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?

🗣️ 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.

🤝 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

🌿 Practical Steps for Managing Steroid-Related Facial Swelling

🧊 1. Cold Compresses

  • Applying a cool, damp cloth or cold gel mask to your face and neck for 10–15 minutes may help reduce inflammation and redness, especially in the evening.

  • Avoid ice directly on the skin.

🛌 2. Elevation and Sleep Position

  • Try sleeping with your head elevated on an extra pillow. This helps reduce overnight fluid pooling in the face.

  • During the day, keep your head upright when sitting or resting.

💧 3. Fluid Management

  • Paradoxically, drinking plenty of water helps your body excrete excess salt and reduce fluid retention.

  • Consider reducing your sodium intake, as salt encourages water retention and worsens facial puffiness.

🍽️ 4. Diet Adjustments

  • Avoid high-carb and sugary foods, which can worsen fluid retention and blood sugar instability (already affected by steroids).

  • Add potassium-rich foods (e.g. bananas, spinach, sweet potatoes), which help balance fluid levels.

🚶 5. Gentle Movement

  • Short walks or mild activity during the day help circulation and prevent dependent edema (swelling that increases as the day goes on).

🧴 6. Skin Soothing and Anti-Inflammatory Topicals

  • Use fragrance-free soothing moisturisers containing niacinamide or aloe vera.

  • Redness may also respond to mild over-the-counter hydrocortisone cream for short use — though caution is advised since you're already on systemic steroids.

💊 7. Medication Review

  • Diuretics (water tablets) are rarely used for steroid-induced swelling, but in some cases, a clinician may consider it if fluid retention is severe.

  • Tapering your corticosteroids (if appropriate and under supervision) can gradually improve symptoms — discuss this with your prescriber.

🩺 8. Consult a Specialist

  • If the swelling is asymmetric, very painful, or associated with new symptoms (e.g., visual changes, difficulty swallowing, skin tightness), you should be checked promptly for other causes.

  • A referral to a dermatologist or endocrinologist may help if cosmetic or systemic effects are severe or long-term.

⚠️ When to Seek Urgent Medical Advice

Call your GP or attend an urgent care clinic if you have:

  • Sudden, painful swelling

  • Shortness of breath

  • Swelling spreading rapidly

  • New rash, fever, or visual disturbance

by GAtherton

Patient Guide: Understanding Aspergillus-Related Chronic Pulmonary Disease

Based on new international guidance (2024)

What is Aspergillus and Why Is It Important?

Aspergillus is a common type of fungus found in the environment. Most people breathe it in every day without any problem. However, if you have a lung condition or a weakened immune system, Aspergillus can cause serious problems. It can:

  • Trigger allergic reactions in the lungs
  • Infect damaged lung tissue
  • Worsen symptoms like coughing, wheezing, or breathlessness

Until recently, doctors treated each type of aspergillus-related lung disease as a separate condition. But new guidance recognises that many patients may have more than one form or sit on a spectrum.

What Conditions Are Included?

The term "aspergillus-related chronic pulmonary disease" covers a range of conditions:

Condition What it means
ABPA (Allergic Bronchopulmonary Aspergillosis) An allergic reaction to Aspergillus, usually in asthma or cystic fibrosis patients
CPA (Chronic Pulmonary Aspergillosis) A slow-developing fungal infection, often in people with pre-existing lung damage
Aspergillus bronchitis A fungal infection in the airways, often in people with bronchiectasis
Overlap syndromes Some people show features of more than one of the above

What Are the Symptoms?

Symptoms can vary, but common signs include:

  • Persistent cough (sometimes with mucus or blood)
  • Wheezing or breathlessness
  • Fatigue and low energy
  • Weight loss or loss of appetite
  • Repeated chest infections

If you experience these symptoms and have an underlying lung condition, it’s important to ask whether Aspergillus might be involved.

How Is It Diagnosed?

Doctors now use a combination of tests to get a clearer picture:

  • Chest CT scan – to look for signs of lung damage or fungal balls
  • Sputum samples – to check for the presence of Aspergillus
  • Blood tests – to detect allergic antibodies (IgE), immune responses (IgG), or fungal antigens
  • Bronchoscopy (sometimes) – to collect samples directly from the lungs

These tests help doctors decide whether it’s an allergic reaction, an infection, or both.

How Is It Treated?

Treatment depends on your symptoms and test results. The aim is to:

  • Reduce inflammation
  • Clear fungal infection
  • Prevent further lung damage

Common treatment options include:

Treatment Purpose
Steroids (e.g. prednisolone) Reduce allergic inflammation (especially in ABPA)
Antifungal drugs (e.g. itraconazole, voriconazole) Treat fungal infection and reduce fungal burden
Biologic therapies (e.g. omalizumab, dupilumab) Used in difficult-to-treat allergic cases
Nebulised antibiotics If other infections (like Pseudomonas) are also present
Surgery (rarely) To remove fungal balls or damaged tissue in severe CPA

What Has Changed in the 2024 Guidance?

  • Doctors are now encouraged to look for overlapping features, not just one diagnosis.
  • More emphasis is placed on early detection and preventing lung decline.
  • Guidelines promote the use of multidisciplinary teams (MDTs) for complex cases.
  • Newer treatments, including biologics, are being recommended more often.
  • Patients with symptoms but unclear diagnoses should be re-evaluated regularly.

What Can You Do as a Patient?

  • Know your diagnosis – Ask your team whether your current label still fits your symptoms
  • Track your symptoms – Keep a log of cough, breathlessness, fatigue, and infections
  • Ask about specialist referral – For example, to a National Aspergillosis Centre
  • Stay informed – Visit aspergillosis.org for up-to-date guidance
  • Take medications as prescribed and report any side effects promptly

Support and Information

  • Patient support groups can help you connect with others
  • Pulmonary rehabilitation and breathing therapy can improve quality of life
  • Annual reviews and regular scans can help spot problems early

For more information, leaflets, and help getting the right care, visit: aspergillosis.org

You don’t have to manage this alone.

by GAtherton

🗣️ Managing Cough in Aspergillosis: A Patient Guide

Cough is one of the most common and exhausting symptoms of aspergillosis. Whether you have ABPA, CPA, Aspergillus bronchitis, or co-existing bronchiectasis, coughing can:

  • Disrupt sleep

  • Cause fatigue, pain, or incontinence

  • Trigger bleeding (haemoptysis)

  • Affect emotional wellbeing

The good news: many strategies can help reduce cough, loosen mucus, and protect your lungs.

🧪 First: Understand Why You're Coughing

Underlying cause Why it triggers cough
Inflammation (e.g. ABPA) Airways swell and become hyperreactive
Mucus overproduction Thick secretions irritate airway linings
Fungal burden or infection Triggers immune response and inflammation
Bronchiectasis Traps mucus and fosters infection
Dry air, scents, reflux External triggers aggravate coughing reflex

🧹 1. Clear Your Airways Safely and Effectively

Clearing mucus gently can reduce irritation and risk of infection.

✅ Best techniques:

  • Postural drainage (lying in positions to let mucus drain out)

  • Active cycle of breathing technique (ACBT):

    1. Relaxed breathing

    2. Deep breaths in

    3. Gentle "huff" to move mucus up

  • Autogenic drainage (controlled breathing at different depths)

⚠️ Caution after haemoptysis:

Pause airway clearance or get medical advice first.

💧 2. Keep Mucus Thin

Thick mucus worsens cough and is harder to clear.

  • Stay hydrated – aim for 6–8 glasses of water a day

  • Nebulised saline (0.9% or 3% hypertonic) – prescribed for some patients to thin secretions

  • Humidifiers (cool mist) – especially in dry indoor environments

  • Warm showers/steam – unless they trigger coughing

💊 3. Medications to Control Cough (Prescription only)

Type Purpose Notes
Steroids (oral or inhaled) Reduces inflammation in ABPA Short-term or long-term
Antifungals (e.g. itraconazole) Reduce fungal burden in CPA, ABPA May take weeks to improve cough
Bronchodilators (e.g. salbutamol) Open airways and relieve tightness Can help with productive coughing
Macrolide antibiotics (e.g. azithromycin) Anti-inflammatory for bronchiectasis Prescribed long-term in some cases
Antitussives (e.g. low-dose codeine) Suppress dry, irritating cough Use with care — consult doctor

🧘 4. Gentle Breathing to Calm Cough Reflex

Some coughs are partly reflexive — especially in ABPA and fungal bronchitis.

Try:

  • Pursed-lip breathing

  • Diaphragmatic (belly) breathing

  • Silent counting breath cycles

  • Box breathing (inhale 4, hold 4, exhale 4, hold 4)

✅ These can reduce throat tension and break cough–irritation cycles.

🍃 5. Avoid Triggers

Many patients notice patterns — keep a cough diary to spot yours.

Common triggers:

  • Dust, damp, mould, perfumes, cleaning sprays

  • Sudden changes in temperature

  • Acid reflux (especially at night)

  • Lying flat without elevation

Tip: Try HEPA air purifiers, keep rooms ventilated, and elevate your pillow at night.

🛌 6. Manage Night-time Cough

  • Use two pillows or a wedge to keep your head elevated

  • Avoid eating or drinking large amounts just before bed

  • Use humidified air

  • Try a warm, non-irritating drink (e.g. water with honey) if safe for you

  • Consider a bedside lozenge or mild cough suppressant on bad nights (with GP approval)

🫁 7. When to Seek Help

Speak to your specialist if:

  • Cough worsens suddenly

  • You develop fever, chest pain, or breathlessness

  • You start coughing up blood or clots

  • You are losing sleep or weight due to cough

  • Current treatments no longer help

You may need:

  • Repeat chest imaging

  • Change in antifungal or steroid dose

  • Additional airway clearance support (e.g. physiotherapy)

  • Blood or sputum tests for infection

🤝 Support Is Available

  • National Aspergillosis Centre (UK) – offers advice and remote support

  • Respiratory physiotherapists – can teach breathing and mucus clearance techniques

  • Patient support groups – many share cough coping strategies

by GAtherton

🫁 Haemoptysis in Aspergillosis: A Complete Patient Guide

1. 🌡 What Is Haemoptysis?

Haemoptysis means coughing up blood from the lungs. It might appear as:

It’s common in conditions like chronic pulmonary aspergillosis (CPA) and sometimes in ABPA.

2. 🚨 When to Worry: Recognising Emergency Bleeding

Call 999 or go to A&E immediately if you experience:

Massive haemoptysis is defined as ≥150 ml in 1 hour or ≥600 ml in 24 hours .

3. 🏥 What Might Happen in Hospital

In more severe cases, you may receive:

  • Oxygen therapy, blood or fluid transfusion

  • Bronchoscopy to localise or control the bleed

  • Bronchial artery embolisation (BAE) guided by CT

  • Possible intubation if breathing is significantly compromised

  • Rarely, surgery or radiotherapy if bleeding persists  aspergillosis.org/haemoptysis/

4. 🗓 Aftercare and Monitoring

Regular follow-up is essential:

  • Repeat chest CT to check healing or detect new issues

  • Sputum cultures, specifically for Aspergillus, TB, NTM

  • Blood tests for Aspergillus IgG/IgE ± galactomannan

  • Clinic review to adjust antifungal therapy, embolisation, or airway clearance

5. 💊 Medications & Prevention

  • Tranexamic acid reduces bleeding and is prescribed short-term aspergillosis.org/haemoptysis/

  • Antifungals (itraconazole, voriconazole) for CPA/aspergilloma

  • Steroids ± antifungals for ABPA

  • Encourage adherence to antifungal/antibacterial treatments

6. 🏡 Practical Advice at Home

7. 🧘 Reducing Cough & Airway Irritation

  • Practice gentle breathing techniques (pursed-lip, diaphragmatic, nasal breathing)

  • Use lozenges or warm honey drink for throat soothing

  • Consider mild codeine or inhaled tranexamic acid if prescribed

  • Avoid cough triggers (hot steam, cold air, vapours)

8. 🆘 Be Prepared: Know Your Plan

  • Carry a medical alert card (e.g., NAC wallet card) explaining your condition to paramedics

  • Keep a written chart of your medications, dosages, and emergency numbers

  • Remove air filters or masks if they are dusty/mouldy — otherwise continue using HEPA systems

9. 😌 Emotional & Psychological Support

  • Anxiety and fear of rebleeding are normal — grounding techniques, breathing exercises, and coping strategies help aspergillosis.org

  • Join support groups to share experiences — Aspergillosis.org has active patient forums

10. 📌 What You Should Ask Your Specialist

  • What was the confirmed or suspected cause (CPA, aspergilloma, ABPA, infection)?

  • Are repeat scans or bronchoscopy needed?

  • Is my current antifungal or antibiotic strategy sufficient?

  • What is the safest way to reintroduce airway clearance or nebulizers?

  • Should I have a bronchial artery embolisation or surgery?

  • How and when can I resume daily activities, including physiotherapy?

by GAtherton

Staying Safe from NTM: A Guide for People with Chronic Lung Conditions

People with lung conditions like Chronic Pulmonary Aspergillosis (CPA), ABPA, bronchiectasis, or anyone with a weakened immune system, can be more vulnerable to nontuberculous mycobacteria (NTM) infections. NTM are environmental bacteria commonly found in soil and water systems — including those in our homes, travel vehicles, and public places.

This guide explains where NTM are found, how to reduce your exposure, and what simple steps you can take to protect yourself.

🏡 At Home

Where NTM Can Grow:

  • Showerheads and taps
  • Bathroom and kitchen plumbing
  • Water tanks (especially warm or old systems)
  • Humidifiers, CPAP machines
  • Garden hoses and outdoor taps
  • Dishwashers and boiling water taps

How to Reduce Risk:

  • Let hot water run for 30 seconds before using showers or taps
  • Clean or replace showerheads every 3–6 months
  • Soak removable parts in 5% white vinegar regularly to reduce biofilm
  • Set your hot water temperature to 60°C or above if safe
  • Avoid inhaling steam directly from showers, kettles, or boiling taps
  • Only use boiled or filtered water in humidifiers or CPAPs
  • Don’t drink water from hoses or little-used outlets

🚗 While Travelling: Campervans, Motorhomes & Campsites

Why It's a Risk:

Water tanks and pipework in motorhomes are often warm and infrequently flushed — ideal conditions for NTM. Shower blocks at campsites can have older plumbing and biofilm build-up.

Tips for Safer Travel:

  • Drain and clean tanks regularly with specialist tank cleaner or white vinegar
  • Don’t drink or cook with tank water unless boiled
  • Flush taps and showers before each use
  • Clean showerheads, hoses, and filters often
  • Avoid breathing in steam from campervan plumbing
  • Let campsite showers run for 30 seconds before using
  • Consider using your own portable water supply if immunosuppressed

🏦 Public and Community Places

Location NTM Risk What to Do
Gyms & Leisure Centres Shared hot tubs and showers Avoid spas and steam rooms
Spas & Pools High aerosol risk from water jets Avoid if immunocompromised
Public fountains or mist systems Aerosols may contain NTM Keep distance
Beauty salons Pedicure footbaths, misters Ask about cleaning routines
Gardens and compost Soil and water aerosols Wear a mask and gloves when gardening

🧰 What About Vinegar?

5% white vinegar (acetic acid) is helpful for disrupting biofilms and reducing NTM contamination in pipes, tanks, and showerheads.

How to Use Safely:

  • Soak parts like showerheads for 30–60 minutes, then rinse
  • Never mix vinegar with bleach
  • Use to flush campervan water systems

Vinegar is not a steriliser, but it may help reduce exposure by breaking down NTM habitats.

🙏 Final Advice

Do: Don’t:
Flush taps and showers weekly Inhale hot steam to face
Clean with vinegar or tank cleaner Use untreated water in nebulisers
Use boiled or filtered water Drink from hoses or unknown sources
Ask about hygiene in shared spaces Touch face after soil or garden work

If you're living with CPA, ABPA or bronchiectasis, small steps can go a long way in reducing your exposure to NTM. Discuss your personal risk with your medical team, and let them know if you have concerns while at home, travelling, or in shared spaces.

by GAtherton

🦠 Understanding IV-to-Oral Switch and Antimicrobial Stewardship for Aspergillosis Patients

💊 What Is Antimicrobial Stewardship (AMS)?

Antimicrobial Stewardship means using antibiotics and antifungal medications in the safest and most effective way possible. This includes choosing the right drug, dose, and duration — and switching from IV to tablets when it's safe.

For people with aspergillosis, this approach helps reduce side effects, lower the risk of infections from drips, and can even shorten hospital stays.

🔁 What Is an IV-to-Oral Switch?

If you've been started on antifungal or antibiotic medication through a drip (IV), your doctors may switch you to tablets once you're stable. This is called an IV-to-oral switch, and it’s a common, safe part of your treatment plan.

✅ Why Make the Switch?

  • You are getting better
  • Tablets can work just as well as IV treatment
  • Less risk of infections from IV lines
  • More comfort and flexibility — and possibly an earlier discharge home

🔍 When Is It Safe to Switch?

Doctors will only switch when:

  • Your temperature is under control
  • You can eat and drink without problems
  • You are stable and improving
  • The oral version of the medicine is suitable for your condition

For antifungals like voriconazole or posaconazole, oral options can be highly effective — some have over 90% absorption.

📉 What Are the Benefits for Patients?

  • Less time in hospital
  • More independence and comfort
  • Reduced risk of bloodstream infections or IV-related complications
  • Fewer needle sticks and better mobility

⚠️ What Are the Possible Downsides?

While most people do very well with oral antifungals, some things to watch for include:

  • Stomach upset: Some tablets may cause nausea or digestive issues
  • Absorption issues: Not all patients absorb tablets equally — especially with vomiting, diarrhoea, or certain gut conditions
  • Strict dosing: Missing oral doses can reduce effectiveness
  • Worries about stopping IV: It’s normal to feel unsure — always ask questions

If you feel unwell or notice side effects after switching, talk to your medical team immediately.

👂 You're Part of the Decision

You can always ask:

  • Why is this switch being made?
  • What should I expect from the tablets?
  • What side effects should I watch for?
  • Who do I contact if I feel worse?

🗣️ Final Thoughts

AMS and IV-to-oral switching are tools to make treatment safer, more comfortable, and just as effective, especially in long-term conditions like aspergillosis. You are always encouraged to speak up, stay informed, and take an active role in your care.

Let your healthcare team know if you have any concerns. Together, you can find the best balance between effective treatment and quality of life.

 

❓ If Oral Is Just as Good — Why Don’t All Doctors Switch Automatically?

Even though IV-to-oral switching is backed by strong evidence and national guidance, in practice, there are a few reasons why it isn’t always done quickly:

🕒 1. Time Pressures

  • Busy hospital wards may not always review IV prescriptions daily.

  • The “default” is often to continue IV unless actively challenged.

📋 2. Lack of Protocols

  • Some hospitals don’t have a clear IV-to-oral policy, or it's not followed routinely.

  • Newer or rotating staff might not be aware of oral alternatives.

🧠 3. Caution or Habit

  • Some doctors feel IV is more powerful or “safer,” even when oral works just as well.

  • Habit and comfort with “tried and tested” approaches can delay change.

🤝 4. Team Communication

  • Decisions about switching often involve multiple people: doctors, pharmacists, nurses.

  • If teams don’t meet daily, switch opportunities may be missed.

👂 5. Patient-Specific Concerns

  • Not all patients are ready: e.g. gut issues, drug interactions, or risk of poor absorption.

  • Concerns about adherence (taking tablets correctly) can also delay the switch.

by GAtherton

NTM Lung Disease: What Aspergillosis Patients Need to Know

Audience: Patients living with chronic pulmonary aspergillosis (CPA), ABPA, or post-TB lung disease

Part 1: What is NTM Lung Disease?

Nontuberculous mycobacteria (NTM) are environmental organisms related to the tuberculosis (TB) bacteria. Found in soil, household water systems, and plumbing fixtures, NTM can cause chronic lung infections in people with damaged or weakened lungs. Unlike TB, NTM is not contagious.

Common NTM Species in Lung Disease

NTM Species Common in Lung Disease?
Mycobacterium avium complex (MAC) Very common
Mycobacterium abscessus Difficult to treat
Mycobacterium kansasii Resembles TB

NTM thrives in individuals with bronchiectasis, cavities, or chronic inflammation—conditions common in aspergillosis patients.

Part 2: 🌬️ How Do People Get Infected with NTM?

✅ The key source: Environment, not people

NTM are common in:

  • Soil

  • Household water systems

  • Showerheads and taps

  • Hot tubs

  • Natural water (lakes, rivers)

When these bacteria become aerosolised (turned into a fine mist), they can be inhaled — especially during:

  • Showering or bathing

  • Using hot tubs or jacuzzis

  • Gardening or digging in soil

  • Running taps or using power tools that spray water

🫁 Who Is Most at Risk?

While many people breathe in NTM without any illness, infection is more likely if you have:

  • Damaged lungs (e.g. bronchiectasis, COPD, prior TB, CPA)

  • Weakened immunity

  • Genetic conditions like cystic fibrosis

⚠️ NTM Is Not Contagious

  • It does not spread from person to person like tuberculosis.

  • You can’t catch it by sharing a room, hugging, or coughing near someone with NTM lung disease.

Part 3: Why Aspergillosis Patients Are at Risk

  • Structural lung damage (e.g., bronchiectasis, cavities)
  • Frequent use of steroids or antibiotics
  • Impaired mucociliary clearance

These factors make the lungs more susceptible to NTM colonization and infection. Studies show 10–20% of CPA patients may also have NTM.

🧫 Epidemiology

  • Increasing globally, especially in developed countries
  • More common in older adults, particularly slender women over 50
  • Also common in cystic fibrosis, COPD, prior TB

📋 Symptoms

  • Chronic cough
  • Fatigue
  • Weight loss
  • Low-grade fever
  • Night sweats
  • Hemoptysis

🧪 Diagnosis

Requires clinical, radiographic, and microbiologic evidence:

  • Consistent symptoms
  • CT scan showing nodules, cavities, or bronchiectasis
  • Positive cultures: 2 sputum or 1 BAL or biopsy + culture

Part 4: Similar to Aspergillosis

NTM symptoms often mimic CPA, asthma, or bronchitis, leading to delayed diagnosis.

Part 5: 📈 Is It a Recent Threat?

  • ✅ Increasing Incidence: From 2–3/100,000 in 1980s to 15–40+/100,000 today
  • 📍 Hotspots: Southeast US, Japan, Brazil, Australia

🔍 Why Is It Emerging?

  1. Aging population with chronic lung disease
  2. Better detection with CT and cultures
  3. More exposure to plumbing aerosols
  4. Drug resistance (especially M. abscessus)

🚨 Public Health Impact

NTM is under-reported, often missed, and difficult to treat. The burden is rising.

Part 6: 🔎 Why Cases Are Missed

  • Symptoms overlap with COPD, TB, ABPA
  • Mycobacterial cultures not routinely ordered
  • CT scans may be misread or misinterpreted

🩺 Missed Opportunities

"I was told it was just post-viral cough. Three rounds of antibiotics and steroids later, I still felt worse."

📢 Improving Awareness

  • New guidelines by ATS, ERS, IDSA
  • Dedicated NTM/bronchiectasis clinics emerging
  • Multidisciplinary teamwork encouraged

📊 Summary Table - current research

Species Key Drugs Imaging Pattern Trials
MAC Azithro + Ethambutol + Rifampin Nodular / cavitary CONVERT, SPR720
M. kansasii Rifampin + INH + Ethambutol Fibrocavitary Historical
M. abscessus IV Amikacin + Macrolides Bronchiectasis + nodules OPTIMA, NIX-NTM

FAQs

Q: Is NTM contagious?
A: No, NTM is not spread person-to-person like TB.

Q: Can I stop treatment early?
A: Only if your specialist advises, and usually not until your sputum cultures are negative for 12 months.

🛣️ The Patient Journey
Before diagnosis: Confusion and frustration
Diagnosis: Relief mixed with fear
Treatment phase: Long, with side effects
Post-treatment: Ongoing monitoring, lifestyle adjustments

💊 Treatment: What to Expect

NTM treatment is often long-term — typically lasting 12 to 18 months, and in some cases longer. It involves taking several antibiotics at once, depending on the NTM species. The goal is to achieve negative sputum cultures and reduce symptoms while preserving lung function.

Common medications: macrolides (azithromycin or clarithromycin), ethambutol, rifampin, and sometimes injectable antibiotics like amikacin.

Common side effects:

Nausea and vomiting — especially during the first few weeks
Fatigue and loss of appetite — can persist throughout treatment
Hearing loss — from amikacin; often requires audiology monitoring
Vision disturbances — from ethambutol; patients may need regular eye exams
Liver inflammation — elevated liver enzymes from rifampin or clarithromycin
Drug interactions — multiple antibiotics can conflict with other medications

Why persevere? Because untreated or undertreated NTM can lead to worsening lung damage, increased breathlessness, and further infections. Completing treatment can stop disease progression, reduce symptoms, and restore quality of life.

"I was on 13 pills a day at one point. My appetite was gone, and I was constantly exhausted. But I pushed through because I didn’t want to lose any more lung function."
"Even though the side effects were tough, I knew stopping early might mean starting all over again — or worse."

💬 Patient Quotes
"I had never heard of NTM. Suddenly I had to understand sputum cultures, drug combinations, and whether I'd lose my hearing from amikacin."
"I felt like I had the flu every day for a year. People thought I was exaggerating — but this illness is invisible."
"I finished treatment and stayed clear for 6 months. Then the cough came back and it was a different strain. I had to start all over."

 What Patients Can Do
Ask your doctor about NTM if you have chronic cough or CPA flare
Avoid hot tubs, humidifiers, and soil exposure
Use sterile water in nebulizers
Join support groups for shared learning

Resources & Testimonials

✨ Final Thought

NTM lung disease may be a hidden complication for aspergillosis patients. But with early detection, specialist care, and support, you can manage it and protect your lung health.

🔚 Summary

NTM lung infections are a growing challenge for people with chronic lung disease, including those with aspergillosis. In the UK, recent studies suggest a prevalence of around 6–7 per 100,000 in the general population, and nearly 28 per 100,000 among those with chronic respiratory disease. This makes it as common—or more common—than tuberculosis in certain groups. While incidence may have declined in primary care settings, detection has likely shifted to hospitals and specialist clinics due to better awareness and diagnostics.

Though not fast-spreading, NTM infections can be progressive and difficult to treat. Recognising symptoms early, accessing testing, and receiving care from a multidisciplinary team are key to avoiding long-term damage and improving outcomes. Stay informed and proactive — NTM may be rare, but for some, it’s a life-altering diagnosis that needs prompt attention.

by GAtherton

📄 Why Have Asthma Rates Risen Despite Cleaner Air?

It might seem surprising, but even though outdoor air pollution has fallen a lot since the 1970s, asthma is more common today — especially in children. Here's why:

🧼 1. Cleaner Isn’t Always Better for the Immune System

Modern lifestyles mean children are exposed to fewer germs early in life. This can cause the immune system to become over-sensitive, making allergies and asthma more likely. This is called the "hygiene hypothesis."

👩‍⚕️ 2. Better Diagnosis

Asthma is diagnosed much more often now than in the past. In the 1970s, many children with wheezy breathing weren't given a diagnosis. Today, doctors recognise and treat asthma early. That means the numbers look higher — but some of it is due to better awareness.

🏠 3. Indoor Pollution

While outdoor air has improved, indoor air can be a problem:

  • Gas cookers, damp and mould
  • Dust mites and cleaning sprays
  • Less fresh air due to sealed homes These things can all affect breathing and trigger asthma.

🚗 4. Modern Air Pollution Still Affects Us

Pollution from traffic (especially nitrogen dioxide and tiny particles called PM2.5) is still a problem — especially near busy roads. These can irritate lungs and make asthma worse, even at low levels.

⚖️ 5. Lifestyle Factors

Obesity increases the risk of asthma, and more children are now overweight. Children also spend more time indoors and less time being active, which may affect lung health.

🧬 6. Genetics and Early Exposures

Family history matters, and things like antibiotics, pollution, or infections during pregnancy or early life can influence a child’s risk of developing asthma.

✅ Good News

Even though more people have asthma, it’s much better managed today:

  • Inhalers are more effective
  • Fewer people die from asthma
  • Most children and adults with asthma can live full, active lives with the right support

🩺 Has Cleaning Our Air Been Worth It?

Despite the rise in asthma diagnoses, cleaning up the air has been a major public health success:

✔️ Major Benefits:

  • Huge drop in bronchitis, pneumonia, and childhood chest infections
  • Far fewer hospital admissions for acute respiratory illness
  • Respiratory deaths due to coal smoke, sulphur dioxide, and black soot have plummeted
  • Safer air for people with long-term lung conditions like COPD, ABPA, and CPA

🤔 Why Asthma Went Up Anyway:

As the section above explains, asthma is influenced by more than just air pollution:

  • Indoor air, allergens, obesity, early-life exposures, and genetic factors all matter
  • Better detection and survival also increase the number of people living with asthma

🔍 The Bigger Picture:

Even though asthma became more common, the severity of lung disease has dropped for many people thanks to:

  • Better inhalers and treatments
  • Early diagnosis
  • Cleaner air and less exposure to smoke and harmful chemicals

So yes — cleaning the air has been worth it. It’s saved lives and made breathing easier for millions. But like most things in health, it's one part of a much bigger story.

Let your healthcare team know if you have questions — understanding your environment and your own triggers can help you breathe easier, wherever you live.

 

by GAtherton

🫁 Biologics for Severe Asthma and Respiratory Conditions: What to Expect

A guide to when they start working, patient experiences, how long the benefits last — and what to know about Tezepelumab

Biologic treatments — like omalizumab, mepolizumab, benralizumab, dupilumab, and now tezepelumab — have transformed care for people with severe asthma and related lung conditions. But many patients naturally ask:

  • When will I start to feel better?

  • Will the benefit last?

  • Am I eligible for this treatment?

  • What if it wears off or I stop taking it?

  • Which biologic is right for me?

💷 Access to Biologics: Who Can Have Them?

Biologics are highly effective — but they are also expensive treatments, often costing £10,000–£30,000 per year. Because of this, the NHS only offers them to patients who meet strict criteria.

This helps ensure:

  • Fair access

  • Best use of NHS resources

  • That patients are likely to benefit

✅ To qualify for a biologic, patients must typically:

  1. Have confirmed severe asthma

    • Symptoms remain poorly controlled despite taking:

      • High-dose inhaled steroids (ICS)

      • Long-acting beta agonists (LABAs)

      • Other controller medication (e.g. montelukast)

  2. Have frequent asthma attacks

    • Usually 2 or more flare-ups in the past year needing:

      • Oral steroids (e.g. prednisolone)

      • A&E or hospital care

  3. Be using their inhalers properly and regularly

    • Doctors will check that medication is being taken as prescribed

    • Inhaler technique must be correct

    • Other problems (like reflux or anxiety) must be addressed first

  4. Have the right blood or allergy profile
    (This depends on which biologic is being considered):

Biologic Biomarker Criteria
Omalizumab IgE in range + allergic asthma
Mepolizumab/Benralizumab Eosinophils ≥150–300 cells/µL
Dupilumab Raised FeNO or IgE, plus eosinophilic features
Tezepelumab Works in a wider group, including low eosinophils

  1. Be assessed by a specialist team

    • Biologics are only prescribed after a full multidisciplinary review in a specialist asthma service

🔄 After Starting:

  • Patients are reviewed after 3–6 months

  • If there’s no improvement, treatment is stopped

  • Continued use depends on measurable benefit, such as:

    • Fewer attacks

    • Reduced steroid need

    • Better lung function or asthma control scores

💬 "Biologics are not a quick fix — but when matched carefully, they can be life-changing."

⏳ When Will I Start Feeling Better?

Most patients begin to feel some improvement within the first few weeks to three months.

🟩 What Other Patients Say:

  • Lynn (USA):

    “Within five days, I could tell … I was not coughing as much.”

  • Mena, 17 (USA):

    “She doesn’t have to rely on steroids as much.”
    “Now I’m stable.”

  • Catherine, 88 (UK):

    “Since taking biologics, I’ve not had to call the office about breathing problems once.”

  • UK Patient Survey:

    “Biologic treatment stopped the disruption of family and social life.”
    “Energy and mental health improved by 3 months.”

📈 Typical Timeline of Benefits:

Time After Starting What You May Notice
1–2 weeks Less coughing, better sleep, reduced night symptoms
2–4 weeks Easier breathing, less tightness, more energy
1–3 months Fewer flare-ups, less need for oral steroids
3–6 months Improved walking, daily life, and lung test scores
12 months Full review of benefit — continued if effective

📆 How Long Do the Benefits Last?

If the biologic is working and you stay on treatment, the benefits can last for years:

  • Many patients remain stable for 1–5 years or more

  • Biologics are ongoing treatments — not cures, but long-term control

  • If stopped, some patients stay well for a time, while others relapse

💡 Spotlight on Tezepelumab (Tezspire)

Tezepelumab is a newer biologic that works differently from the others — it targets TSLP, an upstream trigger of inflammation. This makes it suitable for a broader range of asthma patients, including those without high eosinophils or obvious allergies.

🔹 How It Works:

  • Blocks TSLP (thymic stromal lymphopoietin) — a key driver of inflammation

  • Works across multiple asthma types (eosinophilic, allergic, non-allergic)

🔹 Dosing:

  • 210 mg injection every 4 weeks (subcutaneous)

🔹 Benefits (NAVIGATOR & DESTINATION trials):

  • Reduces asthma attacks by 56% regardless of eosinophil count or allergic status

  • Improvement often seen within 2–4 weeks, with continued benefit over 1–2 years

  • Long-term studies show sustained effectiveness and good safety

  • After stopping, inflammation gradually returns but may remain better than baseline for a while

🧠 Tezepelumab is especially promising for patients who haven’t responded well to other biologics, or who don’t fit into the eosinophilic or allergic categories.

✅ In Summary:

Question Typical Answer
When will I feel better? 2–12 weeks, sometimes faster
How long does it last? Months to years if treatment continues
What if I stop? Symptoms may return gradually
Who can get a biologic? Patients meeting NHS criteria, reviewed by specialists
Tezepelumab use? For broad asthma types, including low-eosinophil asthma

by GAtherton