Aspergillosis & Asthma: When Risks Peak Through the Year

Many people living with aspergillosis, asthma, or bronchiectasis notice that their symptoms change with the seasons.
This is no coincidence — environmental factors such as temperature, humidity, pollen, spores, and viral infections all vary through the year, and these can strongly influence both lung health and allergic or fungal disease.

Understanding these patterns can help you plan ahead, reduce exposure, and know when to take extra care.

🌸 Spring: Pollen and Early Spore Season

As temperatures rise, tree pollen (especially birch, oak, and plane) and Aspergillus spores begin to increase in outdoor air.
For people with Allergic Bronchopulmonary Aspergillosis (ABPA) or Severe Asthma with Fungal Sensitisation (SAFS), this can trigger cough, wheeze, and chest tightness.

  • Keep an eye on Met Office pollen and spore forecasts.

  • Open windows on dry days, but check for signs of mould indoors, especially around windows and bathrooms.

  • If you notice symptoms flaring every spring, let your respiratory team know — small medication adjustments may help.

📊 Data source: Met Office spore count data.

☀️ Summer: Soil, Compost, and Renovation Hazards

Warm, humid conditions mean fungi thrive — especially outdoors.
Compost heaps, garden soil, and grass cuttings can release very high levels of Aspergillus spores.
People with chronic lung disease, ABPA, or Chronic Pulmonary Aspergillosis (CPA) are at greater risk of exacerbations during this period.

  • If gardening or using compost, wear gloves and an FFP2/FFP3 mask.

  • Avoid turning compost heaps or cleaning bird feeders if you are immunocompromised.

  • Keep home humidity below 60% and ventilate well during warm spells.

🪴 Source: Protective mask and compost safety advice.

🍂 Autumn: Damp Homes and Viral Load

As the weather cools, we close windows and turn on heating — trapping moisture indoors.
This increases damp and mould growth, particularly in poorly ventilated areas.
At the same time, colds, flu, and RSV infections surge, all of which can make fungal or allergic conditions worse.

  • Use a dehumidifier and ensure air can circulate behind furniture.

  • Check for leaks, condensation, or cold corners.

  • Stay up to date with flu and COVID vaccinations if eligible.

💧 Source: Aspergillosis.org damp guidance.

❄️ Winter: Indoor Season and Medication Review

Outdoor spore levels are lowest in winter, but indoor exposure dominates — from bathrooms, humidifiers, and heating systems.
Viral infections remain a major trigger for asthma and ABPA flare-ups, and antifungal or steroid treatments may need review.

  • Keep homes warm but ventilated where possible.

  • Review your treatment plan with your clinical team, especially if you’re using steroids or biologics.

  • Contact your GP or specialist early if you notice an increase in cough, breathlessness, or mucus plugs.

🧭 Key Takeaway

Aspergillosis and asthma flare-ups often follow the seasons:

Season Main Risks Take Action
Spring Pollen, outdoor spores Monitor counts, check home for mould
Summer Compost, soil, renovation dust Use masks/gloves, avoid heavy exposure
Autumn Damp homes, viruses Dehumidify, ventilate, manage infections
Winter Indoor air, viruses Keep warm, review treatment

By spotting your personal pattern, you and your care team can plan ahead — reducing exacerbations and staying well all year.

by GAtherton

🧠 Article 2: Why Awareness Matters – Staying Safe and Confident on Aspergillosis Treatment

Subtitle: How understanding your medicines can protect you and improve your quality of life.

💬 Awareness Means Safety

For people managing aspergillosis or related lung conditions, awareness isn’t just about learning facts — it’s about staying safe.
Knowing how your treatment works, what to expect, and who to ask for help gives you control and confidence.

1️⃣ Awareness Builds Understanding

Understanding each medicine’s purpose helps you:

  • Recognise genuine warning signs early.

  • Avoid anxiety over mild or harmless side effects.

  • Know when something needs professional advice.

Example: a patient who knows voriconazole can cause brief light sensitivity won’t panic, but they will report a new rash or jaundice straight away.

2️⃣ Awareness Improves Communication

Informed patients are better partners in care.
You can explain symptoms clearly, ask the right questions, and notice how medicines affect you.
This helps doctors and nurses tailor treatment quickly and safely.

3️⃣ Awareness Supports Safer Treatment

Many aspergillosis patients take multiple interacting medicines — antifungals, steroids, antibiotics, and sometimes biologics.
Being aware of potential interactions means you can prevent problems before they happen.

You can check interactions using the official
👉 BNF Interactions Checker – NICE Medicines Guidance
(Free, reliable, and used by UK healthcare professionals.)

💡 Tip: If you find a possible interaction online, don’t stop any medicine yourself. Take a screenshot or note and discuss it with your pharmacist or specialist.

🧴 Awareness Includes Working With Your Pharmacist

Pharmacists — both hospital and community — are a vital part of your care team.
They are medicine specialists who can:

  • Review your prescriptions for clashes between antifungals, steroids, and other drugs.

  • Advise how to take medicines for best absorption (for example, itraconazole with food, not with omeprazole).

  • Explain potential side effects and how to manage them safely.

  • Contact your GP or hospital consultant if adjustments are needed.

Whenever you start or stop a medicine — even an over-the-counter painkiller or herbal supplement — let your pharmacist know.
They can quickly check your full medication list using the same professional databases doctors use.

🧭 Remember: Your pharmacist is your first safety checkpoint.
They’re there to protect you, clarify confusion, and help your medicines work safely together.

4️⃣ Awareness Builds Confidence and Control

Long-term illness can feel unpredictable.
Understanding your medicines helps you:

  • Manage flare-ups calmly.

  • Recognise early changes and act quickly.

  • Feel more confident talking with your care team.

Research shows that informed patients have fewer hospital admissions, better symptom control, and improved wellbeing.

⚖️ Balanced Information

Awareness is only helpful if it’s accurate.
Stick to trusted sources such as:

  • aspergillosis.org

  • NHS and NICE websites

  • Your hospital’s patient information leaflets

  • Local or hospital pharmacists who can explain details clearly

Avoid social-media “miracle cures” or alarming headlines that lack evidence.

🌱 The Bottom Line

Awareness doesn’t just make you more knowledgeable — it makes you safer.

Learn what each medicine does, recognise early warning signs, and use trusted resources like the BNF Interactions Checker and your pharmacist to keep your treatment on track.
Awareness turns uncertainty into confidence — and confidence into better health.

🔗 Related Resource

Managing Side Effects of Aspergillosis Treatments » — detailed guide to medicines, monitoring, and how pharmacists and doctors work together to keep you safe.

by GAtherton

🩺 Article 1: Managing Side Effects of Aspergillosis Treatments

Subtitle: What to expect, how to recognise problems early, and when to ask for help.

💊 Why This Matters

People living with aspergillosis, bronchiectasis, or Primary Ciliary Dyskinesia (PCD) often take several medicines for months or even years.
These drugs are vital for controlling infection, inflammation, and allergic reactions — but they can also cause side effects or drug interactions.

Being aware of what’s normal, what’s not, and when to seek help helps you stay safe while getting the most from treatment.

⚗️ Antifungal Medicines

Antifungal (azole) drugs are the backbone of treatment for Chronic Pulmonary Aspergillosis (CPA) and Allergic Bronchopulmonary Aspergillosis (ABPA).
They control infection but can affect the liver, heart, or skin, so regular blood monitoring is essential.

Itraconazole (Sporanox® / generic)

Used for long-term control in CPA and ABPA.

  • Common: tiredness, nausea, ankle swelling, blurred vision.

  • Serious: yellowing skin/eyes, dark urine, shortness of breath.

  • Tips:

    • Take with a main meal or fizzy drink (acidic stomach aids absorption).

    • Avoid taking it with omeprazole or similar acid-reducing drugs, as these block absorption.

    • Have regular liver-function and drug-level blood tests.

    • Report ankle swelling or jaundice immediately.

Voriconazole (Vfend®)

Used when itraconazole isn’t effective or tolerated.

  • Common: temporary visual flashes or blurred vision, sunlight sensitivity, mild headache.

  • Serious: severe rash, blistering, or long-term skin-cancer risk from sunlight.

  • Tips:

    • Always use SPF 30+ sun cream, even in winter.

    • Avoid prolonged sun exposure.

    • Report any visual change, rash, or fatigue promptly.

    • Blood monitoring checks for safe drug levels.

Posaconazole (Noxafil®)

Used for resistant infections or as a second-line therapy.

  • Common: nausea, diarrhoea, fatigue.

  • Serious: liver inflammation, low potassium (causing muscle cramps or irregular heartbeat).

  • Tips:

    • Take with a main meal or full-fat snack.

    • Report unexplained muscle weakness or palpitations.

    • Keep up with blood tests.

Isavuconazole (Cresemba®)

A newer antifungal option that may cause fewer interactions.

  • Common: headache, mild nausea, ankle swelling.

  • Tips:

    • Continue regular liver and kidney checks.

    • Report any new swelling, fatigue, or breathlessness.

💨 Corticosteroids

(Prednisolone, Methylprednisolone, Hydrocortisone)
These reduce inflammation and allergic response in ABPA and asthma.
They are powerful — but long-term use can affect weight, mood, bones, and hormone balance.

  • Common: increased appetite, fluid retention, mood swings, difficulty sleeping.

  • Long-term: thinning bones, higher blood sugar, adrenal suppression.

  • Tips:

    • Never stop suddenly — always taper under medical advice.

    • Carry a Steroid Emergency Card.

    • Ask about bone protection (vitamin D, calcium, bisphosphonates).

    • See your GP if you feel very tired, dizzy, or unwell.

🧬 Biologic Treatments

(Mepolizumab, Benralizumab, Omalizumab)
These injection-based medicines target inflammation or allergic responses in severe asthma or ABPA.

  • Common: mild injection-site soreness, tiredness, headache.

  • Occasional: mild fever or muscle aches.

  • Serious: allergic swelling of lips, tongue, or throat.

  • Tips:

    • Record any mild reactions.

    • If you develop swelling or difficulty breathing, call 999 immediately.

💊 Long-Term Antibiotics

(Azithromycin, inhaled colomycin, tobramycin)
Used to reduce bacterial infections in bronchiectasis or PCD.

  • Common: stomach upset, diarrhoea, mild throat irritation.

  • Long-term: tinnitus or hearing loss (especially with azithromycin).

  • Tips:

    • Have periodic hearing checks.

    • Rinse mouth and nebuliser after inhaled antibiotics.

    • Report ringing in the ears, severe diarrhoea, or rash.

⚠️ Drug Interactions

Antifungal medicines (especially azoles) can interfere with many common drugs, including:

  • Steroids (e.g., prednisolone, fluticasone) — may increase steroid levels.

  • Reflux medicines (e.g., omeprazole, lansoprazole) — reduce antifungal absorption.

  • Statins and warfarin — increase risk of side effects or bleeding.

  • Some antihistamines and antibiotics — can affect heart rhythm.

These interactions can be complex — always check before starting or stopping any medication.

✅ Check it yourself:
You can use the official BNF Interactions Checker (NICE Medicines Guidance) to see if two medicines are known to interact.
Simply type the names (e.g., itraconazole and prednisolone) and it will show the risk level, what the interaction does, and what clinicians usually recommend.
If unsure, show the result to your GP, pharmacist, or hospital team — they can interpret it for your situation.

🚨 When to Seek Help

Call your specialist or GP urgently if you notice:

  • Yellowing of skin or eyes

  • Severe rash, blistering, or peeling

  • New ankle swelling or breathlessness

  • Sudden fatigue or dark urine

  • Visual changes or increased photosensitivity

  • Ringing in the ears or hearing loss

If you feel acutely unwell, do not stop your medication abruptly — contact your hospital team or emergency services.

🔗 Next read: Why Awareness Matters – Staying Safe and Confident on Aspergillosis Treatment »

by GAtherton

⚠️ Omeprazole and PPIs: What’s Behind the Recent Warning?

Recently, several newspapers – including The Mirror – reported that a “BBC doctor” had issued a warning to anyone taking omeprazole, a commonly prescribed drug for acid reflux and heartburn.
So, is this something new, or just another media scare? Let’s look at what the evidence actually says – and what it means if you’re living with aspergillosis, bronchiectasis, or other chronic lung diseases.

💊 What Are PPIs?

Proton Pump Inhibitors (PPIs) such as omeprazole, lansoprazole, and esomeprazole are medicines that reduce stomach acid.
They’re often used to:

  • Treat reflux, indigestion, or stomach ulcers

  • Protect the stomach from irritation caused by anti-inflammatory drugs or steroids

They’re very effective and widely prescribed — millions of people in the UK take them every day.

⚠️ Why the Headlines?

The recent news stories stem from a discussion on BBC Morning Live, where GP Dr Punam Krishan highlighted the potential long-term side effects of PPIs.
Although these aren’t “new discoveries”, they serve as an important reminder that long-term PPI use should be reviewed regularly.

🧠 What the Evidence Shows

Research over the past decade has shown that taking PPIs for a long time or at high doses can lead to several possible side effects:

Possible Issue What Happens Why It Matters
Infections Higher risk of gut infections such as Clostridioides difficile and bacterial overgrowth Stomach acid normally helps kill harmful bacteria; reducing it alters the balance
Changes in gut microbiome Loss of protective “friendly” bacteria May influence digestion, immunity, and inflammation
Reduced absorption of nutrients Low magnesium, iron, or vitamin B12 Can lead to tiredness, cramps, or anaemia
Bone health Slightly higher risk of fractures with very long-term use May relate to calcium absorption
Kidney and heart effects (rare) Observed in some studies Still being researched

Most of these risks are small, and for many people the benefits outweigh them — but it’s still important to make sure you’re taking the lowest effective dose and that your doctor reviews the need for it periodically.

🫁 Why It Matters for Aspergillosis and Lung Conditions

If you have aspergillosis, bronchiectasis, or Primary Ciliary Dyskinesia (PCD), there are extra reasons to think carefully about long-term PPI use:

  • Microbiome connections: The gut and lungs are linked through what’s called the gut–lung axis. Disturbances in gut bacteria can affect immune responses elsewhere in the body — possibly including the lungs.

  • Infection control: PPIs can slightly increase the risk of bacterial or fungal overgrowth in the gut. While this doesn’t directly cause lung infection, it may influence the body’s balance between helpful and harmful microbes.

  • Medication interactions: Some antifungal medicines (like itraconazole or posaconazole) rely on stomach acidity for absorption — so PPIs can reduce their effectiveness. Your specialist will usually time doses or adjust medication accordingly.

  • Reflux and aspiration: On the other hand, reflux itself can worsen lung disease if acid is inhaled into the lungs — so stopping PPIs suddenly can make things worse. Always discuss any change with your doctor first.

🩺 What You Can Do

If you take omeprazole or another PPI:

  1. Check why you’re on it – Is it for reflux, ulcer protection, or another reason?

  2. Review the dose and duration – Many people can step down to a lower dose or switch to on-demand use once symptoms are controlled.

  3. Don’t stop suddenly – Stopping PPIs abruptly can cause a rebound in acid production and make symptoms flare.

  4. Ask about alternatives – Some people can switch to H2-blockers (e.g. ranitidine-type medicines), or use lifestyle changes such as avoiding late meals, raising the bedhead, and reducing caffeine or alcohol.

  5. Discuss with your specialist team – Particularly if you’re also on antifungal or antibiotic treatments, as interactions can occur.

🧩 Key Takeaway

The recent headlines about omeprazole are not new, but they highlight a genuine issue:
PPIs are very useful drugs — but long-term use should always be reviewed to make sure the benefits outweigh the risks.

For most people, there’s no need to panic.
Just make sure you:

  • Use the lowest effective dose

  • Review your need for PPIs at least once a year

  • Discuss any concerns with your respiratory or gastroenterology team

🔗 Useful References

by GAtherton

🌿 Will My Body Start Making Cortisol Again After Long-Term Prednisolone?

Many people with Allergic Bronchopulmonary Aspergillosis (ABPA) take prednisolone (a corticosteroid) for long periods to control inflammation and prevent flare-ups.
A common concern is whether the body will ever start producing its own natural steroid hormone, cortisol, again after so many years of treatment.

💡 Why Cortisol Matters

Cortisol is a vital hormone made by your adrenal glands.
It helps your body manage stress, maintain healthy blood pressure, control inflammation, and balance energy levels.
Your brain normally regulates this through the HPA axis (Hypothalamus–Pituitary–Adrenal axis).

When you take prednisolone, your body senses there’s already enough steroid circulating, so your brain switches off the signal that tells the adrenals to make cortisol.
Over time, the adrenal glands can “go to sleep”.

⏳ After Long-Term Prednisolone Use

If you’ve taken prednisolone for months or years, your adrenal glands may not restart immediately — and sometimes not completely.
Recovery depends on several factors:

Factor How It Affects Recovery
Length of treatment The longer you’ve been on steroids, the slower recovery tends to be
Average daily dose Higher doses suppress the adrenal glands more strongly
Tapering speed A gradual, careful reduction helps the adrenals “wake up” again
Individual differences Some people recover in months, others may need lifelong steroid replacement (hydrocortisone tablets)

📅 What to Expect

  • After short courses (a few weeks), cortisol production usually returns quickly.

  • After many months or years, recovery can take months or even years.

  • Some people never regain full adrenal function and need lifelong replacement therapy.

Your specialist will usually assume your adrenal glands are suppressed until tests prove otherwise.

⚠️ Why Adrenal Suppression Is a Safety Concern

If your adrenal glands are not producing cortisol and you suddenly stop prednisolone, or become ill, have an accident, or need surgery, your body can’t produce the extra steroid it needs to handle stress.
This can cause a serious medical emergency called adrenal crisis, which may lead to low blood pressure, collapse, or shock if untreated.

That’s why it’s vital to:

  • Carry a Steroid Emergency Card or Medical Alert bracelet at all times

  • Tell healthcare staff (doctors, dentists, pharmacists, A&E teams) that you’re on or recently stopped steroids

  • Never miss a dose and never stop suddenly without medical advice

  • Use “stress-dose” steroids during illness, surgery, or injury as advised by your doctor

These simple precautions can be life-saving if your body can’t make enough cortisol during stress.

💨 What About Inhaled Steroids?

Many people with ABPA or asthma also use inhaled corticosteroids (such as fluticasone, budesonide, or beclometasone) in combination inhalers like Seretide, Symbicort, or Fostair.
These medicines mainly act in the lungs and only a small amount enters the bloodstream — but at high doses or with long-term use, they can still partly suppress the adrenal glands, especially when combined with oral steroids or certain antifungal medications.

Adrenal suppression is more likely if:

  • You use high-dose inhaled steroids for many months or years (e.g. fluticasone >500 µg/day)

  • You also take oral steroids (even at low doses)

  • You’re on antifungal medicines such as itraconazole, voriconazole, or posaconazole, which slow steroid breakdown

  • You are particularly sensitive to steroid effects

If suppression occurs, you might feel unusually tired, dizzy, or weak — especially when unwell or under stress.

Your doctor may test your morning cortisol or do a Synacthen test if there’s any concern.
In some cases, patients on high-dose inhaled therapy are also advised to carry a steroid card for safety, just like those on oral steroids.

The good news is that inhaled steroids are much safer than long-term oral prednisolone, and the risk of serious adrenal problems remains low when used correctly.

🧪 How Doctors Check for Recovery

Your respiratory or endocrine team may arrange:

  • Morning cortisol blood test (before your usual dose)

  • ACTH stimulation test (Synacthen test) – to see how well your adrenal glands respond

These tests help guide your doctors in determining whether your body is producing enough cortisol naturally or if you require a maintenance or replacement dose.

💊 Why Some Patients Move from Prednisolone to Hydrocortisone

If you’ve been on long-term prednisolone and your body is no longer making enough cortisol, your doctor may switch you to hydrocortisone.
Hydrocortisone is almost identical to the natural cortisol your body should produce.

Feature Prednisolone Hydrocortisone
Strength 4–5 times stronger than cortisol Matches the body’s natural cortisol
Duration of action Long-acting (12–36 hours) Short-acting (6–8 hours)
Typical use Controls inflammation during flares Replaces missing cortisol when adrenals are suppressed

Hydrocortisone is used as replacement therapy, not as an anti-inflammatory drug.
It’s given when your adrenal glands are “asleep” after long-term steroid use — or permanently if they no longer recover.

Doctors may switch to hydrocortisone if:

  • Tests show adrenal suppression (low morning cortisol or poor Synacthen test results)

  • You’ve finished tapering off prednisolone, but still feel unwell or fatigued

  • You have symptoms of adrenal insufficiency, such as dizziness, nausea, or low blood pressure

  • You need more precise stress dosing during illness or surgery

Hydrocortisone more closely mimics the body’s natural rhythm, usually taken two or three times a day, with an increased dose during illness or stress.

If you’re on hydrocortisone:

  • Carry a Steroid Emergency Card and make sure it’s visible to healthcare staff.

  • Never stop suddenly.

  • Increase (“double”) your dose when you’re ill or having surgery, as advised by your doctor.

  • Seek urgent medical help if you vomit and can’t keep tablets down — you may need an injection.

For many ABPA patients, hydrocortisone is temporary, helping to support the body until natural cortisol production recovers.
In others, especially after many years of prednisolone, it may become a lifelong replacement, which is safe and well managed under specialist supervision.

💉 The Future: Reducing Dependence on Prednisolone

The good news is that newer treatments called biologics are changing how ABPA is managed.
Biologics such as mepolizumab, benralizumab, dupilumab, and omalizumab target specific immune pathways involved in ABPA rather than suppressing the whole immune system.

For many patients, biologics:

  • Reduce or replace the need for long-term steroids

  • Lower the risk of adrenal suppression

  • Control symptoms more precisely, with fewer side effects

This means more people with ABPA may, in the future, safely taper off prednisolone and give their adrenal glands a chance to recover — always under close medical supervision.

🌤️ In Summary

After many years on prednisolone for ABPA, some people’s adrenal glands do recover, while others remain partially or fully dependent on replacement steroids.
Recovery is slow, varies between individuals, and must be guided by your specialist.
Be aware that both oral and inhaled steroids can suppress the adrenals if used long-term or at high doses.
Carrying a steroid emergency card and knowing what to do in an emergency is essential for safety — especially while your adrenals are still “waking up.”
With newer treatments like biologics and careful follow-up, the goal is to reduce steroid dependence and protect your long-term health.

by GAtherton

Damp, Mould and Health: Be Careful About Unvalidated Tests and “Detox” Treatments

Updated 2025 – by the NAC CARES team

When you’re desperate for answers

If you live in a damp or mouldy home and your health has suffered, it’s natural to want clear answers. Many people experience coughing, fatigue, sinus trouble or breathing problems and wonder if mould exposure could be the cause.

Unfortunately, the internet is full of misleading claims about “toxic mould”, “biotoxin illness”, or “mould detox”. Some websites and private clinics sell unvalidated medical tests or promote expensive supplements claiming to “flush mould toxins” or “reverse mould illness”.

People often turn to these options out of frustration and desperation when they feel ignored or dismissed by health or housing services. But it’s important to know that these tests and products are not scientifically proven — and in some cases, they may cause harm.

The truth about “mould illness” testing

At present, there is no validated medical test that can prove a person is ill because of mould exposure in their home.

Tests often sold online or through private clinics — such as urine mycotoxin tests, mould antibody panels, or chronic inflammatory response syndrome (CIRS) profiles — are not recognised by the NHS, NICE, or the World Health Organization.

These tests may detect trace amounts of mould-related compounds that appear even in healthy people. There are no agreed normal or abnormal levels, and results can vary dramatically between labs. This means a “positive” test result does not prove illness or guide treatment.

When functional, integrative, or alternative practitioners use these tests

It’s not just online sellers. Some functional medicine, integrative health, or alternative practitioners — including some with medical or allied health qualifications — also use these same mould or mycotoxin tests in private practice.

They may genuinely want to help and believe in “root cause medicine,” but:

  • Many of these tests have never been validated in peer-reviewed clinical studies.

  • Their results cannot reliably distinguish between normal environmental exposure to fungi and actual infection or allergy.

  • People are sometimes told they have “mould toxicity” or “mycotoxin poisoning” without any scientific evidence.

Why this matters

  • It can lead to unnecessary fear and anxiety.

  • Patients may spend hundreds or thousands of pounds on testing, supplements, or “detox” treatments that do not work.

  • Most importantly, genuine medical conditions — like aspergillosis, asthma, or COPD — may be diagnosed late or missed entirely.

Even if the practitioner sounds credible, unvalidated tests remain unvalidated.
If it isn’t approved by NICE, the NHS, or recognised respiratory specialists, it isn’t a reliable diagnostic test.

The risks of “detox” and self-treatment

Many websites and practitioners also recommend “detox” products such as activated charcoal, bentonite clay, chlorella, ozone therapy, or special anti-fungal diets. None of these have been proven to remove mould or mycotoxins from the body.

Some are unsafe or can interact dangerously with prescribed medicines — especially antifungal or steroid treatments used for aspergillosis. Others can damage the gut, lungs or kidneys.

No supplement, spray, or air treatment can replace medical therapy or proper repair of damp housing.

Why these products are still allowed to be sold

These tests and supplements often remain on sale because of regulatory loopholes:

  • They’re marketed as “wellness” or “informational” tests rather than diagnostic tools.

  • Supplements are classed as foods, not medicines — they must be safe, but not proven effective.

  • Many sellers are based overseas, outside UK or EU enforcement.

That’s why public awareness is crucial. Legal does not mean scientifically valid.

If you see misleading health claims, you can report them to:

What is proven to help

Here’s what current evidence supports:

  • Talk to your NHS doctor or respiratory specialist. They can arrange validated tests for fungal disease and lung health.

  • Fix the source of damp or mould. That’s the key to protecting your health — not detox kits.

  • Seek help early from housing officers, environmental health, or Citizens Advice if your home is unsafe.

  • Work with your care team — they can support housing letters or referrals if damp is affecting your condition.

See our practical guides:

If you feel dismissed or desperate

You’re not alone. Many people living in damp conditions feel frustrated and unheard. But unvalidated tests and detox programmes will not provide the answers you deserve.
You will get more meaningful, safer support through:

🛡️ Why We Take a Cautious Approach

Some people wonder whether organisations like ours are “allied to big pharma” or dismiss alternative approaches because of financial or legal pressures.

The truth is: we are cautious because of evidence and patient safety, not loyalty to industry.

  • We recommend only treatments or tests that are scientifically proven to be safe and effective.

  • NHS and charity organisations must follow regulatory standards and cannot endorse unvalidated products.

  • Our priority is protecting patients from harm, wasted resources, and delays in care.

Being cautious doesn’t mean rejecting innovation. If a new antifungal therapy, dietary approach, or environmental test is genuinely effective, it will be validated through peer-reviewed research — and we will share it.

Until then, our guidance focuses on evidence-based medicine and environmental interventions, because those are proven to help people with aspergillosis.

Key message

Damp and mould can make you unwell — but there is no quick test, no secret biomarker, and no miracle detox that can prove or cure it.
Stick with evidence-based medicine, protect your living environment, and seek support from trustworthy sources.

Save your money, protect your health, and trust science.

by GAtherton

💬 Healthwatch: Your Local Voice in the NHS

Living with a long-term lung condition such as aspergillosis, asthma, or bronchiectasis often means regular contact with hospitals, GPs, and community clinics.
Sometimes things work well — and sometimes they don’t.
That’s where Healthwatch comes in.

Healthwatch is an independent organisation that represents patients and the public.
It exists to make sure your experiences help shape the way NHS and social-care services are delivered.

🏛️ What is Healthwatch?

Healthwatch was set up by law to be the official voice of patients and the public in health and social care.

There are two levels:

  • Healthwatch England – works nationally to influence NHS and government policy

  • Local Healthwatch – works in every local authority area across England, gathering feedback from people using local services

Healthwatch is not part of the NHS, and it’s not a complaints service, but it does have statutory powers to:

  • Listen to people’s experiences of care

  • Report issues and make recommendations to the NHS, local councils, and care providers

  • Request responses from organisations it investigates

  • Escalate serious concerns to the Care Quality Commission (CQC)

Learn more on the Healthwatch website.

🌿 Why Healthwatch matters to aspergillosis patients

People living with chronic lung disease often face delays, limited understanding, or difficulties accessing ongoing support.
Healthwatch helps make sure those experiences aren’t ignored.

1. Raising the patient voice

You can share your experience of healthcare — good or bad — with your local Healthwatch.
They collect stories from across the community and use them to:

  • Identify patterns (for example, problems with accessing respiratory clinics or antifungal monitoring)

  • Produce reports and recommendations for local NHS decision-makers

  • Push for improvements to long-term care pathways and community support

2. Helping to improve new neighbourhood health hubs

As NHS care moves into the community, Healthwatch plays a key role in making sure new Neighbourhood Health Hubs are:

  • Accessible for people with limited mobility or oxygen needs

  • Located where public transport and parking work for patients

  • Designed with chronic-illness patients in mind, not just short-term care

You can feed in your ideas through Healthwatch about what’s working and what isn’t in new NHS community models.

3. Providing information and signposting

If you’re unsure where to go for care — GP, hospital, or new health hub — or how to complain or appeal a service decision, Healthwatch can point you in the right direction.
They offer clear, local information about:

  • NHS patient transport

  • The Healthcare Travel Costs Scheme (HTCS)

  • Local support groups and community services

4. Supporting patient involvement

Healthwatch works with NHS organisations to include patients and carers in planning and reviewing services.
If you’d like to get involved as a patient representative or share your experience of aspergillosis services, Healthwatch can help you join local working groups or consultations.

5. Spotlighting inequalities

Healthwatch highlights where certain groups are left behind — for example:

  • People with rare or complex conditions

  • Patients in rural or deprived areas

  • Those unable to use digital appointment systems
    This helps ensure people with chronic lung conditions are not overlooked when new community-care models are designed.

⚖️ What Healthwatch can — and can’t — do

✅ Healthwatch can 🚫 Healthwatch can’t
Collect and report your experience to NHS leaders Fix individual clinical problems directly
Influence NHS and council decisions Guarantee faster treatment or appointments
Provide advice on local services and support Replace legal or complaints services
Escalate major safety concerns to the CQC Act as your personal advocate in disputes

Even so, their influence can be powerful — many improvements in NHS access and transport have started with patient stories collected by Healthwatch.

📍 How to contact your local Healthwatch

Every local area has its own Healthwatch website and phone number.
You can find yours at:
👉 Find your local Healthwatch

When you contact them, you can:

  • Fill in a short online form to share your story

  • Ask to join a focus group or consultation

  • Request accessible information or help finding services

  • Subscribe to local updates and reports

If you’d like support from the aspergillosis community, NAC CARES can also help you write or submit your feedback.

💬 Why this matters

“Nothing about us without us.”
Healthwatch exists so that patients — including those with rare and chronic conditions like aspergillosis — can make their experiences count.

By telling your story and feeding back to Healthwatch, you help shape better care for yourself and for others who will face similar challenges in future.

by GAtherton

🌦️ Understanding Corticosteroid Mood Swings

Alison shared something that will resonate with many of us:

“Recognising that prednisone mood swings are very unpredictable is a good reminder as I feel like I am up and down so much of late. Yesterday’s swap to half hydrocortisone and half prednisone probably took a bit of adjusting too. Better day today though — I even got out to pick up my campervan that had been in for service. Felt really good to be driving it again and as the weather improves, I live in hope that I might get to use it this year!” 😊🤔

💭 Why mood can change on corticosteroids

Steroid medicines such as prednisone, prednisolone, and hydrocortisone affect many systems in the body — including brain chemistry.
When levels go up or down (for example when changing dose or type), it’s common to feel:

  • Irritable or anxious one day, low or tired the next

  • More emotional than usual — tears or frustration come quickly

  • Sleep disturbance, vivid dreams, or early waking

  • Short bursts of energy or restlessness, followed by a “crash”

These changes don’t mean you’re “losing control” — they reflect how sensitive the brain is to shifts in cortisol, the hormone steroids replace or supplement.

⚖️ Why switching between steroids can feel bumpy

Prednisone and hydrocortisone are both corticosteroids but have different potencies and timings:

Steroid Approx. equivalent dose (anti-inflammatory) Typical duration of action
Hydrocortisone 20 mg ≈ 5 mg prednisolone Short-acting (6–8 hours)
Prednisone/Prednisolone 5 mg Longer-acting (12–36 hours)

When switching or mixing them, the body’s rhythm of cortisol can temporarily feel off — like jet lag for your stress hormones. It often settles after a few days.

🌞 Tips that may help

  • Keep a simple mood or energy diary — it helps you and your clinician see patterns.

  • Take doses at consistent times, usually in the morning, unless advised otherwise.

  • Build in gentle activity or time outdoors — small wins, like Alison’s campervan trip, really lift mood.

  • Avoid caffeine or alcohol spikes if feeling restless or irritable.

  • Tell your clinician if mood swings are severe or prolonged — dose adjustment or slower tapering may help.

💬 In Alison’s words

“Better day today.”
Sometimes that’s the victory — one step, one better day, one bit of normality returning.

by GAtherton

🌿 Coping with Exhaustion When Tapering Prednisolone

Coming off prednisolone can leave you feeling unusually tired. This happens because:

  • Your body’s own adrenal glands have been “asleep” while steroids did the work.

  • As the dose drops, your body needs time to start making its own cortisol again.

  • Tiredness and low energy are the most common symptoms during this adjustment.

✅ Tips that may help

1. Pace yourself

  • Don’t expect full energy straight away.

  • Break tasks into smaller chunks, with rests in between.

  • Use a “little and often” approach for activities.

2. Prioritise rest and sleep

  • Listen to your body: extra rest is part of recovery, not weakness.

  • Try to keep a regular bedtime routine to support natural hormone rhythms.

3. Gentle movement

  • Light activity (walking, stretching) can actually boost energy and mood.

  • Avoid pushing too hard — overexertion can worsen fatigue.

4. Balanced diet

  • Aim for regular meals with protein, whole grains, fruit/veg.

  • Stay hydrated — dehydration makes fatigue worse.

  • Limit caffeine or sugar “quick fixes” that lead to energy crashes.

5. Monitor stress

  • Emotional stress increases your body’s demand for cortisol.

  • Try calming activities: breathing exercises, mindfulness, or gentle hobbies.

6. Stay in touch with your team

  • If exhaustion is severe, worsening, or you develop dizziness, faintness, low blood pressure, or nausea → contact your doctor urgently.

  • These can be signs your body is struggling with adrenal insufficiency, and your taper may need adjusting.

⚠️ Important reminders

  • Never stop prednisolone suddenly unless your doctor tells you to.

  • Carry a steroid card or alert bracelet if you are tapering — in case of emergencies.

  • If you get unwell (infection, surgery, severe stress), you may temporarily need a higher steroid dose.

👉 Key message:
Tiredness during tapering is very common. Self-care, pacing, and staying in close contact with your healthcare team can help you get through this phase more smoothly.

by GAtherton

🧾 A Patient’s Guide: How to Raise Concerns About Possible Vitamin or Mineral Deficiencies

🌱 Why this matters

People with chronic lung conditions such as aspergillosis, asthma, bronchiectasis, or ABPA often feel fatigued, weak, or run down. Sometimes these symptoms are partly caused by a vitamin or mineral deficiency (e.g. iron, vitamin D, B12). But testing is not automatically offered in the NHS unless there are clear reasons.

Knowing how to raise the concern makes it more likely your GP will take it seriously and order the right tests.

🩺 Why GPs won’t “just run a full panel of tests”

  • Cost and resources: Lab tests are expensive. Panels covering 10+ nutrients aren’t routinely funded.

  • Evidence-based practice: Guidelines (like NICE) advise testing only if there’s a clear clinical reason — not just curiosity.

  • Safety: Too much of certain vitamins (like iron or vitamin D in sarcoidosis) can be harmful if taken unnecessarily.

So rather than asking for “a panel,” it’s best to highlight specific risks or symptoms.

🔍 How to suggest you may have a deficiency

  1. Link to your symptoms

    • Fatigue, pale skin, shortness of breath → ferritin (iron)

    • Muscle weakness, bone pain → vitamin D & calcium

    • Tingling, memory issues → B12 & folate

    • Frequent infections → vitamin D, iron, zinc (though zinc is rarely tested on the NHS)

  2. Refer to your condition or treatment

    • Steroid use: raises risk of osteoporosis → vitamin D & calcium testing often justified.

    • Antifungal medication: can affect liver function & absorption → may influence nutrient status.

    • Sarcoidosis: special caution with vitamin D → specialist testing sometimes needed.

    • Kidney/liver disease: changes how nutrients are processed.

  3. Use guideline evidence

    • NICE, BNFC or patient charities often recommend when a test is justified.

    • Bringing a leaflet (e.g. SarcoidosisUK on vitamin D) can support your case.

  4. Frame it as safety, not curiosity

    • Instead of “I’d like a full vitamin panel,” try:
      “I’ve had ongoing fatigue and a self-test showed my ferritin was low. NICE guidelines mention testing ferritin in these situations. Could we check that?”

🛒 What about over-the-counter (OTC) tests?

You can buy some blood spot kits privately from Boots, Superdrug, or online (Thriva, Medichecks, Forth). These can give helpful information — but they’re not a replacement for GP care.

Test Available OTC? Notes
Ferritin (Iron stores) ✅ Widely available Good first check if you have fatigue or anaemia risk.
Vitamin D (25-hydroxy) ✅ Widely available Most popular; bone/muscle health.
Vitamin B12 / Folate ✅ Available online Useful if you have fatigue, memory issues, neuropathy.
Magnesium, Zinc, Selenium ⚠️ Some private labs only More expensive; less reliable finger-prick accuracy.
Omega-3 index ⚠️ Niche Measures fatty acid balance.
Calcium ❌ Not OTC Needs venous blood in hospital.
Active vitamin D (1,25-dihydroxy) ❌ Not OTC Needed in sarcoidosis; specialist only.

⚠️ Important:

  • OTC kits vary in quality; stick to UKAS-accredited labs.

  • GPs may not act on private results unless they cross NHS thresholds.

  • Self-supplementing without medical oversight can be risky — e.g. iron overload, or vitamin D worsening sarcoidosis.

⚖️ Why this approach matters

  • Helps your GP match your request to clinical guidelines.

  • Reduces the chance of being dismissed as “just worried.”

  • Protects you from the risks of self-supplementing without knowing your true levels.

✅ Key Takeaways

  • Don’t ask for “everything” — focus on the nutrients most relevant to your condition, treatment, and symptoms.

  • Use published guidance or patient resources to back up your request.

  • OTC tests exist for iron, vitamin D, and B12, but they’re not a substitute for GP advice.

  • Testing is about patient safety (avoiding both deficiency and harm from unnecessary supplements).

by GAtherton