**Adrenal Insufficiency & Steroid Tapering:

A Complete Patient Guide**

People taking long-term steroids (prednisolone, methylprednisolone, hydrocortisone, dexamethasone) can develop adrenal insufficiency because their adrenal glands “go to sleep” and stop making cortisol.
During tapering, the body must slowly “wake up” again — and this needs careful monitoring.

This guide explains the symptoms, tests, warning signs, and emergency precautions to keep you safe.


⭐ 1. Why adrenal insufficiency happens

Long-term steroid use suppresses the HPA axis (hypothalamus–pituitary–adrenal system).
When daily steroid doses are reduced, your body must produce more of its own cortisol. This takes time.

If the steroid reduction is too quick, or the body is under stress, low cortisol symptoms appear.


⭐ 2. Symptoms to watch for during steroid tapering

These are early signs that your body may not be keeping up with the reduction.

Early, mild symptoms

  • Fatigue / sudden exhaustion

  • Muscle weakness

  • Dizziness when standing

  • Nausea or reduced appetite

  • Flu-like aching

  • Low mood, anxiety, irritability

  • Brain fog

  • Feeling unusually cold

  • Worsening joint or muscle pain

These often improve if the taper is slowed or paused.


⭐ 3. More serious symptoms of low cortisol

These symptoms suggest steroid levels are too low and the taper needs urgent review:

  • Vomiting

  • Persistent dizziness

  • Very low blood pressure

  • Severe fatigue (unable to function normally)

  • Salt cravings

  • Ongoing nausea preventing eating

  • Faintness or near-collapse

These require medical advice (same day).


⭐ 4. Emergency symptoms — possible adrenal crisis

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

  • Severe vomiting or diarrhoea

  • Collapse or inability to stand

  • Severe dehydration

  • Confusion

  • Sudden severe abdominal or back pain

  • Pale, clammy skin

  • Rapid breathing

  • Loss of consciousness

This is a medical emergency.
Patients normally receive 100 mg hydrocortisone IM/IV, but patients allergic to hydrocortisone require a pre-agreed emergency alternative — your endocrinologist must document this clearly.


⭐ 5. Symptoms that mean you may need a temporary “stress dose” of steroids

Your cortisol requirement increases during physical stress.
If you have adrenal suppression, your body cannot produce this extra cortisol.

You may need a temporary increase in dose if you have:

✔ Illness

  • Fever

  • Chest infection

  • Flu-like illness

  • COVID

  • Urinary infection

  • Gastroenteritis

  • Diarrhoea

  • Persistent nausea

✔ Physical stress

  • Injury

  • Significant fall

  • Severe pain

  • Dental surgery

  • Medical or surgical procedures

✔ Emotional stress

  • Bereavement

  • Panic attacks

  • Trauma

If vomiting prevents taking steroids → seek emergency help immediately.


⭐ 6. Tests used to monitor adrenal function during tapering

Doctors rely on a combination of symptoms and laboratory tests.


Morning cortisol (8–9 am)

A key test to assess recovery.

Typical interpretation:

  • > 400–500 nmol/L → likely normal function

  • 150–350 nmol/L → recovering / borderline

  • < 100 nmol/L → adrenal insufficiency

(Exact thresholds vary.)


ACTH level

Shows whether the pituitary is trying to stimulate the adrenals.

  • Low ACTH → still suppressed

  • High ACTH → trying to wake adrenals

  • Normal ACTH + low cortisol → gland slow to respond


Short Synacthen Test (SST)

Gold standard.
A small ACTH injection tests whether your adrenal glands can produce cortisol.

Used when:

  • taper reaches low doses

  • symptoms appear

  • deciding if steroids can be stopped


Electrolytes (U&Es)

Low cortisol may cause:

  • Low sodium

  • High potassium (less common in steroid-induced insufficiency)


Blood pressure monitoring

Low cortisol → low BP, dizziness, faintness.


Glucose levels

Low-normal glucose and shakiness may occur during withdrawal.


Clinical symptom review

Symptoms are sometimes more sensitive than tests.

Doctors track:

  • fatigue

  • appetite

  • dizziness

  • illness triggers

  • salt cravings

  • mental state

  • recovery after small dose increases


⭐ 7. How tapering decisions are made

Tapering depends on:

  • how long steroids have been taken

  • current dose

  • symptoms

  • test results

  • presence of illness

  • rate at which symptoms develop

  • allergy restrictions (pred/hydrocortisone allergy requires specialist handling)

General principles (not schedules):

  1. Higher doses can reduce more quickly.

  2. Taper slows dramatically near physiological levels
    (~4–6 mg pred-equivalent).

  3. If symptoms appear → pause, slightly increase, or slow taper.

  4. SST is used near the end to confirm recovery.


⭐ 8. When to contact your medical team

Same day advice needed

  • worsening dizziness

  • persistent nausea

  • new vomiting

  • symptoms appear with each taper step

  • fainting

  • new severe fatigue

  • any infection (urinary, chest, flu)

Urgent / A&E

  • collapse

  • severe vomiting/diarrhoea

  • confusion

  • severe abdominal pain

  • unable to take oral steroids

  • suspected adrenal crisis


⭐ 9. What patients should do to stay safe

  • Carry a Steroid Emergency Card at all times

  • Keep emergency instructions from your endocrinologist

  • Know your Sick Day Rules

  • Ensure A&E or ambulance crews know about corticosteroid allergy

  • Keep a written record of tapering plan

  • Never stop steroids suddenly

  • Be cautious during illness

  • Know your emergency steroid plan (alternative if allergic to hydrocortisone)


⭐ Final reassurance

Adrenal insufficiency during tapering is common, manageable, and often reversible.
By monitoring symptoms, using regular blood tests, and following specialist guidance, tapering can be done safely.

You are not alone — your endocrine team will guide every step, especially if allergies (to prednisolone or hydrocortisone) make your case more complex.

With careful observation and a clear emergency plan, serious complications are rare and preventable.


❤️ Thinking About Donating Blood After Aspergillosis or Lung Treatment?

A supportive message for people living with ABPA, CPA, SAFS, and related lung conditions

When you live with aspergillosis or a long-term lung condition, you know what it means to go through difficult treatments, long recoveries, and moments of uncertainty.
So when someone says, “Once I’m well, I’d like to donate blood to help others,” it is an incredibly generous and hopeful act.

Many people in our community wonder whether blood donation is possible after lung surgery, long-term inhalers, antifungals, or biologics. The reassuring answer is:

👉 Yes — some aspergillosis patients can donate blood once fully recovered, but it depends on individual treatments and health status.

And even if you can’t donate, the spirit behind the idea is powerful and meaningful.


🌱 1. Recovery comes first — your health is the priority

Whether you’ve had:

  • ABPA flare-ups

  • CPA treatment

  • bronchoscopy

  • long-term antifungals

  • biologics

  • a lobectomy or wedge resection

…the NHS will want you to be:

  • fully healed

  • breathing comfortably

  • stable in your lung condition

  • free from infection

  • strong enough to safely donate

For major surgery like a lobectomy, this often means several months of recovery before you can even be reviewed for donation.

This protects your health, not just the receiver’s.


💊 2. Medications commonly used for aspergillosis can affect eligibility

NHS Blood and Transplant will look closely at what you’re taking.

Here’s a simple guide:

Often NOT permitted

  • Biologics (e.g., mepolizumab, benralizumab, dupilumab)

  • Long-term immunosuppressants

  • Regular systemic steroids

May require a delay after stopping

  • Itraconazole / voriconazole / posaconazole

  • Recent antibiotic courses

  • Short steroid bursts

Usually fine

  • Inhalers

  • Nebulised saline

  • Montelukast

  • Airway clearance treatments

  • Most pain medicines

Every case is assessed individually — there is no automatic “yes” or “no” for all aspergillosis patients.


🫁 3. Your lung condition does not automatically exclude you

Having ABPA, CPA, bronchiectasis, or SAFS does not automatically prevent blood donation.

What matters is:

  • your condition is stable

  • your oxygen levels are good

  • you are not prone to sudden flare-ups

  • you feel well and strong

Many people with asthma or mild-to-moderate bronchiectasis still donate safely.


🩸 4. Your blood type is always valuable

Whether you’re a universal donor type (O-negative) or any other type, your blood can help save lives.

Even wanting to donate is something to be proud of — especially after everything you’ve been through.


🌟 5. The intention to donate speaks volumes about your strength

People living with aspergillosis know:

  • what it means to struggle for breath

  • how it feels to wait for test results

  • the exhaustion of flare-ups

  • the courage needed for surgery

  • the patience required for long-term treatment

So when someone in this community says:

“If I recover well, I want to donate blood to help someone else.”

…it’s a truly inspiring message of recovery and generosity.


🌈 6. Even if you can’t donate — your kindness still matters

Because of medications or long-term conditions, some people with aspergillosis will be told they can’t donate blood. This is completely normal.

You can still help others by:

  • encouraging friends or family to donate

  • sharing your story to raise awareness

  • supporting patient groups, campaigns, and research

  • simply being there for someone newly diagnosed

Your contribution to the world is not measured by a needle — it’s measured by your compassion.


❤️ Takeaway message

If you want to donate blood after aspergillosis treatment or lung surgery, that’s a beautiful intention. When you’re fully recovered, the NHS can review your health and medications. Whether you can donate or not, the willingness to help others already makes a real difference.


Why Join the Aspergillosis Patient Advisory Group (PAG)?

Supported by the European Lung Foundation (ELF), NAC CARES, and the European Respiratory Society (ERS).

Living with aspergillosis — CPA, ABPA, SAFS, Aspergillus bronchitis or sinus disease — can be overwhelming. Many people feel isolated, struggle to find clear information, or feel unsure how to influence the care they receive.
That is exactly why the Aspergillosis Patient Advisory Group (PAG) exists.

The PAG is supported by the European Lung Foundation (ELF) — based in Sheffield — and by NAC CARES, the patient engagement and support team at the UK National Aspergillosis Centre (NAC) in Manchester. Together, ELF, NAC CARES and the PAG work closely with the European Respiratory Society (ERS) to make sure the patient voice shapes research, education, and clinical practice across Europe and the UK.


What ELF Does

ELF brings together patients, carers, researchers and professionals from across Europe including the UK. It:

  • Provides clear, trustworthy patient information

  • Organises and hosts patient advisory groups

  • Ensures patient voices are included in ERS guidelines and research

  • Supports patient–professional workshops, surveys and consultations

  • Helps patients shape respiratory policy and awareness campaigns

Because ELF is UK-based, participation is easy for UK patients.


What NAC CARES Does

NAC CARES is the patient-facing team at the National Aspergillosis Centre in Manchester.
They:

  • Support UK patients to join the PAG

  • Help connect lived experience from UK clinics to the wider European PAG

  • Share updates, resources, and educational material

  • Bring PAG priorities back into NAC’s clinical and research work

  • Ensure UK patients feel included, represented and supported within ELF and ERS structures

NAC CARES acts as a bridge between UK clinical expertise and European patient involvement.


What the Aspergillosis PAG Does

The PAG ensures that people living with aspergillosis have a direct say in:

  • Research design

  • European Respiratory Society guidelines

  • New diagnostic and treatment pathways

  • Patient-friendly information materials

  • Awareness projects and health campaigns

  • Surveys that drive change in policy and clinical practice

Your lived experience is treated as meaningful expertise.


Why Join the PAG? Why Spend Your Energy?

Many people with aspergillosis have limited energy.
Here is why members say it is worth it:

1. You receive clear, reliable information

Updates on research, antifungals, biologics, trials and guidelines — written for patients, not scientists.

2. Your voice shapes real decisions

ERS guideline committees and research teams listen.
Your input changes how care is delivered.

3. You feel less alone

Aspergillosis is rare.
The PAG connects you with people across Europe and the UK who truly understand.

4. You choose how involved you want to be

You can simply receive updates — or you can complete the occasional survey, join a focus group, or help shape a guideline.
No pressure, no obligation.

5. It improves care for everyone — including you

Your experience helps highlight what really matters:

  • Delayed diagnosis

  • Side-effects

  • Treatment access

  • Fatigue and breathlessness

  • Impact on quality of life

This evidence influences clinicians, researchers and policymakers.

6. It is free, inclusive and easy to join

No travel.
No cost.
All online.
Europe includes the UK, and ELF is based in Sheffield.


Who Can Join?

Anyone affected by aspergillosis:

  • Patients with CPA, ABPA, SAFS, Aspergillus bronchitis or sinus disease

  • People with fungal allergy in asthma or bronchiectasis

  • Family members and carers

No medical background needed.


How to Join

You can join in a few minutes:

👉 https://europeanlung.org/en/patient-advisory-groups/
Choose “Aspergillosis”.

You’ll then receive updates and invitations to take part — always at your own pace.


In One Line:

The PAG gives you good information, a real voice in shaping aspergillosis care, and a supportive community — with full backing from ELF, ERS and NAC CARES.


🌿 Why We All Need to Advocate for Ourselves as the NHS Faces Change and Pressure

A patient-friendly guide to staying safe and getting the care you need

The NHS is going through one of the most challenging periods in its history. Services are under pressure, staff are stretched, and backlogs remain high across nearly every speciality. None of this is the fault of patients or staff — it’s the reality of a system trying to do too much with too little.

In times like this, one thing becomes more important than ever:

Advocating for your own health.

Advocacy simply means speaking up when you need help, asking questions, and making sure your concerns are heard. It’s not about complaining or demanding; it’s about ensuring you get the support, information, and care you deserve.

Here’s why it matters — and how to do it safely and confidently.


🔍 1. Some things no longer happen automatically

With so many clinics running over capacity, routine tasks can be delayed or missed:

  • Follow-up appointments don’t always get booked

  • Test results aren’t always communicated quickly

  • Reviews may slip off the system

  • New medications sometimes aren’t monitored as closely as they should be

This isn’t because your team doesn’t care.
It’s because the system is stretched.

Advocating for yourself helps fill the gaps.


💬 2. Asking questions keeps you safer

If something is unclear — a result, a new medication, a change in symptoms, or a delay — asking for clarification is not only reasonable, it’s sensible.

Good questions to ask:

  • “When should my next review be?”

  • “Who do I contact if I have a problem?”

  • “What symptoms should I watch for?”

  • “Is there a plan for monitoring?”

Healthcare teams want patients to feel informed.
They would rather you ask than worry in silence.


📞 3. The NHS wants patients to raise concerns early

Early contact helps prevent:

  • deteriorations

  • emergency admissions

  • medication complications

  • worsening long-term conditions

Services rely on patients saying, “Something isn’t right.”
It’s an essential part of safe care, not an inconvenience.


🧭 4. The NHS is changing — and patients play a role in shaping care

Integrated Care Systems (ICS), value-based care, and new digital pathways are all evolving.
These changes aim to make care:

  • more personalised

  • more consistent

  • more focused on real outcomes

But during transitions, there are bumps in the road.

Patient feedback — including when something hasn’t worked — helps services identify where improvements are needed.

You are part of shaping that improvement.


❤️ 5. You deserve to be heard

Many patients worry about “bothering” the NHS.
But advocating for yourself is:

  • responsible

  • appropriate

  • encouraged

  • part of keeping long-term conditions well-managed

You are not asking for anything unreasonable.
You are simply making sure your health is looked after.


🌼 6. How to advocate confidently

Here are gentle, effective ways to speak up:

Be clear
“I haven’t had a review since starting this treatment — can we arrange one?”

Be specific
“I’m unsure who to contact if I worsen. Could you give me the correct number?”

Be persistent if needed
“It’s been a few weeks since I asked — could you update me on the appointment?”

Keep records
Dates, names, symptoms, and messages help everything run more smoothly.

Ask for your named clinician or team
Every patient is entitled to know who oversees their care.


🌟 7. You are not alone — and it’s OK to ask for help

Advocacy doesn’t mean you carry the burden alone.
Groups like NAC, patient communities, and charities can help you:

  • understand the system

  • find the right contacts

  • prepare questions

  • know what to expect

  • get support if you’re struggling to be heard

Empowering yourself helps others too — the more patients speak up, the more the system adapts.


💚 In summary

The NHS is still full of dedicated people who care deeply about their patients.
But the reality of high demand and limited capacity means:

We all have to be a little more active in asking for what we need.

Advocating for your own health is:

  • responsible

  • protective

  • empowering

  • part of modern healthcare

It ensures you get the right care at the right time — and it helps the NHS deliver safer, more responsive services.


⚠️ Flu Season Warning: UK Flu Cases Are Now Surging — Dominated by a Drifted H3N2 Strain

The UK flu season has begun much earlier and much faster than usual, and cases are now surging across the country. The UK Health Security Agency (UKHSA) confirms that the dominant strain this year is a drifted influenza A(H3N2) variant (sub-clade K). This strain now accounts for the vast majority of flu cases in people tested.


🔥 Why this flu season is different

  • Almost all flu cases are influenza A, and around 84% of typed cases are H3N2.
    This pattern is consistent across community, GP and hospital surveillance.

  • The H3N2 strain circulating is genetically drifted, meaning it has evolved away somewhat from the reference vaccine strain.
    UKHSA has publicly confirmed this drift.

  • This increases the risk of infection spreading rapidly — which is exactly what is happening now.


🛡️ Does the flu vaccine still work?

Yes — despite the drift, UKHSA reports that the 2025–26 flu vaccine still provides important protection, including:

  • ~70–75% effectiveness in children

  • ~30–40% effectiveness in adults

This means vaccination dramatically reduces severity, even if it does not fully prevent infection.


⚠️ Why this matters for people with lung conditions

If you have:

  • ABPA (Allergic Bronchopulmonary Aspergillosis)

  • Bronchiectasis

  • Asthma

  • Chronic lung disease
    …you are at higher risk of:

  • pneumonia

  • severe chest infections

  • hospitalisation

  • long recovery times

H3N2 seasons are historically worse for adults and people with underlying respiratory disease.


🔺 What you should do now

1. Get vaccinated immediately

If you haven’t had your flu jab yet, do not wait.
The season is already surging and accelerating earlier than usual.

2. Be extremely cautious in high-risk environments

  • Schools

  • Public transport

  • Healthcare settings

  • Large indoor gatherings

  • Poorly ventilated rooms

3. Use winter protection behaviours

  • Ventilate indoor spaces

  • Consider wearing a mask in crowded indoor areas

  • Wash hands frequently

  • Avoid contact with people who are unwell

4. If you become ill — act fast

For anyone with ABPA, bronchiectasis or asthma:

  • A sudden fever

  • A sharp rise in cough

  • Change in sputum

  • Chest tightness

  • Breathing changes

…should be treated as early warning signs.
Contact your GP or respiratory team quickly, as secondary pneumonia is more likely in H3N2 seasons.


Summary

Flu is now surging across the UK, driven by a drifted H3N2 strain, and people with underlying lung disease should take this season particularly seriously.
Vaccination remains strongly protective, but additional precautions are vital during this rapid upswing in cases.


💙 The NHS Is Changing: What “Value-Based Healthcare” Means for People with Aspergillosis

The NHS is beginning to look not just at how many people it treats, but how well those treatments work — and whether every pound spent makes the biggest difference to patients’ lives.
This idea is called value-based healthcare (VBHC).


🧭 What “value” means

In simple terms, value =

Better health and quality of life for patientsthe resources and effort used to achieve it.

It’s not about cutting care.
It’s about making sure time, money, and medicines are used where they bring the greatest benefit — especially for people with long-term or complex conditions like aspergillosis.


⚙️ From “productivity” to “value”

Until now, the NHS has mostly measured productivity — how many people are seen, how many tests or treatments are delivered, and how quickly.

That approach works for short-term or simple care (like hip replacements or cataract surgery), but it doesn’t tell the full story for complex, long-term conditions such as aspergillosis, where the real goal is to stay well, avoid hospital admissions, and maintain a good quality of life.

So, over the next few years, these older productivity measures will gradually be replaced or balanced with value-based measures that ask:

“Did this care actually help patients live better and longer — and was it a good use of NHS resources?”

This means success will be judged more on outcomes and experience than on numbers and speed.


🌿 Why this matters for people with aspergillosis

Aspergillosis, whether Allergic Bronchopulmonary Aspergillosis (ABPA) or Chronic Pulmonary Aspergillosis (CPA), is often complicated and different for every patient.
Traditional NHS targets — such as waiting times or the number of appointments — don’t always show whether patients are breathing easier, feeling stronger, or coping better at home.

Value-based care changes that by focusing on:

  • Real health outcomes – fewer flare-ups, better lung function, reduced fatigue

  • Patient experience – how well care fits your needs, and how supported you feel

  • Sensible use of treatments – balancing benefit, side effects, and cost

  • Joined-up care – making sure specialists, GPs, and community teams work together smoothly


🏥 How the National Aspergillosis Centre (NAC) fits in

The National Aspergillosis Centre (NAC) already works in a value-based way:

  • It tracks outcomes such as infection control, hospital admissions, and steroid use

  • It listens to patients through groups, surveys, and education sessions

  • It combines research, expert treatment, and patient partnership to improve care

  • It shares learning with hospitals across the UK

As the NHS moves further toward value-based care, NAC’s approach — measuring what really matters to patients — is exactly the kind of model the health service wants to grow.


🔄 What might change over the next few years

You may start to notice:

  • More focus on your experience and progress: you might be asked to fill in short questionnaires about symptoms and quality of life (called Patient-Reported Outcome Measures or PROMs).

  • Better coordination between hospital, GP, and community teams — digital health records will help your care stay connected.

  • New measures of success: NAC may report things like “flare-ups prevented” or “improvement in wellbeing” rather than only how many people were seen.

  • More evidence about what works: shared data will help identify which treatments or combinations give the most benefit.


⚠️ What it does not mean

  • It doesn’t mean fewer services or reduced access for people with complex lung disease.

  • Rare conditions like aspergillosis will continue to need specialist national centres because they provide expert care that general services can’t.

  • The goal is to show that centres like NAC deliver high value — preventing complications, reducing hospital stays, and improving lives.


💬 What you can do

  • Give feedback about your health and care — this helps measure real outcomes.

  • Take part in surveys or PROMs if asked — these are how value is proven.

  • Stay involved in patient groups and discussions — your voice helps shape what “value” means for people living with aspergillosis.


🌱 In summary

The NHS is moving from counting treatments to counting outcomes.
For people with aspergillosis, that means care that’s more personalised, joined-up, and focused on what really matters — your health, comfort, and quality of life.

The National Aspergillosis Centre is well placed to lead this change and to show how specialist, patient-centred care can deliver real value for people with complex lung disease.


🌧️ Damp Homes and Aspergillosis: Why This Matters

If you live with aspergillosis, asthma, or other chronic lung conditions, your home environment plays a vital role in how well you stay.
Dampness, mould, and poor ventilation allow fungi — including Aspergillus — to grow and release spores into the air. Breathing in these spores can irritate airways, trigger allergic reactions, or worsen infection risk.

That’s why the NAC CARES team has gathered the latest UK policy, research, and practical guidance on this issue — all now available on our new information hub:
👉 Damp Homes – UK Policy and Research


🏠 What’s New on the Aspergillosis.org Damp Homes Page

Over the past week, the NAC CARES team has published a series of new articles and updates that help you:

1. Understand the Health Risks

  • How damp and mould can worsen breathing symptoms or trigger flare-ups in conditions like Chronic Pulmonary Aspergillosis (CPA) and Allergic Bronchopulmonary Aspergillosis (ABPA).

  • Why people with weakened lungs or immune systems are especially at risk.

  • The hidden signs of mould exposure — condensation, musty odours, or discoloured walls — even when no visible black mould is seen.

2. Learn About Your Rights and What to Do

  • What to check if you rent your home and find damp or mould.

  • Step-by-step guidance on how to report problems, who is responsible for fixing them, and what help is available if landlords or councils don’t act.

  • Links to official UK guidance, including the Awaab’s Law updates, which strengthen tenants’ rights to safe housing.

3. Keep Up with the Latest Research and Policy

  • Summaries of recent UK housing and health studies connecting damp homes to respiratory illness.

  • Insights into national policy changes — including new housing safety standards and public health responses.

  • Easy-to-read summaries of scientific studies showing how mould affects airways and immune response in vulnerable patients.


🧰 How to Use the New Page

  1. Start with the main hub: Damp Homes – UK Policy and Research.
    This gathers all the latest NAC CARES articles, research links, and resources in one place.

  2. Explore by topic:

    • Health & Risk – what damp means for your lungs.

    • Practical Advice – how to spot and deal with mould.

    • Policy & Research – what the UK government and researchers are doing to address the problem.

  3. Take action:
    Use the linked materials when talking with your GP, local council, or housing officer. Having official NHS and government evidence can help you get faster results.


💬 Key Takeaways for Aspergillosis Patients

  • Keep your home dry, warm, and well-ventilated.

  • Report damp or mould promptly to landlords or housing providers — and keep written records.

  • If your symptoms worsen and you suspect environmental triggers, speak with your care team at NAC or your respiratory specialist.

  • Use the NAC CARES Damp Homes page as a trusted, evidence-based guide to understanding your risks and your rights.

 


🧩 NAC Aspergillosis Research Digest Aspergillosis (October 2025: week 43)

Highlights

  • Post‑transplant GVHD & IFI risk: In paediatric liver transplant recipients with GVHD, invasive fungal infection (aspergillosis/candidiasis) was the dominant cause of death; paper advocates PK‑guided monitoring of JAK inhibitors and tacrolimus for safer immunosuppression. (Pediatr Transplant; free full text) PMID: 41039701 | PMCID: PMC12491760
  • Inhaled opelconazole: In‑vitro + clinical data suggest negligible drug–drug interaction (DDI) risk for the investigational inhaled triazole opelconazole, supporting development for pulmonary aspergillosis. (JAC) PMID: 41105437
  • Isavuconazole DDI mapping: PBPK modelling compares isavuconazole with other azoles and proposes model‑informed dosing for anticancer drugs—useful in haem‑onc co‑prescribing. (CPT:PSP) PMID: 41104611
  • CAR‑T fungal infections: Registry analysis after CD19 CAR‑T for B‑cell lymphoma reports invasive aspergillosis as the commonest mould IFI (11/32). (CMI) PMID: 41109429
  • Air pollution & IPA: Two multicentre cohorts link higher fine particulate (PM2.5) exposure before admission with invasive pulmonary aspergillosis in severe pneumonia. (EBioMedicine) PMID: 41106023
  • Mechanisms of resistance/virulence: A bioRxiv preprint identifies a long non‑coding RNA (afu‑182) that modulates triazole susceptibility and virulence in A. fumigatus. (Preprint) PPR: PPR1101933
  • Burden estimates (Poland): National modelling updates burden for IA, CPA, ABPA, SAFS—useful for service planning and advocacy. (Sci Rep; open) PMID: 41087447 | Full text

Diagnostics

  • Dental/ENT interface: In a retrospective implant‑centred series, chronic sinusitis and aspergillosis were histopathologically confirmed in a subset of sinus augmentation candidates; authors discuss when 3D imaging is warranted pre‑procedure. (Int J Oral Maxillofac Implants) PMID: 41105467
  • Environmental surveillance: Post‑hurricane housing study identified Aspergillus spp. in water‑impacted homes, contextualising environmental exposure risk for ABPA/CPA. (Sci Rep; open) PMID: 41087584

Therapeutics & stewardship

  • Opelconazole (inhaled triazole) DDI profile appears favourable (see above). Consider future role for adjunct/targeted lung delivery once efficacy data mature. PMID: 41105437
  • Isavuconazole PBPK‑based recommendations may aid co‑administration with anticancer agents; still requires centre‑specific DDI checks and, where available, TDM. PMID: 41104611
  • Novel antifungal target: A selective acetyl‑CoA synthetase inhibitor shows antifungal activity in Nat Commun—early‑stage discovery but potentially relevant to future azole‑resistant IA/CPA. (Nat Commun; open) PMID: 41087359

Epidemiology & special populations

  • CAR‑T recipients: IA predominance among mould IFIs underscores the need for surveillance, rapid diagnostics (GM/PCR), and early therapy in post‑CAR‑T care pathways. PMID: 41109429
  • Air quality: Association between PM2.5 and IPA suggests including environmental history in risk assessments for severe pneumonia patients. PMID: 41106023
  • Veterinary reservoir: Review from Turkey highlights aspergillosis as a major poultry disease—relevance for occupational exposures and broader One‑Health messaging. (Vet Med Sci; open) PMID: 40988581

Surgery & case‑based learning

  • CPA with infected bulla: Case report supports surgical resection as an option in selected CPA phenotypes with localised disease. (Clin Case Rep; open) PMID: 41103592

Guidance / practice notes

  • For post‑transplant GVHD, ensure PK monitoring (tacrolimus, JAK inhibitors) and early IFI screening (GM/LFA ± PCR) to balance GVHD control against infection risk. PMID: 41039701
  • In CAR‑T and severe pneumonia pathways, include combined diagnostics (BAL GM, Aspergillus PCR ± culture) and rapid initiation of active triazoles where IA is probable.
  • Consider air quality and environmental exposures (post‑disaster housing, poultry) in patient education and prevention.

References & links

  • Sawada K et al. PK Monitoring of JAK Inhibitor and Tacrolimus in post‑LT GVHD. Pediatr Transplant. 2025. PMID: 41039701 | PMCID: PMC12491760
  • Cass LMR et al. Opelconazole DDIs. J Antimicrob Chemother. 2025. PMID: 41105437
  • Goosen TC et al. Isavuconazole DDI PBPK. CPT: Pharmacometrics Syst Pharmacol. 2025. PMID: 41104611
  • Bouvier A et al. IFIs after CD19 CAR‑T. Clin Microbiol Infect. 2025. PMID: 41109429
  • Zhou H et al. PM2.5 & IPA. EBioMedicine. 2025. PMID: 41106023
  • Poudyal NR et al. lncRNA afu‑182 & azole susceptibility. bioRxiv. 2025. Preprint
  • Tamagawa K et al. Lung resection in CPA with infected bulla. Clin Case Rep. 2025. PMID: 41103592
  • Vélez‑Torres LN et al. Aspergillus in water‑impacted homes. Sci Rep. 2025. PMID: 41087584
  • Krzyściak PM et al. Burden of serious mycoses in Poland. Sci Rep. 2025. PMID: 41087447
  • Alhassani ANA et al. Aspergillosis in poultry (Turkey). Vet Med Sci. 2025. PMID: 40988581

 


 Share your feedback about your care at the National Aspergillosis Centre

There’s now a new way to read and share patient feedback about local NHS hospitals online. All comments come directly from patients and carers.
If you’ve been seen by the National Aspergillosis Centre (NAC) at Wythenshawe Hospital and would like to tell us about your experience, please visit the feedback page for North Manchester General Hospital.

That’s because NAC sits within the Infectious Diseases service, which is managed through North Manchester as part of the new Manchester University NHS Foundation Trust (MFT) structure.
You might even be the first person to leave a comment!
We know the route is a little indirect, and we really appreciate you taking the time to share your thoughts — your feedback helps us improve care for everyone.

💬 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.