🫁 Inhaled Amphotericin: What You Need to Know

For patients with CPA, ABPA, and other lung-based fungal conditions

What is Amphotericin B?

Amphotericin B is a powerful antifungal medicine used to treat serious fungal infections, including those affecting the lungs. It is most often given by intravenous (IV) infusion, but in some cases, it can be given through inhalation (nebulisation) to target the lungs more directly.

It may be considered in conditions such as:

  • Chronic Pulmonary Aspergillosis (CPA) – a long-term infection of the lungs caused by Aspergillus fungi

  • Allergic Bronchopulmonary Aspergillosis (ABPA) – an allergic lung reaction to Aspergillus, common in people with asthma or bronchiectasis

  • Fungal infections after lung transplants or in people with severely weakened immune systems

Why Use It Inhaled?

Inhaled amphotericin may be used to:

  • Treat lung-based fungal infections, especially in CPA

  • Help reduce the fungal burden in the lungs of patients with ABPA, when other treatments are not enough

  • Prevent fungal infections in at-risk patients (e.g. those undergoing chemotherapy or organ transplantation)

  • Lower the risk of systemic side effects compared to IV treatment

What Makes Inhaled Amphotericin Challenging?

Amphotericin B can be difficult to inhale because:

  • It doesn’t dissolve easily in water, making it hard to turn into a fine mist.

  • It can irritate the lungs, causing coughing, wheezing, or chest tightness — which is particularly concerning for people with ABPA or asthma.

  • It may not reach all parts of the lung evenly, especially in patients with cavities or damaged lung tissue seen in CPA.

  • There is no licensed, standard inhaled product — it is often used “off-label” under specialist care.

What is Liposomal Amphotericin (Ambisome)?

Ambisome® is a special formulation of amphotericin B. It uses tiny liposomes to deliver the drug.

What is a Liposome?

A liposome is a microscopic, fat-based bubble. It:

  • Protects the medicine until it reaches the right part of the body

  • Reduces irritation and side effects

  • Helps deliver amphotericin more gently to the lungs

You can think of liposomes like tiny protective vans, carrying the medicine where it’s needed most — often areas affected by CPA or ABPA.

Benefits of Inhaled Liposomal Amphotericin

  • Better tolerated than older versions (especially important for people with sensitive airways)

  • Safer for the lungs and kidneys

  • Can be used to target Aspergillus in the lungs directly

  • Suitable for people with CPA or difficult-to-control ABPA

  • May be used alongside antifungal tablets or corticosteroids

What to Expect During Treatment

  • You’ll use a nebuliser, a machine that turns liquid medicine into a fine mist.

  • Treatment usually takes around 15–30 minutes.

  • You may be asked to use a bronchodilator inhaler first (e.g. salbutamol) to open up your airways.

  • Your first treatment may be supervised to check for any side effects.

Common Side Effects

Most people tolerate liposomal amphotericin well, but possible side effects include:

  • Mild coughing or throat irritation

  • Chest tightness or wheezing (more likely with non-liposomal versions)

  • Unpleasant taste or dry mouth

People with ABPA may be more sensitive to these effects due to their underlying allergic response. If you have CPA, it’s important to report any new or worsening symptoms like increased coughing or breathlessness.

by GAtherton

Inhalable Antifungals

Inhalable antifungal medication for Aspergillosis

Inhalable Antifungals

Inhaled antifungals are an area of active development, especially for targeting fungal lung infections like aspergillosis and candidiasis. This approach allows for high local drug concentrations in the lungs while minimizing systemic side effects. Here’s a summary of current and emerging inhaled antifungals:

✅ Currently Available or in Clinical Use (select cases or trials)

Antifungal Formulation Indication / Use Notes
Amphotericin B (liposomal) Inhaled (off-label) Prophylaxis in immunocompromised patients (e.g. post-transplant) Used for inhaled prophylaxis against invasive aspergillosis; available in some UK centres
Voriconazole Inhaled (compounded) Limited use in chronic fungal lung disease Very limited data; some use in compassionate settings
Itraconazole Inhaled (experimental) Chronic pulmonary aspergillosis Inhalable versions have been studied (e.g. PUR1900/Pulmazole)
Nystatin Inhaled (rare/off-label) Oropharyngeal candidiasis or tracheobronchial use Sometimes nebulized in ICU; limited absorption

🧪 In Development / Clinical Trials

Antifungal Developer / Status Target Use Notes
Opelconazole (PC945) Pulmocide Ltd – in Phase 3 trials Inhaled for chronic aspergillosis, prophylaxis Designed specifically for inhalation; long lung retention, minimal systemic exposure
Pulmazole (PUR1900) Pulmatrix (partnering with Cipla) – early trials ABPA, CPA in asthma/bronchiectasis Inhaled itraconazole dry powder; promising lung targeting
Inhaled amphotericin B lipid complex Aridis / others Invasive fungal prophylaxis Advanced animal and some early human data
Encochleated Amphotericin B Matinas BioPharma (oral/inhaled being explored) Aspergillosis, mucormycosis Cochleate delivery protects drug; inhaled route under study

🔬 Preclinical / Exploratory

Antifungal Class Notes
Echinocandins (e.g. caspofungin) Not yet available in inhaled form, but being explored for nebulization
Azole reformulations Research ongoing into nebulized posaconazole or isavuconazole for direct lung delivery
Novel agents (e.g. olorofim) Olorofim is oral/IV only currently, but inhaled versions could emerge in future studies

🧩 Potential Advantages of Inhaled Antifungals

  • High concentration directly at the site of infection (lungs)

  • Reduced systemic toxicity

  • Less interaction with hepatic CYP450 pathways (important for azoles)

  • Better for long-term suppression in CPA, ABPA, SAFS

🚧 Challenges

  • Delivery devices and patient technique (e.g. DPI vs nebuliser)

  • Ensuring adequate deposition in damaged or obstructed airways

  • Regulatory hurdles due to novel delivery routes

  • Limited real-world data so far

by GAtherton

Climate Change: What it Means for People with Aspergillosis.

The recent study here in Manchester and elsewhere suggested that as the climate warms, there is evidence that fungal pathogens will be able to set up home in new areas of the world, increasing the risk of, eg, aspergillosis. Naturally, there has been some alarm at this news from current aspergillosis patients. Are they more at risk and what can be done to protect them?

🌍 Climate Change and Fungal Risk in the UK: What You Need to Know

The study looked at how fungal pathogens like Aspergillus fumigatus may spread over the next 70 years due to climate change. While this sounds alarming, let’s break it down — especially in terms of what it means for those of us in the UK with ABPA, asthma, CPA, or bronchiectasis.

✅ Key Facts

  • Aspergillus fumigatus is already widespread in the UK — in compost, garden soil, air, and dust.

  • The study doesn’t mean the UK will suddenly become “at risk” — rather, the risk may increase due to warmer, drier weather allowing spores to thrive for more of the year.

  • It’s about slow change over decades, not sudden danger.

🌦️ What Might Happen in the UK?

  • More months per year with high airborne spore levels

  • Higher overall concentrations of spores during dry, hot periods

  • Wider spread of antifungal resistance, already being found in urban soil and compost

💚 What We’re Already Doing to Stay Safe

Many in our community are already taking excellent steps to reduce risk, and these are even more important going forward:

🛡️ Wear an FFP2/FFP3 mask when gardening, composting, or in dusty environments
🌬️ Use HEPA air purifiers indoors
🚿 Shower and change clothes after outdoor work
🌡️ Track weather conditions – avoid dusty or windy days when spores are highest
🧪 Ask your doctor about resistance testing if symptoms flare up

🌱 We Can Also Make a Difference

While these changes are long-term, they remind us how connected our health is to our environment. By supporting efforts to cut emissions and reduce global warming, we can help limit the spread of harmful fungi for ourselves and future generations.

If you're seeking reliable resources on current UK efforts to combat climate change, here are some key organisations and initiatives:

🇬🇧 UK Government Initiatives

  • Net Zero by 2050: The UK has a legally binding commitment to achieve net-zero greenhouse gas emissions by 2050. Interim targets include a 68% reduction by 2030 and an 81% reduction by 2035, compared to 1990 levels. Le Monde.fr

  • Department for Energy Security and Net Zero (DESNZ): This department oversees the UK's energy policy and climate change initiatives, including the implementation of the Net Zero Strategy. Wikipedia

  • Public Building Energy Upgrades: The UK government has announced a £630 million investment to improve energy efficiency in public buildings, such as schools and hospitals, by installing solar panels and heat pumps. Reuters

🧭 Independent Oversight and Analysis

  • Climate Change Committee (CCC): An independent body that advises the UK government on emissions targets and reports on progress. The CCC monitors the UK's adaptation to climate change and provides policy recommendations. London.gov.uk

  • UK Parliament Research Briefings: Provides detailed analyses of the UK's climate policies, progress towards net-zero, and sector-specific strategies. House of Commons Library

🌿 Non-Governmental Organizations

  • Greenpeace UK: Offers insights into the UK's climate actions and advocates for stronger environmental policies.

  • Energy Saving Trust: Provides advice and support for individuals and organizations to reduce energy consumption and carbon emissions, including information on grants and energy-saving technologies. Wikipedia

  • UK Green Building Council (UKGBC): Focuses on reducing carbon emissions in the built environment and promotes sustainable construction practices. UKGBC

🏙️ Local and Regional Initiatives

  • Greater London Authority's Climate Action Plan: Outlines strategies for London to become a zero-carbon city, including measures across energy, transport, and waste sectors. London.gov.uk

  • Zero Carbon Manchester Manchester.gov.uk

These resources offer comprehensive information on the UK's multifaceted approach to addressing climate change.

by GAtherton

Warning that Climate Change is helping Fungal Pathogens to Spread

A recent study, led by Dr. Norman van Rhijn of the University of Manchester, warns that climate change is accelerating the spread of dangerous fungi, particularly Aspergillus species, across Europe and beyond. The research, funded by the Wellcome Trust, highlights how rising temperatures and environmental changes are enabling these fungi to thrive in new regions, posing significant health and food security risks. The Times

🔬 Key Findings:

  • Aspergillus fumigatus: Projected to expand its range by 77% by 2100, potentially exposing an additional 9 million people in Europe to infection.

  • Aspergillus flavus: Expected to increase its territory by 16%, affecting around 1 million more individuals. This species produces aflatoxins, toxins that can contaminate crops and are linked to liver cancer.

🧠 Health Implications:

Inhalation of Aspergillus spores can lead to aspergillosis, a serious lung infection that may spread to other organs. While healthy individuals are often unaffected, those with compromised immune systems, asthma, or cystic fibrosis are at heightened risk. The World Health Organisation has identified Aspergillus fumigatus as one of the top four dangerous fungal pathogens. The Irish Sun

🌍 Environmental and Agricultural Impact:

Aspergillus flavus poses a threat to global food supplies by producing aflatoxins that contaminate crops. Higher temperatures and CO₂ levels can boost the toxin's production, exacerbating the risk to food security. The Irish Sun

🧪 Call to Action:

Experts emphasise the urgent need for increased research, improved diagnostics, and the development of effective antifungal treatments to mitigate the growing threat posed by these fungi. The Wellcome Trust is allocating over £50 million to fungal research in the coming year to better prepare for future challenges. The Times

This study underscores the broader impact of climate change on public health and food security, highlighting the urgency for global mitigation efforts.

by GAtherton

🌿 Tezepelumab (Tezspire) and ABPA: What You Need to Know

If you’ve been living with ABPA and find your symptoms keep coming back despite steroids and antifungal treatment, your consultant may suggest a biologic (monoclonal antibody). One of the newer options being offered to some patients in the UK is Tezepelumab, brand name Tezspire.

💡 What is Tezepelumab?

Tezepelumab is a biologic injection that targets a molecule called TSLP (thymic stromal lymphopoietin). TSLP is an early trigger in the chain reaction that leads to inflammation in the lungs. By blocking it, Tezepelumab can calm multiple allergic and eosinophilic pathways, which makes it different from most other biologics that only block one type of inflammation.

✅ Who Might Be Offered Tezepelumab?

Tezepelumab is approved by NICE for use in the NHS in people aged 12+ with severe asthma, especially those who:

  • Are on high-dose inhaled steroids and still struggling

  • Have had 3+ asthma flare-ups in the last year, or

  • Need to take regular oral steroids

If you have both ABPA and severe asthma, you might be offered Tezepelumab—even though it isn’t specifically licensed for ABPA.

🔍 How Does It Compare to Other Biologics?

Here’s a quick comparison:

Biologic Name Target NHS Use Needs High IgE or Eosinophils?
Omalizumab IgE Severe allergic asthma ✅ Yes – High IgE needed
Mepolizumab IL-5 Eosinophilic asthma ✅ Yes – High eosinophils needed
Benralizumab IL-5 receptor Eosinophilic asthma ✅ Yes
Dupilumab IL-4/13 Allergic asthma ❌ No, but usually allergy-type
Tezepelumab TSLP (upstream) Severe asthma (NICE-approved) ❌ No – works across all types

🧠 Why this matters: If your IgE or eosinophil levels aren’t high, Tezepelumab may still work for you—even when other biologics aren't suitable.

💷 Is Tezepelumab Expensive?

Yes—but it's funded on the NHS for patients who meet NICE criteria.

  • List price: ~£1,265 per injection (monthly)

  • NHS pays less through a confidential discount agreement

  • It’s not necessarily cheaper than other biologics, but it offers wider eligibility and broad activity

⚖️ Is It Better Than Other Biologics?

It depends. Some patients respond well to older biologics like omalizumab or mepolizumab, especially if their ABPA overlaps with allergy or eosinophilic asthma. But Tezepelumab may be a better fit if:

  • You don’t qualify for the others (e.g. your IgE is too low)

  • You’ve tried other biologics and they didn’t help enough

  • Your ABPA overlaps with hard-to-control asthma

While Tezepelumab isn’t licensed specifically for ABPA, its upstream targeting may help reduce flare-ups in those with overlapping conditions.

💉 Side Effects

Most people tolerate Tezepelumab well. Possible side effects include:

  • Injection site reactions (redness, swelling)

  • Headache or sore throat

  • Allergic reaction (rare)

It's given by subcutaneous injection once a month, often at hospital initially, but home administration may be an option later on.

👩‍⚕️ What to Ask Your Consultant

  • Why are you recommending this biologic for me?

  • Will it help with both my ABPA and asthma?

  • How soon should I expect results?

  • Can I stop steroids if this works?

Keeping a symptom diary and reporting back is really useful to your team.

🧾 Summary

Question Tezepelumab (Tezspire) Answer
Licensed for ABPA? ❌ No, but used off-label when asthma overlaps
Approved for NHS use? ✅ Yes – via NICE for severe asthma
IgE or eosinophils needed? ❌ No
Dose/frequency Monthly injection
Broad anti-inflammatory effect? ✅ Yes – acts early in the pathway

Tezepelumab is opening new doors for people with ABPA and severe asthma who’ve struggled with flare-ups, steroid side effects, or biologics that didn’t work. It’s not for everyone, but it’s worth a conversation with your specialist.

by GAtherton

🧬 Biologic Treatments for ABPA (Allergic Bronchopulmonary Aspergillosis)

Many people with ABPA who continue to experience flare-ups despite steroids and antifungals are now being offered biological therapies—also known as monoclonal antibodies.

These treatments target specific parts of the immune system involved in allergic inflammation. They're often used when:

  • Steroids are needed frequently or at high doses

  • Antifungals alone aren’t enough

  • ABPA keeps recurring and affecting quality of life

💉 Biologics Currently Used in ABPA

The following biologics are being used in the UK, particularly in specialist centres and often in patients with ABPA plus severe asthma or eosinophilic disease:

Biologic Name Target Brand Name Notes
Omalizumab IgE Xolair Most commonly used; good for high IgE and allergic asthma
Mepolizumab IL-5 Nucala For eosinophilic inflammation; steroid-sparing
Benralizumab IL-5 receptor (IL-5Rα) Fasenra Rapidly reduces eosinophils; monthly or 8-weekly injection
Dupilumab IL-4 and IL-13 Dupixent Used in allergic-type asthma and some ABPA patients
Reslizumab IL-5 Cinqaero IV infusion; less commonly used in ABPA
Tezepelumab TSLP (upstream cytokine) Tezspire Newest option; blocks multiple inflammatory pathways; doesn’t require high IgE or eosinophils

👉 Note: No biologic is officially licensed specifically for ABPA, but many are used off-label in patients with overlapping severe asthma or allergic disease.

✅ What Do Patients Say?

Many people treated with biologics report:

  • Fewer flare-ups or “chest infections”

  • Less need for oral steroids

  • Clearer breathing, less coughing, and better energy

Not everyone responds, but many see significant improvement in control and quality of life.

⚠️ Side Effects

Biologics are generally well-tolerated. Possible side effects include:

  • Mild injection site reactions (redness, swelling)

  • Headaches or fatigue

  • Allergic reactions (rare)

They’re usually given every 2–8 weeks as an injection under the skin, sometimes in hospital at first and then possibly at home.

🩺 What to Ask Your Consultant

  • Why have you chosen this biologic for me?

  • Will it help my asthma as well as ABPA?

  • How soon will I know if it’s working?

  • Will I still need antifungals or steroids?

  • Are there any alternatives if this one doesn’t work?

📌 Summary

Key Point Biologics in ABPA
Used when Steroids aren’t enough or cause side effects
Most used Omalizumab, Mepolizumab, Tezepelumab
Goals Reduce flares, improve breathing, lower steroid use
Licensed for ABPA? ❌ No – but used off-label in many UK centres
NHS funding? ✅ Yes – when criteria for severe asthma are met

by GAtherton

Could You Help Transform the Future of CPA Treatment?

Join the INCAS Trial at the National Aspergillosis Centre

If you’ve recently been diagnosed with chronic pulmonary aspergillosis (CPA) and are starting antifungal treatment, you may be eligible to take part in a pioneering clinical trial that could shape the future of care. If that is the case we will approach you to ask if you would like to join.

CPA is a long-term lung infection caused by the fungus Aspergillus, often in people with conditions like COPD or previous tuberculosis. It leads to progressive lung damage, frequent infections, and significant impact on quality of life. Current antifungal treatments help only about 60% of patients, and many face relapses, side effects, and long-term medication use.

The INCAS trial is testing whether adding a naturally occurring immune protein called interferon-gamma to standard antifungal therapy can lead to better outcomes — fewer infections, less lung damage, and improved day-to-day wellbeing. Interferon-gamma is already used safely in the NHS for other conditions, and early research at the National Aspergillosis Centre (NAC) has shown promising results for CPA.

What Is Involved?

If you choose to take part:

  • You’ll continue with standard antifungal treatment

  • You may be randomly assigned to receive interferon-gamma injections for 12 weeks (3 injections per week)

  • You’ll receive regular follow-up with chest scans, symptom tracking, and support from our expert team

All patients are closely monitored to ensure safety and comfort throughout the trial.

What Have Previous Participants Said?

Patients who took part in earlier studies shared their experiences with honesty and encouragement:

“They are missing a great opportunity… I certainly didn’t want to inject, but I need to be well, and this was a good chance at fewer infections and damping down the Aspergillus.”

“I only had one bad day — I phoned the NAC nurses, who reassured me it was expected and to carry on. Now, side effects are mild and usually gone by lunchtime. They don’t stop me like the chest problems used to.”

“I would really encourage patients to seize this chance of having gamma interferon.”

Others mentioned they were concerned at first about injections or travel, but found ways to manage:

“It doesn’t always hurt — yellow paediatric needles are the key, and a bit of tummy fat helps. Legs rarely hurt.”
“Travel’s harder now that my husband has trouble with his sight… but I understand the issue and can empathise.”

Is It Safe? What About Side Effects?

In our previous study, interferon-gamma was generally well tolerated. Some patients had mild flu-like symptoms after the injection, but these usually faded with time and were far less disruptive than a flare of CPA itself. Your care team will work closely with you and adjust support as needed.

This trial is all about learning more — not only about effectiveness, but also how easy and acceptable the treatment is for patients. The insights we gain will help shape a larger trial and may eventually transform the standard of care for CPA.

Why Take Part?

CPA affects around 3,600 people in the UK, with mortality as high as 40% within five years. If interferon-gamma proves successful, it could:

  • Shorten treatment durations

  • Reduce relapses

  • Improve quality of life for you and others

  • Open the door for better treatments in other chronic lung diseases too

You won’t just receive expert support from the UK’s leading CPA centre — you’ll help build the future of care.

“I wouldn’t be influenced by being paid. I’d be more concerned about safety and careful monitoring – which I got.”

🔗 Learn more at clinicaltrials.gov/NCT05653193 or speak to your team at the National Aspergillosis Centre.

You could be part of something that changes CPA care for good.

by GAtherton

Understanding How Our Lungs Fight Fungus

Airway epithelial cells (AECs) are a key component of the human respiratory system: The first line of defence against airborne pathogens such as Aspergillus fumigatus (Af), AECs play a crucial role in initiating host defence and controlling immune responses and are important in maintaining respiratory health and preventing infections that can lead to conditions such as aspergillosis. Research by the University of Manchester’s Dr Margherita Bertuzzi and her team sought to understand how AECs combat Af and what leads to vulnerabilities in these defences, particularly in individuals with underlying health conditions. 

Previous work by Dr Bertuzzi and her team demonstrated that AECs are effective in stopping the fungus from causing harm when they are functioning well. However, in people who are at higher risk, like those with weakened immune systems or existing lung conditions, if these cells are not working correctly, the fungus can take advantage of this situation.

This new research by Dr Bertuzzi and her team aimed to explore how AECs stop the fungus in healthy people and what goes wrong in people who get sick. The team looked closely at the interaction between the fungus and lung cells from both healthy individuals and those with certain diseases. Using advanced scientific methods, the team was able to observe the interactions between the lung cells and the fungus at a very detailed level.

What They Found 

Experiments showed that the stage of fungal growth was important and a surface carbohydrate – mannose (a sugar) also had a role in the process.

Specifically, they discovered that the fungus is more likely to be taken up by lung cells when it has been growing for a few hours compared to when it’s just a fresh spore. Swollen fungal spores that were locked at 3 and 6 hours of germination were 2-fold more readily internalised than those locked at 0 hours. They also identified that a sugar molecule called mannose on the surface of the fungus plays a big role in this process. 

Mannose is a type of sugar molecule that can be found on the surface of various cells, including those of pathogens like Aspergillus fumigatus. This sugar plays an important role in the interactions between the fungus and the host’s cells, particularly the AECs lining the lungs. In a healthy immune response, mannose on the surface of pathogens can be recognised by mannose receptors on immune cells, triggering a series of immune responses aimed at eliminating the pathogen. However, Aspergillus fumigatus has evolved to exploit this interaction, allowing it to adhere to and invade lung cells more effectively. The presence of mannose on the fungus’ surface facilitates its binding to mannose-binding lectins (MBLs) (proteins that bind specifically to mannose) on the surface of lung cells. This binding can promote the internalisation of the fungus into the lung cells, where it can reside and potentially cause infection.

The research highlighted the possibility of manipulating this interaction as a means to combat fungal infections. By adding mannose or mannose-binding lectins like Concanavalin A, researchers could significantly reduce the fungus’s ability to invade lung cells. This reduction was accomplished by essentially “competing” with the fungus for the binding sites on the lung cells or by directly blocking the fungal mannose, thereby inhibiting the interaction that facilitates fungal infection.

Why does it matter?

Understanding these interactions gives us important insights into how our lungs protect us from fungal infections and what goes wrong in people who are vulnerable to such infections. This knowledge could help in creating new treatments against pathogens like Aspergillus fumigatus.

You can read the full abstract here. 

by Lauren Amphlett

Patient Reflection on Research: The Bronchiectasis Exacerbation Diary

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Navigating the rollercoaster of chronic illness is a unique and often isolating experience. It is a journey that can be filled with uncertainties, regular hospital appointments, and a never-ending quest for a return to normal. This is so often the reality for individuals with chronic respiratory diseases, such as aspergillosis. 

In this post,  Evelyn embarks on a reflective journey, chronicling the evolution of her illness from childhood diagnosis to the present day, a timeline characterised by bilateral severe cystic bronchiectasis complicated by the colonisation of aspergillus and the less common scedosporium. For Evelyn, keeping a diary, noting symptoms, infections, and treatment strategies has been a way to make sense of the unpredictability of her health. This habit, instilled years ago by a forward-thinking consultant, transcends its practical utility, evolving into a critical tool for patient empowerment and self-advocacy.

When searching the web for help refining her symptom diary, Evelyn came across a paper titled: The Bronchiectasis Exacerbation Diary. This paper  was a revelation of sorts. It cast light on often-overlooked aspects of the patient-experience and validated the often inexplicable symptoms that Evelyn experiences. It is evidence as to the power of patient-centered research and the impact of seeing lived experience  acknowledged in scientific literature. 

Evelyn's below reflection is a reminder of the broader implications of chronic illness on daily life and the need to adapt to navigate daily life. 

As a result of a conversation with Lauren recently concerning the use of a symptom diary/journal, I came across a paper published on the internet, ‘The Bronchiectasis Exacerbation Diary’. Diagnosed in childhood with a chronic respiratory disease which has progressed throughout my life, I have bilateral severe cystic bronchiectasis with colonisation of aspergillus and the rarer fungi, scedosporium.

I have long been accustomed to keeping notes of symptoms/infections/treatment, having been encouraged to do so, many years ago, by a consultant for ease of reference at appointments.  He emphasised treating infections should be dependent on the result of a sputum culture and sensitivity and not on a “Russian roulette” approach, as he called broad spectrum antibiotics; without knowing what type of infection was involved.  Thankfully, my GP was co-operative, as at that time cultures were not routine.  (I had dreaded acquiring a reputation as a bolshie patient!)

Reading the above mentioned paper was a revelation.  It brought together the range of symptoms I experience daily, even some symptoms I felt were not appropriate to mention at clinic consultations.  Moreover, I felt validated.

There have been occasions, albeit rarely, when I have doubted myself, none more so than when one clinician inferred I was psychosomatic.  This was my lowest point.  Thankfully, following this I was referred to a respiratory physician at Wythenshawe Hospital who, when a culture showed aspergillus, transferred me to Professor Denning’s care; as they say “every cloud has a silver lining”.  Aspergillus had previously been found in a culture at another hospital in 1995/6, but not treated in the way it was at Wythenshawe.

Not only everyday symptoms were considered in the article, but also the immediate impact patients’ experience with daily living.  Also, in a wider sense, the general impacts on our lives and the adjustments we all face in coping – all of which I can so easily identify with in my own life.

I felt so encouraged reading the paper as despite all of the various types of patient information leaflets I have read through the years, none were so comprehensive.  

 

 

 

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by Lauren Amphlett

Do you have asthma and Allergic Bronchopulmonary Aspergillosis?

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We're excited to share that there's a new clinical study that's looking into an innovative treatment specifically for individuals dealing with both asthma and ABPA. This treatment comes in the form of an inhaler called PUR1900.

What is PUR1900?

PUR1900 is an inhaled medication that's being tested for its effectiveness against the symptoms of ABPA in asthma patients. It’s designed to deliver an antifungal medication directly to the lungs, where it can work right at the source of the problem.

The Study at a Glance

The study spans several months and is divided into three key phases:

  1. Screening Period (28 days): Researchers will do some tests to make sure this study is the right fit for you.
  2. Treatment Period (112 days): If you're eligible, you'll use the inhaler for about 16 weeks. You could receive either a higher dose, a lower dose of PUR1900, or a placebo (which doesn't contain the actual medication).
  3. Observation Period (56 days): After the treatment, researchers will keep an eye on your health for another 8 weeks.

What Will Participants Do?

  • Daily Routines: You'll use the inhaler daily as directed and keep track of your experience in an electronic diary (eDiary).
  • At-Home Checks: You'll measure your breathing strength daily using a simple device.
  • Clinic Visits: Approximately once a month, you'll visit the clinic for check-ups and tests.

Why Participate?

By joining this study, you're not only potentially finding a new way to manage your asthma and ABPA, but you're also contributing to medical research that could help countless others in the future.

Safety and Benefits

Your safety is the top priority. You'll be closely monitored throughout the study, and all treatments will be provided at no cost to you. Plus, if you successfully complete the study, there may be an opportunity to continue receiving PUR1900 in a follow-up study.

Taking the Next Step

Researchers are looking for adults with asthma and ABPA who are interested in exploring this new treatment option. If you're ready to take the next step, eligibility and contact details on how you can participate in this groundbreaking study can be found by clicking here.

 

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by Lauren Amphlett