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

🧪 Antibiotics, Fungal Risk, and ABPA: What Patients Need to Know

If you live with Allergic Bronchopulmonary Aspergillosis (ABPA) or another form of aspergillosis, you may be prescribed a range of treatments — including steroids, biologics, and sometimes antibiotics to prevent infections.

But how do these medications interact with each other? Could antibiotics make fungal conditions worse? And when should you use them?

This guide explains how different specialists, especially Infectious Diseases (ID) consultants, approach these questions, and what patients should know when balancing treatments for infections, inflammation, and immunity.

💊 What Are Prophylactic Antibiotics and Why Are They Used?

“Prophylactic” antibiotics are low-dose medications taken regularly to prevent infections, rather than to treat a current one. You may be prescribed them if you:

  • Have frequent chest infections due to asthma, bronchiectasis, or ABPA

  • Are prone to urinary tract infections (UTIs), especially in winter

  • Use long-term steroids, which can reduce your ability to fight bacterial infections

Examples include TRISOL (trimethoprim), azithromycin, or doxycycline.

🦠 Can Antibiotics Make Fungal Problems Worse?

Yes — especially with long-term use. Here's why:

  • Antibiotics disrupt the natural balance of bacteria in the body

  • This allows fungi like Aspergillus (or sometimes Candida) to multiply more easily

  • The risk is higher in people taking steroids, biologics, or who already have fungal colonisation or sensitisation

So while antibiotics may prevent bacterial infections, they can increase the risk of fungal flare-ups — especially in the lungs.

🧠 What Do Infectious Diseases (ID) Specialists Consider?

If you're being seen by an ID team (such as at a specialist aspergillosis clinic), they will carefully assess the balance between preventing bacterial infections and not encouraging fungal overgrowth.

ID specialists tend to:

  • Avoid long-term antibiotics unless absolutely necessary

  • Pause antibiotics to allow accurate cultures to be taken

  • Work with Respiratory and Urology teams to manage infections and inflammation together

  • Consider non-antibiotic options for UTI prevention, such as:

    • Good hydration

    • Methenamine hippurate (Hiprex)

    • Vaginal oestrogen (in post-menopausal women)

🧯 What About Steroids and Biologics?

  • Steroids (like prednisolone) are important in controlling allergic inflammation in ABPA

    • But they also suppress the immune system

    • And raise blood sugar, which can fuel fungal growth

  • Biologics (like omalizumab or dupilumab) are more targeted

    • They may allow you to use fewer steroids

    • But they still modulate the immune system, so infection risk must be monitored

When using steroids or biologics, ID teams may recommend:

  • Close monitoring of fungal markers (e.g. IgE, Aspergillus PCR, sputum culture)

  • Antifungal therapy alongside other treatments if needed

  • Avoiding unnecessary antibiotics to keep fungal balance under control

✅ When Might It Be Safe to Stop Prophylactic Antibiotics?

If you're on long-term antibiotics for UTIs or chest infections, and your infection rate has dropped, it may be safe to pause prophylaxis. This is more likely if:

  • Recent infections have been mild or infrequent

  • Your Urology or Respiratory team agrees

  • Cultures are negative, and symptoms are stable

  • You have access to fast, “test and treat” options if a new infection occurs

In some cases, your doctor may stop antibiotics so blood and urine cultures can be taken without interference — to ensure any future treatment is accurate and appropriate.

🧾 Key Takeaways

Situation What to Consider
You’ve been on TRISOL or another antibiotic Reassess whether infections are still frequent/severe enough to justify it
You’re starting steroids or biologics Watch for fungal flare-ups — you may need antifungal support
You’ve been told to stop antibiotics temporarily This may be to allow clear diagnosis (cultures, IgE, sputum tests)
You’re not sure what to do next Ask for your care to be coordinated between ID, Urology, and Respiratory teams

🩺 A Word on Coordination

If multiple specialists are involved in your care (e.g. GP, Urology, Infectious Diseases, Respiratory), it's important they communicate clearly. You may want to ask:

  • “Can you confirm this plan with my other specialists?”

  • “Do I need a fungal check-up before restarting antibiotics?”

  • “Could we use a non-antibiotic prevention strategy instead?”

This will help avoid overlapping risks, conflicting advice, or missed infections.

🗣️ Final Thought

In ABPA and other fungal conditions, it's not a matter of choosing between bacteria or fungi — it's about managing both carefully.

Antibiotics, steroids, and biologics all have a role — but they need to be used in balance, with infection risk, fungal exposure, and immune suppression monitored as a whole.

by GAtherton

🫁 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.

🔹 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

🧪 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

🗣️ 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

🌦️ Staying Safe with Aspergillosis During UK Weather and Health Alerts

People living with aspergillosis—including ABPA, CPA, Aspergillus bronchitis, or those on long-term steroids or antifungals—are especially vulnerable during periods of extreme weather. Understanding official UK weather and health alerts can help you take timely action to protect your lungs and overall health.

🔔 What Are Weather and Health Alerts?

In the UK, two major bodies issue public alerts:

1. Met Office Weather Warnings

  • Focus on immediate weather dangers: storms, heavy rain, wind, snow, ice, and fog

  • Issued in yellow, amber, or red based on severity and risk to life

2. UK Health Security Agency (UKHSA) Health Alerts

  • Focus on health risks from temperature extremes: heatwaves or cold spells

  • Jointly issued with the Met Office as part of the Weather-Health Alerting System

🟨🟧🟥 What the Colours Mean

Level What it means What you should do
Yellow Be aware: possible disruption Stay informed and prepare
Amber Be prepared: likely disruption Take action to protect health
Red Take action: major risk Follow emergency advice

☀️ Heat Alerts and Aspergillosis

Issued from June to September, these alerts warn of high temperatures that may affect health.

🔹 Why Heat Matters:

  • Hot, humid air can worsen breathing in people with lung conditions

  • Ozone and air pollution often rise during heatwaves, irritating airways

  • Aspergillus spores thrive in warm, damp environments, increasing exposure

  • People on antifungals (like voriconazole) may be photosensitive and prone to heat rashes

  • Steroid users may not regulate temperature well, increasing heat stress risk

🔹 What to Do:

  • Stay indoors during the hottest part of the day (11am–3pm)

  • Use fans, cool showers, and keep curtains closed in sunny rooms

  • Drink plenty of fluids (check with your doctor if you have fluid restrictions)

  • Avoid gardening, composting, or opening windows during dry, windy conditions

  • Protect your skin if taking sun-sensitive medications

❄️ Cold Alerts and Aspergillosis

Issued between November and March, these alerts warn of dangerously low temperatures.

🔹 Why Cold Matters:

  • Cold air can tighten airways, leading to coughing or wheezing

  • Cold increases the risk of chest infections in people with CPA or ABPA

  • Damp and mould thrive in unheated homes, raising fungal exposure

  • Cold-related stress can worsen cardiovascular strain and fatigue

🔹 What to Do:

  • Keep indoor temperature at 18°C or above, especially in the bedroom

  • Use dehumidifiers to reduce mould growth

  • Check for leaks or condensation, and ventilate bathrooms and kitchens

  • Wrap up warmly when going outside—wear a scarf over your nose and mouth to warm the air you breathe

  • If you use oxygen or nebulisers, make sure devices are protected from cold damage

🌪️ Storms, Floods & Other Weather Events

The Met Office issues warnings for:

  • Storms (wind, lightning)

  • Heavy rain and flooding

  • Fog

  • Snow and ice

🔹 Risks for Aspergillosis Patients:

  • Flooding or roof damage can promote indoor mould

  • Disrupted power may affect your oxygen concentrator, fridge-stored medication, or nebuliser use

  • Poor air quality may irritate airways

  • Increased fungal exposure after water damage or building repairs

🔹 What to Do:

  • Make a personal emergency plan (backup power for medical equipment, emergency contact list)

  • If your home is damp or recently flooded, ask your local council or housing provider for a mould survey

  • Stay inside during high wind or dust storms

  • Use an FFP2/FFP3 mask if entering dusty or damaged environments

🧭 Who Should Be Extra Cautious?

These alerts are especially important for:

  • People with CPA, ABPA, or bronchiectasis

  • Those on steroids, biologics, or antifungal therapy

  • People with adrenal insufficiency or immune suppression

  • The elderly, babies, or people with mobility or cognitive difficulties

  • People with a history of hospital admissions due to chest infections or exacerbations

📲 How to Get Alerts

You can receive real-time alerts from:

✅ Summary: Practical Steps

Alert Type Action for Aspergillosis Patients
Heat alert Stay indoors, cool the home, hydrate, reduce spore exposure
Cold alert Heat rooms, reduce damp/mould, stay warm, use respiratory meds as needed
Storm/flood Avoid mould-prone areas, prepare backup power/medication access
Air quality Avoid outdoor exposure, use masks and HEPA filters

📘 Extra Help & Resources

  • Ask your GP or hospital team if you can be added to a vulnerability list

  • If you’re in social housing, housing officers must act if the home becomes unsafe due to damp or cold

  • For support with mould, damp, or heating costs, contact:

    • Citizens Advice

    • Your local council

    • Your respiratory nurse or hospital’s community support team

by GAtherton

Understanding the Side Effects of Long-Term Prednisolone Use

Prednisolone is a widely used and effective medication for managing inflammation in aspergillosis. However, when taken for more than 3–4 weeks—especially at moderate or high doses—it can cause unwanted effects in different parts of the body. Knowing what to expect and how to reduce risks can help you feel more in control of your treatment.

Prednisolone is a synthetic form of cortisol, a hormone your body normally produces to manage stress and inflammation. When you take it in larger-than-natural amounts over time, it can interfere with how your body handles fluids, sugar, bone rebuilding, immune function, and even mood and sleep.

Below are the most common side effects and why they happen:

Common Side Effects and Why They Happen

Prednisolone mimics cortisol, a hormone naturally made by your body. But when taken in higher-than-natural amounts over a long time, it can disrupt many systems. Here's why these side effects happen:

  • Weight gain and fluid retention – Steroids affect how your body processes salt and water, leading to bloating and weight changes.
  • Moon face – Fat redistributes to the face, neck, and abdomen.
  • Thinning skin and bruising – Steroids reduce collagen production, making skin fragile.
  • High blood pressure – Caused by fluid retention and effects on blood vessel tone.
  • Increased risk of infections – Steroids suppress your immune system, making it harder to fight infections.
  • Osteoporosis – Steroids interfere with calcium absorption and bone rebuilding.
  • Muscle weakness – Corticosteroids break down protein, reducing muscle strength, especially in the thighs and upper arms.
  • Mood and sleep changes – Steroids can affect the brain’s chemistry, causing anxiety, insomnia, or mood swings.
  • Eye problems – Long-term use can raise pressure in the eyes or cloud the lens (cataracts).
  • High blood sugar or diabetes – Steroids make it harder for your body to use insulin effectively. **

What You Can Do to Minimise Side Effects

Managing steroid side effects involves a combination of lifestyle choices and medical support:

Strategy Why It Helps
Use the lowest effective dose Reduces cumulative exposure to steroid side effects
Switch to hydrocortisone when appropriate Mimics natural cortisol and is better tolerated long term
Monitor blood pressure, bone health, and blood sugar Early detection helps prevent complications
Take calcium, vitamin D, and possibly bone-strengthening medications Supports healthy bones
Exercise regularly Maintains strength, mobility, and mood
Eat a balanced diet low in salt and sugar Helps manage weight, BP, and blood sugar
Keep up with regular medical reviews Ensures your treatment is safe and effective

Trusted Resources and Support

You're not alone in managing steroid side effects. These resources offer guidance and community support:

Taking charge of your health with the support of your care team can greatly reduce the risks of long-term steroid use.

How to Lessen the Impact of Side Effects

Many of the risks of long-term prednisolone use can be reduced by making small lifestyle changes and working closely with your medical team. These steps can help protect your bones, heart, immune system, and overall wellbeing: You may also find support through:

  • Downloadable Steroid Emergency Cards (UK): https://www.endocrinology.org/adrenal-crisis
  • National Aspergillosis Centre patient resources: https://aspergillosis.org
  • Patient support groups such as the Aspergillosis Trust or National Aspergillosis Centre's patient forum
  • Your pharmacist, who can help with medication side effects and monitoring
  • Specialist endocrine nurses if adrenal insufficiency is diagnosed

Final Thoughts

Long-term steroid use helps many aspergillosis patients control inflammation and stay well. But it comes with responsibilities — particularly the need to monitor for adrenal suppression.

Understanding the HPA axis, recognising symptoms of AI, and knowing when and how to stress dose can empower you to live safely and confidently with aspergillosis.

Always talk to your specialist team if you’re unsure about fatigue, tapering, or illness management. You are not alone — and support is available.

by GAtherton

Understanding the HPA Axis and Long-Term Steroid Use in Aspergillosis

For patients living with ABPA, CPA, or other forms of aspergillosis who have used steroids long term

What is the HPA Axis?

The HPA axis stands for the Hypothalamic–Pituitary–Adrenal axis. It's a vital communication system between three parts of your body:

  • The Hypothalamus (in the brain)
  • The Pituitary gland (also in the brain)
  • The Adrenal glands (on top of your kidneys)

These three work together to manage your body’s response to stress, regulate inflammation, and control levels of a hormone called cortisol.

Cortisol helps you respond to illness, injury, or stress. It also affects energy levels, blood pressure, immune function, and even mood.

How Does the HPA Axis Work?

Here’s a simplified version:

  1. The hypothalamus senses stress or inflammation and sends a hormone called CRH to the pituitary.
  2. The pituitary gland then sends ACTH to the adrenal glands.
  3. The adrenal glands release cortisol, which acts throughout your body to reduce inflammation and keep your systems balanced.

Once enough cortisol is in the blood, it signals the brain to stop releasing more. This keeps the system in balance.

Why Aspergillosis Patients Need to Understand This

Many people with aspergillosis—especially those with ABPA (Allergic Bronchopulmonary Aspergillosis)—are treated with oral corticosteroids such as prednisolone. These steroids reduce inflammation but can also interfere with the HPA axis.

Over time, the body may stop producing natural cortisol because it detects enough from medication. This condition is called adrenal insufficiency (AI) or HPA axis suppression.

Symptoms of Adrenal Insufficiency (AI)

If your adrenal glands are underactive, especially after long-term steroid use, you may experience:

  • Extreme fatigue or feeling drained
  • Muscle weakness
  • Joint pain
  • Feeling dizzy or faint, especially when standing
  • Low blood pressure
  • Nausea, vomiting, or abdominal pain
  • Loss of appetite
  • Worsening of general health during mild illnesses

In severe cases, a lack of cortisol can lead to an adrenal crisis, which is a medical emergency.

What to Do if You Suspect Adrenal Insufficiency

  • Never stop steroids suddenly. Your dose should always be tapered under medical supervision.
  • If you’ve been on steroids for several weeks or more, ask your doctor whether you should be tested for adrenal insufficiency using a short Synacthen test, which checks how well your adrenal glands respond to a synthetic version of ACTH (not cortisol itself). Synacthen is not your natural corticosteroid, but it helps doctors assess whether your adrenal glands are producing enough natural cortisol..
  • You may be switched from prednisolone to hydrocortisone, which is a more natural replacement for cortisol and easier to adjust during illness.

When to Stress Dose (and Why It Matters)

Your stress dosing plan must always be agreed with your doctor. It should be tailored to your specific needs and medical history. If your body is under stress (e.g., illness, surgery, trauma), it needs more cortisol. If your adrenal glands aren’t working properly, this extra cortisol must come from medication.

Common stress dosing scenarios include:

  • Fever over 38°C
  • Vomiting or diarrhoea
  • Dental surgery or minor operations
  • Respiratory infections or flare-ups
  • Emotional trauma or physical injury

Typical stress dosing guidance:

  • Double your usual dose for 2–3 days during mild illness
  • Seek emergency care immediately if you can’t keep down tablets or feel seriously unwell. In some cases, emergency medical staff may need to inject hydrocortisone (100 mg intramuscularly) to stabilise you. This should only be done by trained professionals unless you have been specifically trained and advised to self-administer by your specialist.

Always carry:

  • A Steroid Emergency Card
  • A medical alert bracelet
  • An emergency hydrocortisone injection kit if advised

Why Doctors May Switch You to Hydrocortisone

Even though prednisolone can be used to replace cortisol, some patients still experience symptoms of adrenal insufficiency while on it. This can happen because:

  • The dose might be too low for your needs
  • Prednisolone doesn’t follow the body’s natural cortisol rhythm, which peaks in the early morning and drops throughout the day
  • During illness or stress, the body needs more cortisol, and prednisolone doesn’t automatically increase
  • Individuals metabolise steroids differently, so a standard dose may not be right for everyone

Common symptoms despite taking prednisolone may include:

  • Ongoing fatigue, especially in the morning or late afternoon
  • Poor stress tolerance
  • Dizziness or weakness during illness
  • Slow recovery after infections

For these reasons, your doctor may switch you to hydrocortisone, which is:

  • Shorter-acting and better mimics natural cortisol rhythms
  • Easier to adjust during illness or stress
  • Often better tolerated long term with fewer side effects Hydrocortisone is shorter-acting and more closely mimics the natural rhythm of cortisol. It is usually taken in two or three doses throughout the day — for example, a larger dose in the morning, a smaller dose at lunchtime, and sometimes a final small dose in the early afternoon. This schedule helps replicate the natural daily rise and fall of cortisol and may improve energy levels, mood, and overall well-being.. It may be preferred if:
  • You’re tapering from long-term prednisolone
  • You’ve developed confirmed adrenal insufficiency
  • You need a safer long-term maintenance dose
  • You experience steroid-related side effects

Key Reminders for Aspergillosis Patients

Do This Why It Matters
Follow your tapering plan Prevents adrenal crisis
Ask about adrenal testing if fatigued Catches suppressed adrenal function early
Know your sick-day rules Allows for stress dosing during illness
Consider switching to hydrocortisone Safer, more natural for long-term hormone replacement
Carry emergency ID and hydrocortisone Life-saving in a crisis

Final Thoughts

Long-term steroid use helps many aspergillosis patients control inflammation and stay well. But it comes with responsibilities — particularly the need to monitor for adrenal suppression.

Understanding the HPA axis, recognising symptoms of AI, and knowing when and how to stress dose can empower you to live safely and confidently with aspergillosis.

Always talk to your specialist team if you’re unsure about fatigue, tapering, or illness management. You are not alone — and support is available.

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

🧪 Are Multiple CT Scans Safe? A Guide for Aspergillosis Patients

If you’re living with aspergillosis — whether ABPA, CPA, SAFS, or another form — your doctors may recommend CT scans (or other types of imaging) to monitor your lungs over time. You might be wondering:

“Is it safe to have several CT scans? What about the radiation?”

This article explains when scans are needed, how much radiation they involve, and why they are considered safe — especially when used for chronic lung conditions like aspergillosis.

📷 Why CT Scans Are Used in Aspergillosis

CT scans (especially HRCT or high-resolution CT) are important tools for:

  • Diagnosing or confirming fungal infection

  • Detecting lung cavities, inflammation, or mucus plugging

  • Monitoring disease progression or improvement

  • Checking for complications (e.g. bleeding, infection, fibrosis)

  • Deciding on or adjusting treatment (e.g. antifungals or biologics)

For people with CPA, ABPA, or other long-term lung problems, CT scans provide much more detail than standard chest X-rays.

☢️ How Much Radiation Does a CT Scan Use?

Scan Type Typical Radiation Dose Equivalent Exposure
Chest X-ray 0.1 mSv ~10 days of natural background radiation
HRCT Chest 3–7 mSv ~1–2 years of background radiation
Low-Dose CT (LDCT) 1–2 mSv Often used for regular lung monitoring

✈️ For comparison, a return flight from the UK to New York gives you about 0.1 mSv — the same as one chest X-ray.

✅ Are Multiple Scans Safe?

Yes — when medically necessary, repeated CT scans are considered safe, even over the course of many years. Doctors weigh the small potential risk of radiation against the very real risk of missing important changes in your lungs.

Key points:

  • There is no strict lifetime limit on CT scans

  • Low-dose CT is often used to reduce exposure

  • Your medical team will track your history and avoid unnecessary scans

  • The benefit of accurate diagnosis and monitoring far outweighs the theoretical risk

📈 When Are Repeat CT Scans Recommended in Aspergillosis?

Situation Why Scanning Helps
CPA monitoring Track cavities, check for fungal growth or bleeding
ABPA flare-up Look for mucus impaction or bronchiectasis changes
New or unexplained symptoms Rule out co-infections, pneumonia, or embolism
Post-treatment review See if antifungals or biologics are working
Surgery planning or lung transplant screening Required for safety and precision

🤔 Can You Ask for Fewer Scans?

You can always talk to your healthcare team and ask:

  • "Can this be done with a low-dose CT?"

  • "Is there a recent scan that covers this already?"

  • "How will this scan change my care?"

However, don't delay or refuse a scan out of fear. CT scans are one of the best tools to catch problems early, which can avoid complications, hospital stays, or irreversible lung damage.

🧠 Summary: What You Need to Know

Yes, CT scans use radiation — but in controlled amounts, and only when needed. The information they provide is often vital for treating aspergillosis safely and effectively.

✅ Safe — especially when medically justified

✅ Used with care by your clinical team

✅ Often available in low-dose versions for repeat use

If you have concerns, always feel free to ask your doctor. It’s okay to be curious — and it's even better to be informed.

by GAtherton

🌿 Complementary Therapies and Aspergillosis: What Helps, What Doesn’t

Living with aspergillosis — whether it's ABPA, CPA, SAFS, or another form — can be physically and emotionally challenging. While medical treatments like antifungals, steroids, or biologics remain essential, many people ask:

“Can alternative or complementary therapies help with my symptoms or recovery?”

The short answer is: some can support your wellbeing, but they must be used safely and alongside your prescribed care. This guide helps you understand what’s worth exploring — and what to avoid.

🟢🟡🔴 Traffic Light Guide to Complementary Therapies

This guide helps you navigate the wide range of alternative treatments — showing what’s generally safe, what to approach with caution, and what may cause harm.

🟢 GREEN – Generally Safe & Often Helpful

Therapy Benefit Notes
Airway clearance (ACTs, postural drainage) Clears mucus, reduces infection risk Best when guided by physiotherapy
Mindfulness / breathing exercises Helps anxiety, reduces flare-ups Supports emotional balance
Vitamin D (with testing) May improve immune regulation Deficiency is common in chronic conditions
Yoga / tai chi / gentle stretching Improves lung mobility, energy Avoid overexertion during flares
CBT / talking therapy Helps manage fear, fatigue, trauma Often underused but effective
Steam inhalation (plain or saline) Loosens mucus Avoid if you’re chemically sensitive
Probiotics (capsules or pasteurised products) Rebuilds gut after antibiotics Avoid live cultures if immunocompromised

🟡 AMBER – Use with Caution

These may offer some support, but need discussion with your doctor or asthma nurse.

Therapy Claimed Use Caution
Curcumin (turmeric extract) Anti-inflammatory May interact with meds; avoid high doses
Ginger, green tea Mild antioxidant effect Some people are sensitive or intolerant
Salt therapy (halotherapy) Loosens mucus May irritate lungs if dry or unregulated
Essential oils (external use only) Relaxation May trigger asthma or MCS
Acupuncture Pain or immune balance Choose practitioners familiar with lung disease
Herbal teas (e.g. liquorice, chamomile) Stress relief Liquorice can raise BP and potassium levels

🔴 RED – Avoid These

These therapies are unproven, unsafe, or known to cause harm — especially in people with respiratory or immune-related illness.

Therapy Risk
Homeopathy No evidence of effectiveness; delays real treatment
Unregulated antifungal herbs (e.g. oregano oil, pau d’arco) Potential liver damage, interactions
Colloidal silver Can damage organs, build up in body
Ingesting essential oils Toxic to lungs and digestive system
Raw unpasteurised probiotics Unsafe for immunocompromised patients
Detox diets / extreme fasting Can lead to weakness, adrenal crash (especially if on steroids)

💬 What About "Immune Boosting"?

Be careful with products or diets claiming to "boost" your immune system. In ABPA and SAFS, the immune system is already overreacting. Instead, the goal is to calm or rebalance inflammation — often through medications like biologics, not immune stimulants.

📌 Tips for Safe Use of Complementary Therapies

  • Always tell your doctor about anything new you’re trying

  • Check for interactions with antifungals, steroids, or blood pressure medication

  • Watch for chemically sensitive reactions (some ABPA patients are triggered by fragrances, sprays, or supplements)

  • Focus on whole-body support: rest, nutrition, lung clearance, and emotional wellbeing

🧠 Key Takeaway

Complementary therapies can help you feel better, breathe easier, and cope with the mental toll of chronic illness — but they are not a substitute for medical treatment.

Choose therapies that are:

  • Evidence-informed

  • Used alongside your prescribed care

  • Safe for your specific condition

by GAtherton

🫁 Do Lung Cavities Ever Heal? A Guide for People with Aspergillosis

If you’ve been diagnosed with aspergillosis and have lung cavities (also called cavitary lesions), you may be wondering:

Will these cavities go away? Can lungs heal from this?

The answer isn’t simple — but with the right care and monitoring, you and your medical team can understand what’s likely in your case.

🧬 What Causes Lung Cavities in Aspergillosis?

Lung cavities are hollow spaces in lung tissue. In people with aspergillosis, they can develop for different reasons:

  • In Chronic Pulmonary Aspergillosis (CPA), cavities are often long-standing and may contain a fungal ball (aspergilloma)

  • In Allergic Bronchopulmonary Aspergillosis (ABPA), they may follow an episode of severe infection like pneumonia or result from long-term inflammation and airway damage

  • In invasive aspergillosis, especially in people with weak immune systems, rapid tissue damage can lead to new cavities

Sometimes, cavities form in people who already have underlying conditions like:

  • Tuberculosis

  • Sarcoidosis

  • COPD

  • Bronchiectasis

✅ When Lung Cavities Might Heal

Some lung cavities can heal or shrink over time — especially if:

  • The original infection (e.g. pneumonia or invasive aspergillosis) has fully cleared

  • There is no ongoing fungal infection

  • The cavity is thin-walled and small

  • Your body is able to mount a good healing response

In these cases, the lung may scar over, and the cavity can slowly close or shrink over several months.

🟡 When Cavities Are Less Likely to Heal

Cavities may persist or even worsen if:

  • There is ongoing infection with Aspergillus fumigatus or another fungus

  • You have CPA, where cavities are part of the disease

  • The cavity contains an aspergilloma (fungal ball)

  • You have long-term inflammation or damage from previous diseases like TB or ABPA

  • You're on long-term steroids or immunosuppressants, which affect healing

In these situations, cavities often remain and may need long-term monitoring or treatment.

🔍 How Are Cavities Monitored in Aspergillosis?

Your team will usually monitor lung cavities with:

Test Purpose
Chest CT scans To see if the cavity is stable, shrinking, or changing shape
Blood tests (Aspergillus IgG, CRP, etc.) To check for signs of infection or inflammation
Sputum or BAL cultures To detect fungal growth in the lungs
Regular symptom checks To track signs like cough, chest pain, fatigue, or coughing blood

💡 How Can You Support Healing?

Although not all cavities heal completely, you can take steps to support your lung health:

Action Why It Matters
Treat infection early Reduces the chance of further lung damage
Follow antifungal treatment if prescribed Controls fungal colonisation and CPA
Keep inflammation down Essential in ABPA or CPA to limit tissue injury
Minimise steroid use when safe Steroids can delay healing and increase risk of fungal growth
Quit smoking & avoid pollutants Gives your lungs the best chance to recover
Attend follow-ups CT scans and blood tests help catch changes early

⚠️ When to Get Urgent Help

Contact your medical team if you notice:

  • Sudden worsening of cough or shortness of breath

  • Blood in your sputum (even small amounts)

  • Fever or weight loss

  • Chest pain or fatigue that’s getting worse

These could be signs of complications like bleeding or progression of CPA.

🧠 Summary

Lung cavities caused by aspergillosis can sometimes heal — especially if they’re small, caused by a short-term infection, and not colonised by fungus. But many people with chronic forms like CPA will have cavities that remain and need careful management.

Staying informed, sticking to your treatment plan, and attending regular check-ups give you the best chance of protecting your lung health.

by GAtherton