe asthma in children — is that an exception?

  • Are there groups at special risk, like those with cystic fibrosis?

This guide is designed for patients, carers, and anyone living with or at risk of ABPA.

đŸ”č 1. What Is ABPA?

ABPA is a hypersensitivity reaction (not a fungal infection) to the fungus Aspergillus fumigatus, which is found in the air we breathe.

In people with asthma, cystic fibrosis (CF), or structurally damaged lungs, Aspergillus can settle in the airways and trigger a strong allergic immune response, causing:

  • Swollen and inflamed airways

  • Mucus build-up that’s hard to clear

  • Worsening of asthma or coughing

  • Irreversible lung damage (e.g. bronchiectasis) if untreated

🔎 2. Why Is ABPA Usually Diagnosed in Adulthood?

Despite being linked to asthma — often a childhood condition — most cases of ABPA are diagnosed in adulthood, typically between ages 20 and 50.

Why? Because ABPA is only diagnosed when several things happen at the same time:

  • High total IgE levels

  • Positive Aspergillus-specific IgE or IgG

  • Lung symptoms like wheezing, cough, mucus

  • CT evidence of mucus plugging or early bronchiectasis

A person might be allergic to Aspergillus (sensitised) for years without having ABPA. Only when their immune system crosses a certain threshold — sometimes after a viral illness, fungal exposure, or change in immune function — does full ABPA emerge.

This helps explain why many people are diagnosed for the first time in their 30s or later, even with a history of asthma.

🧒 3. Is ABPA Ever Diagnosed in Childhood?

✅ Yes — but it’s rare.

There are a few specific exceptions:

🔾 A. Cystic Fibrosis (CF)

  • ABPA is much more common in people with CF — including older children and teenagers.

  • CF causes thick mucus and impaired airway clearance, which promotes persistent exposure to Aspergillus.

  • That’s why CF care guidelines include annual ABPA screening from a young age.

🔾 B. Severe asthma in childhood

  • Children with very severe or poorly controlled asthma may have:

    • High IgE

    • Mucus build-up

    • Sensitisation to Aspergillus

  • These children may develop fungal allergic airway disease or be labelled as having SAFS (Severe Asthma with Fungal Sensitisation).

  • Full ABPA may still not be diagnosed until later adolescence or adulthood — but these cases may represent a kind of “pre-ABPA.”

🔾 C. Rare immune disorders

  • Conditions like hyper-IgE syndrome (HIES) or chronic granulomatous disease may cause early ABPA-like features.

  • These are rare and usually managed by immunology specialists.

⚖ 4. What’s the Difference Between ABPA, SAFS, and Sensitisation?

Condition Description Age group
Aspergillus sensitisation Immune system reacts to fungus, but no lung damage or ABPA symptoms Any age
SAFS Severe asthma + Aspergillus allergy, but does not meet full ABPA criteria Mostly teens and adults
ABPA Allergy to Aspergillus + lung damage, high IgE, mucus, flare-ups Usually adults, sometimes teens with CF

đŸ§Ș 5. Could a Screening Test Detect ABPA Earlier?

Not currently — but research is ongoing.

Today, ABPA is diagnosed based on a set of criteria (IgE levels, imaging, symptoms), not a single test. That means:

  • Early warning signs may be present for years

  • But ABPA is only diagnosed once enough features appear together

A future screening test for “pre-ABPA” could:

  • Identify at-risk individuals earlier

  • Allow close monitoring

  • Help start treatment at the first signs of disease

This wouldn’t “prevent” ABPA in every case, but could reduce its severity and protect lung function.

💡 6. Can ABPA Be Prevented?

We can’t fully prevent ABPA — but we can reduce risk and prevent long-term damage:

Strategy What It Helps Prevent
Reduce fungal exposure (damp, compost, hay) Immune flare-ups, new sensitisation
Monitor at-risk patients (CF, severe asthma) Missed early signs
Treat asthma or CF aggressively Mucus build-up and fungal colonisation
Investigate persistent cough/mucus or asthma flares Delayed ABPA diagnosis
Use steroids/antifungals/biologics when needed Inflammation, progression to bronchiectasis

📘 7. Summary: Key Takeaways

Question Answer
Is ABPA a childhood disease? No, it’s usually diagnosed in adults, even those with childhood asthma
Can it appear in children? Rarely — mostly in CF, severe asthma, or immune disorders
Why isn’t it diagnosed earlier? It requires multiple features to appear at the same time
Can it be stopped before it starts? Possibly in future — early monitoring could reduce damage, even if it doesn’t prevent ABPA
What should I do? Avoid triggers, manage asthma/CF well, seek early specialist input for unexplained symptoms

đŸ—Łïž Patient Tip

“If you’ve just been diagnosed in your 30s, 40s or later — that doesn’t mean it was missed. It means it’s finally been recognised, and now you can get the right treatment.”

by GAtherton

Understanding ABPA: A Patient Guide to Managing Allergic Bronchopulmonary Aspergillosis

Being newly diagnosed with ABPA (Allergic Bronchopulmonary Aspergillosis) can feel overwhelming, especially when faced with complicated information online. You may hear about disease stages, possible complications, and unfamiliar terms. This guide is here to reassure you: ABPA is a manageable condition, and with the right treatment and monitoring, many people live full and active lives.

What Is ABPA?

ABPA is an allergic reaction in your lungs caused by a fungus called Aspergillus fumigatus. It's more likely to affect people with existing lung conditions such as:

  • Asthma
  • Bronchiectasis
  • Cystic fibrosis (in some cases)

The immune system overreacts to the presence of Aspergillus, leading to inflammation, mucus buildup, and sometimes long-term lung changes.

Can ABPA Become CPA?

Some people worry that ABPA might turn into CPA (Chronic Pulmonary Aspergillosis), a separate fungal lung infection.

  • This only happens in a small number of people, usually those with severe lung damage or cavities.
  • If ABPA is well-managed early, the chances of developing CPA are very low.
  • Your care team can monitor for this with scans and blood tests.

The 5 Stages of ABPA: What Do They Mean?

The stages of ABPA are used by doctors to describe how the disease behaves, not to predict life expectancy.

Stage What It Means
1 Acute: Flare-up with symptoms and high IgE
2 Response to treatment
3 Remission: Symptoms and inflammation settle
4 Relapse: New flare-up after remission
5 Fibrotic: Long-term scarring in the lungs

Even Stage 5 is not a death sentence. Some people live in this stage for many years with stable symptoms. It just means that some lung changes have become permanent.

Key Goals of ABPA Management

With the right care, people with ABPA can:

  • Prevent long-term lung damage
  • Reduce flare-ups
  • Stay active and independent

Your treatment may include:

  • Corticosteroids to reduce inflammation
  • Antifungal medications (like itraconazole) to reduce fungal burden
  • Biologics (like omalizumab or dupilumab) in some cases
  • Mucus clearance physiotherapy
  • Environmental control to reduce exposure to mould and dust

What You Can Do to Stay Well

  • Stick to your treatment plan and attend regular check-ups
  • Monitor symptoms like coughing, mucus, breathlessness or chest pain
  • Practice good airway clearance techniques
  • Avoid triggers: e.g., mould, compost, damp areas
  • Seek support: Patient groups, nurses, respiratory therapists can help

Final Reassurance

Being diagnosed in February means you are still early in your journey, and that’s a good thing. You have time to learn, adapt, and manage your condition.

ABPA does not mean you are dying — it means you are living with a chronic condition that can be controlled with the right tools and knowledge.

You are not alone, and with support, you can live well with ABPA.

by GAtherton

đŸ« ABPA Treatment: Why Are Steroids First, Even if They Can Increase Fungal Growth?

If you've been diagnosed with Allergic Bronchopulmonary Aspergillosis (ABPA), you may have heard that treatment often starts with oral steroids like prednisolone. But ABPA is triggered by a reaction to the Aspergillus fungus — so why use a treatment that might actually let that fungus grow more?

It’s a great question. This guide explains why steroids are still often the first step, what other treatments are available, and when they might be used.

🌿 What Is ABPA?

ABPA is not an infection — it’s an allergic immune reaction in the lungs to the fungus Aspergillus fumigatus. This overreaction causes:

  • Lung inflammation

  • Mucus plugging

  • Breathlessness and wheezing

  • Possible long-term lung damage (e.g., bronchiectasis)

People with asthma or cystic fibrosis are more likely to develop ABPA.

💊 Why Are Steroids Usually the First Treatment?

đŸ”„ The key problem in ABPA is inflammation, not the fungus itself.

Steroids like prednisolone are often used first because they:

  • Act quickly to calm the allergic immune reaction

  • Reduce inflammation and mucus

  • Help relieve symptoms fast (wheezing, tight chest, breathlessness)

  • Prevent long-term damage if started early

Even though steroids may allow some fungal growth, their fast action against inflammation is often more important — especially in flare-ups.

🍄 What About Antifungal Treatments?

Antifungals like itraconazole or posaconazole reduce the amount of Aspergillus in the lungs. This helps to:

  • Reduce allergic triggers

  • Prevent future flare-ups

  • Lower the need for steroids

However, antifungals:

  • Take weeks to work

  • Don’t control inflammation well on their own during a flare

  • Can have side effects and interact with other medications

âžĄïž That’s why they are often used after steroids, or alongside them — especially in people who flare up often or need steroids long term.

🧬 What About Biologics?

Biologic therapies like:

  • Omalizumab (anti-IgE)

  • Dupilumab (blocks IL-4 and IL-13)

  • Mepolizumab (anti-IL-5)


are used to help regulate the immune system in patients who:

  • Can’t tolerate steroids

  • Have frequent relapses

  • Need ongoing treatment despite antifungals

Biologics can help:

  • Reduce steroid use

  • Lower flare frequency

  • Improve asthma control

But they’re not yet approved as first-line treatments and are generally reserved for more complex or persistent cases.

✅ What Happens If My Symptoms Are Mild?

Good question. In mild ABPA (e.g. stable breathing, low IgE, no major lung damage), specialists may:

  • Monitor closely before starting any treatment

  • Try antifungals alone, especially if steroid use is risky

However, regular follow-up is essential to make sure inflammation doesn’t silently worsen.

🔄 Typical ABPA Treatment Steps

Stage Treatment
First flare or moderate symptoms Steroids (short course) ± antifungals
Steroid side effects or long-term use Add antifungals
Recurrent or steroid-dependent ABPA Add or switch to biologics
Mild symptoms and stable lungs Possibly antifungals first (specialist decision)

🧘 Staying Well with ABPA

  • Follow your treatment plan closely

  • Keep lungs clear with mucus clearance techniques

  • Avoid damp, mouldy environments

  • Keep up with regular check-ups and lung tests

  • Let your team know if symptoms return

đŸ—šïž In Summary

Steroids are still first-line because they work fast to stop inflammation.
Antifungals and biologics are important longer-term options that help reduce fungal triggers and flare-ups — and may reduce or even replace steroids over time.

Every ABPA patient is different, and your care should be tailored to you.

by GAtherton

đŸ« Understanding ABPA, Bronchiectasis & Lung Cavities

A Patient’s Guide to What Happens in the Lungs – and What You Can Do About It

🌿 What is ABPA?

Allergic Bronchopulmonary Aspergillosis (ABPA) is a condition where the lungs react strongly to a common fungus called Aspergillus. This overreaction causes inflammation in the airways, making it harder to clear mucus and increasing the risk of flare-ups.

Many people with asthma or cystic fibrosis are more likely to develop ABPA, but it can affect others too.

🌀 What Happens to the Lungs?

Over time, repeated inflammation and mucus build-up can affect the structure of the airways. Here’s what can happen:

1. Bronchiectasis

  • The airways (bronchi) become widened and thickened.

  • This makes it harder to clear mucus, which can lead to more infections.

  • In ABPA, this usually affects the central parts of the lungs.

🔾 Bronchiectasis is not the same as a lung cavity. It’s a change in the shape of the airways, not a hole in the lung.

2. Lung Cavities (Less Common)

  • These are air-filled spaces that form when a small area of lung tissue is damaged or infected.

  • Cavities are less common in ABPA but can happen after repeated inflammation or infection.

  • They may look worrying on a scan, but often they are just monitored and don’t cause major issues unless they become infected.

đŸ©ș What About Lung Function?

ABPA and bronchiectasis can affect lung function, especially if not caught early.

  • Spirometry tests may show lower results if the airways are blocked or inflamed.

  • Some people improve after treatment; others may see a gradual decline.

  • Most patients still breathe well at rest, and many stay active with proper care.

đŸŒŹïž Will Cavities Leak Air?

This is a common worry. The answer is: usually not.

  • Most cavities in ABPA are not at risk of bursting or leaking.

  • Sudden breathlessness or chest pain should always be checked, but leaks (pneumothorax) are rare in ABPA.

📉 Does Everyone Get Cavities?

Not at all.

  • Around 50–90% of ABPA patients get some bronchiectasis.

  • Only a minority go on to develop true cavities.

  • Early treatment and regular check-ups help reduce the risk of further lung changes.

đŸ§Ș What About Oxygen Levels?

Many people with ABPA — even with bronchiectasis — still have normal oxygen levels (SpO₂):

  • Most rest between 95–98%

  • During a flare or infection, it might dip a little

  • If oxygen drops below 92%, your team may check more closely

🧘 What Can I Do to Stay Well?

  • đŸ©ș Stick to your treatment plan – antifungals, inhalers, or steroids if prescribed

  • 💹 Clear mucus regularly – ask about airway clearance techniques

  • đŸ§Œ Avoid damp, mouldy environments

  • 🍎 Stay active and eat well

  • 📆 Attend check-ups and lung function tests

  • 🚭 Avoid smoking or vaping (these can worsen damage)

💬 A Final Word

Having ABPA and some lung changes doesn’t mean life has to stop. Many people continue to live active, fulfilling lives. Even with bronchiectasis or small cavities, the focus is on prevention, staying stable, and getting support when needed.

by GAtherton

Managing ABPA: How to Protect Your Lungs and Stay Well

If you’ve been diagnosed with ABPA (Allergic Bronchopulmonary Aspergillosis), you’re probably already working to control inflammation and clear mucus from your lungs. These are essential steps—but there’s more you can do to protect your lung function and prevent long-term damage.

This guide will help you understand what matters most in managing ABPA and feeling your best.

✅ The Basics: What You're Probably Already Doing

1. Keep Inflammation Low

  • This means reducing your IgE levels and calming the immune system.

  • Your doctor may prescribe:

    • Steroids (like prednisolone)

    • Antifungal medication (like itraconazole or voriconazole)

    • In some cases, biologic treatments like omalizumab or mepolizumab

2. Clear Mucus Regularly

  • Mucus can trap infection and block your airways.

  • You might be using:

    • Airway clearance techniques (like chest physiotherapy or postural drainage)

    • Nebulised medications (saline or bronchodilators)

    • Mucus-thinning medicines (like carbocisteine or NAC)

These two steps are essential, but they’re not the whole picture.

💡 What Else Can Help You Stay Well?

3. Prevent Chest Infections

ABPA can lead to bronchiectasis, a condition where your airways get scarred and damaged. To help prevent this:

  • Treat infections early

  • Get regular chest scans to monitor changes

  • Stay up to date with vaccines (flu, pneumonia, COVID, etc.)

  • Your doctor may consider low-dose antibiotics if infections are frequent

4. Avoid Fungal Exposure

Aspergillus is a fungus found in the environment, especially in:

  • Compost, soil, or damp leaves (gardening can be risky)

  • Mouldy or damp areas in homes

  • Older buildings with water damage

Use air filters, wear a mask when needed, and keep your living space clean and dry.

5. Look After Your Overall Lung Health

  • Pulmonary rehabilitation (specialist-guided breathing and exercise therapy) can improve your stamina and lung function.

  • Practice breathing exercises daily.

  • Stay physically active in ways that are manageable for you.

6. Take Care of Your Body

Steroids can cause side effects over time, like bone thinning and fragile skin.

  • Make sure you're getting enough calcium and vitamin D

  • Ask your doctor about a bone density (DEXA) scan

  • Eat a balanced, anti-inflammatory diet and stay hydrated

7. Look After Your Mental Health

Living with ABPA can be exhausting. Fatigue, breathlessness, and medical side effects can affect your mood and confidence.

  • Track how you’re feeling—physically and emotionally

  • Talk to your care team about fatigue or mental health support if needed

  • You’re not alone—support groups and patient communities can really help

đŸ—Łïž Talk to Your Doctor About:

  • Biologic treatments (like omalizumab or mepolizumab) — these may help reduce steroid use

  • Sputum testing to catch early infections

  • Specialist referral to a severe asthma or lung clinic if needed

🧭 Summary: What to Focus On

What to Manage Why It Matters
Inflammation (IgE levels) Reduces flare-ups and long-term damage
Mucus clearance Keeps airways open and lowers infection risk
Chest infections Slows or prevents bronchiectasis
Environmental exposure Reduces fungal triggers
Exercise & breathing Supports stronger lungs and energy levels
Bone and general health Counters effects of long-term steroid use
Mental wellbeing Helps you stay strong and supported

Final Tip

Managing ABPA is a long-term journey, but you're not alone. With the right care, medications, and lifestyle changes, many people with ABPA are able to stabilise their condition and keep their lungs as healthy as possible.

by GAtherton

📘 Managing IgE Levels in ABPA: What Happens After Treatment?

If you have ABPA (Allergic Bronchopulmonary Aspergillosis), you’ve likely been told your IgE levels are high. Many patients ask:

“Once my IgE goes down with treatment, how do I keep it down without staying on steroids or antifungals forever?”

This guide explains why IgE is important, how it’s treated, and what long-term steps you can take to stay well.

đŸ§Ș What is IgE and Why Is It High in ABPA?

IgE (Immunoglobulin E) is an antibody your immune system makes in response to allergens. In ABPA, your immune system overreacts to Aspergillus, a common fungus, causing inflammation in the lungs. This leads to:

  • High total IgE levels (often over 1,000–10,000 IU/mL)

  • Symptoms like coughing, wheezing, and mucus plugs

  • Lung changes on scans, if untreated

🎯 Treatment Goals

Treatment aims to:

  • Lower inflammation

  • Reduce the fungal burden

  • Bring IgE levels down (a marker that your inflammation is settling)

  • Prevent long-term lung damage

You might be treated with:

  • Oral steroids (e.g. prednisolone)

  • Antifungal tablets (e.g. itraconazole or voriconazole)

These medications help bring IgE levels down, sometimes dramatically. But they can’t usually be taken forever — long-term use may cause side effects.

🔄 After IgE Drops – What Next?

Even after successful treatment, ABPA can flare up again. So the key questions become:

How do we keep IgE low?
How do we prevent future flare-ups?

🧭 Long-Term Management Options

1. Close Monitoring

  • IgE is checked every 2–6 months

  • Doctors look for a doubling in IgE — this can mean a flare is starting

  • Regular chest scans and lung function tests are also used to spot changes early

2. Tapering Medication

  • Steroids are slowly reduced, not stopped suddenly

  • Your doctor will watch for any return of symptoms or rise in IgE

3. Biologic Treatments

Some newer medications can help long-term, especially if you:

  • Have frequent flare-ups

  • Can’t reduce steroids safely

  • Have asthma or eosinophilic inflammation

These include:

  • Omalizumab (anti-IgE antibody)

  • Mepolizumab / Benralizumab (target eosinophils)

  • Dupilumab (blocks part of the allergy pathway)

Biologics are usually injections given every 2–4 weeks, and can help reduce relapses and steroid need.

🏡 Lifestyle & Environmental Tips

Reducing your exposure to Aspergillus can help keep IgE from rising again.

đŸ”č Avoid:

  • Damp or moldy areas

  • Compost, rotting leaves, hay, or soil dust

  • Rooms with poor ventilation

đŸ”č Use:

  • Ventilate your home well (eg open windows/extractor fans)

  • A HEPA-filter air purifier at home

  • An FFP2/FFP3 mask when doing dusty activities (gardening, cleaning mold)

đŸ„— Eat for Immune Support:

  • Anti-inflammatory foods (vegetables, oily fish, berries)

  • Reduce sugar (high sugar may promote inflammation)

  • Stay well hydrated

  • Ask your doctor about vitamin D — it may help regulate immunity

📅 Follow-up Schedule (General examples, yours may differ)

Time Since Treatment What to Expect
1–3 months Blood tests (IgE, eosinophils), lung check
3–6 months Check for symptoms, possibly repeat IgE
6–12 months CT scan or lung function, if needed
After 1 year Stable patients may have annual reviews

Let your team know if any symptoms return — even if your last IgE result was stable.

🧠 Final Thoughts

  • You may always have “elevated” IgE compared to someone without ABPA — that’s okay. The goal is stability, not “zero IgE”.

  • Many patients live well with ABPA for years by learning to manage flare-ups early and avoiding fungal exposure.

  • Ask your clinic about your personal IgE pattern — some people flare with small changes; others don’t.

  • Support groups and educational resources (like aspergillosis.org) can help you stay informed and confident.

đŸ“© Have questions for your team?

Bring these up at your next appointment:

  • Can I reduce my medication safely?

  • Could I benefit from a biologic?

  • How often should I check my IgE?

  • How can I reduce exposure at home?

by GAtherton

Can You Have ABPA with a Normal CT Scan? Yes — Here’s Why

If you’ve been diagnosed with ABPA (Allergic Bronchopulmonary Aspergillosis) but your HRCT (High-Resolution CT) scan looks normal, you may feel confused — or even wonder if the diagnosis is correct. After all, ABPA is often associated with visible lung damage on scans, right?

The answer is: yes, you can have ABPA with a normal scan — and it’s more common than many people realise.

Let’s break it down.

🧠 What Is ABPA?

ABPA is a condition in which the immune system overreacts to a common environmental fungus, Aspergillus fumigatus. This overreaction leads to:

  • Inflammation in the lungs

  • Wheezing and breathlessness

  • Cough with mucus

  • And, in some cases, damage to the airways over time

It often occurs in people who already have asthma or cystic fibrosis.

đŸ§Ș How Is ABPA Diagnosed?

ABPA is not diagnosed by just one test. It’s based on a combination of findings, including:

  • High total IgE (an allergy antibody)

  • Specific IgE to Aspergillus fumigatus (proves sensitivity to the fungus)

  • Blood eosinophilia (a type of allergy-related white blood cell)

  • Clinical symptoms (like wheezing, cough, or mucus plugging)

  • Chest imaging — typically an HRCT scan

But here’s the key point: you don’t need visible lung damage on a scan to be diagnosed with ABPA.

📊 What If Your CT Scan Looks Normal?

This is actually quite common, especially in the early stages of ABPA.

  • No visible lung damage may simply mean the condition has been caught early — before structural changes (like bronchiectasis or mucus plugging) have developed.

  • Some people may go through milder or intermittent flares without developing long-term damage.

  • In certain cases, lung damage may be subtle or not easily seen on the scan, especially if inflammation is mild or temporary.

🆕 What Do the Latest Guidelines Say?

The 2024 update to the ISHAM diagnostic criteria for ABPA (by the International Society for Human and Animal Mycology) recognises that some patients may have ABPA even if their CT scan appears normal.

This form is sometimes called:

  • ABPA-S, where “S” stands for serologic (diagnosis is based on blood tests)

  • It means the allergic reaction is present in the body, even if lung damage hasn’t occurred yet

This updated understanding helps doctors diagnose ABPA earlier, so treatment can begin before lasting damage happens.

💬 What Should You Do If You’re in This Situation?

If you've been diagnosed with ABPA but your scan is normal:

  • Don’t dismiss the diagnosis — it could be accurate and important.

  • Ask your doctor whether your diagnosis fits the 2024 ISHAM criteria.

  • Track your symptoms, IgE levels, and any breathing changes over time.

  • Talk to your healthcare provider about treatment options, which may include:

    • Steroids to reduce inflammation

    • Antifungal medications to reduce fungal exposure in the lungs

    • Biologic treatments if other options aren’t suitable

✅ Key Points to Remember

  • Yes, ABPA can occur with a normal CT scan.

  • Diagnosis is based on immune response and symptoms, not just imaging.

  • Early detection — before damage shows up on scans — is a good thing.

  • Updated guidelines now recognise this form of ABPA as valid and treatable.

If you’re feeling uncertain about your diagnosis, don’t hesitate to ask your doctor for a clear explanation — or consider a second opinion from a respiratory specialist with experience in fungal allergy and ABPA.

The earlier ABPA is identified and treated, the better the chances of keeping your lungs healthy and symptoms under control.

by GAtherton