Developments in Biologic and Inhaled Antifungal medications for ABPA

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ABPA (Allergic Bronchopulmonary Aspergillosis) is a serious allergic disease caused by a fungal infection of the airways. People with ABPA usually have severe asthma and frequent flare-ups that often require long-term use of oral steroids and antibiotics to treat secondary bacterial infections.

The two main treatments for ABPA are antifungal medication and oral steroids. Antifungal medication work by targeting the fungi causing the infection, limiting its growth and spread. This can help reduce the frequency of flare-ups and stabilize the condition but may also cause side effects such as nausea and, more rarely, liver damage. Oral steroids work by reducing inflammation and suppressing the immune system's response to the allergen, which can help control the symptoms of ABPA. However, long-term use can cause significant side effects, including weight gain, mood swings, and adrenal insufficiency.

These side effects can greatly impact quality of life, but both treatments may be necessary to prevent the disease from worsening. Therefore, new or improved treatments are needed.
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Fortunately, there have been recent developments in managing ABPA, and a review by Richard Moss (2023) highlights two promising types of treatment:

 

  1. Inhaled antifungal medication treat fungal lung infections by delivering the drug directly to the site of infection. This allows for a higher concentration of the drug to be delivered to the affected area while limiting the exposure of the rest of the body and therefore reduces side effects. For instance, inhaled itraconazole has been shown to reach concentrations high enough to kill or inhibit fungus growth. Further trials will be completed this year (2023) to assess its safety and effectiveness. Although still in development, these drugs offer hope for more effective and better-tolerated treatment options for patients with ABPA.
  1. Biologic medication is a completely new type of treatment that uses synthetic antibodies to target specific cells or proteins of our immune system instead of using a chemical compound. Omalizumab, a type of biologic, binds to immunoglobulin IgE and deactivates it. IgE is involved in the allergic response our bodies launch against foreign invaders and plays a big role in ABPA symptoms. Deactivation of IgE has been shown to reduce allergic symptoms. In clinical trials omalizumab has been shown to significantly (a) reduced the number of flare-ups compared to pre-treatment, (b) reduced the need for oral steroid use and lowered its necessary dose, (c) increased wean off steroids, (d) improved lung function and (e) improved asthma control. Additionally, other Monoclonal antibodies (Mabs) such as mepolizumab, benralizumab, and dupilumab have shown a reduction in flare-ups, total IgE and a steroid-sparing effect.

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According to Moss (2023), these new treatment approaches are highly effective in reducing hospital visits. Biologics seem highly effective, with up to a 90% reduction in flare-ups for ABPA patients and up to 98% efficacy in reducing the amount of oral steroid needed by the patient. If these new treatments continue to work well, it could potentially offer a new, higher quality of life for individuals with ABPA . Overall, these findings are promising, but further research is needed to confirm the effectiveness of these treatments specifically for ABPA.

Original paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9861760/ 

 
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Spring COVID Booster

COVID-19 levels of infection in the UK are far lower than they have been earlier in the pandemic, even while most people have returned to taking fewer precautions against infection. Increased immunity in the UK population caused by vaccination and infection has likely brought us to this better place.

However levels of immunity are not fixed and much like the common cold it gradually declines in each of us, leaving us open to re-infection within a year. Consequently, we must keep 'topping up' immunity in order to avoid severe symptoms should we be infected. For most of us that are now likely to be a natural process of periodic re-infection until the virus stops circulating so widely.

If you are in a highly vulnerable group it is safest to top-up your immunity without being infected by having a booster vaccination. The Uk government will launch a spring booster campaign shortly to address this need.

Those who will be offered this booster will only be the most at risk, so you may or may not be offered it depending on the opinion of your local hospital doctor or GP. The criteria for the spring booster seem to be more restricted than earlier boosters and will only be offered 6 months after your last booster.

Criteria for the spring campaign are:

  • adults aged 75 years and over
  • residents in a care home for older adults
  • individuals aged 5 years and over who are immunosuppressed (Your doctor will get guidelines to decide this for you)

There will likely be a less restricted booster jab in autumn 2023 too.


NAC CARES Virtual Challenge - 418.5 miles (673.54km down)

The NAC CARES Team are 30 days into their 100-day challenge to travel the length of the UK from Land End to John O' Groats (LEJOG). The last 30 days have seen the team run, cycle and walk to rack up the miles for the 1,084 mile (1,743km) challenge.

The team is outside Coventry and virtually passed through many well-known landmarks, including Stratford-Upon-Avon, The Royal Shakespeare Company Theatre, Oxford and Kenilworth Castle. The beauty of a virtual challenge is that even with the impending cold weather forecast, the team can still check off the miles on treadmills and indoor bikes so, in the words of a Disney Princess, let it snow!

The work of the Fungal Infection Trust (FIT) improves awareness, treatment and outcomes for all those affected by fungal disease. FIT is a small charity who have, over the years, supported the work of the NAC CARES Team, allowing them to maintain their unique work. Every pound raised will help the Trust continue to help people around the world. You can read more about their work here.

To donate, visit here.


Accessing GP services

Changes to GP contracts for 2023/2024 mean patients should be able to access appointments without enduring the 8am scramble and subsequent telephone queue we are all so very used to. 

The new GP contract was published on Monday, 6 March by NHS England and will be in place from next month. The change is part of NHS England's goal to ensure equitable and consistent patient access. The contract states that: 

'Patients should be offered an assessment of need, or signposted to an appropriate service, at first contact with the practice. Practices will therefore no longer be able to request that patients contact the practice at a later time.'

While the contract's wording does not elaborate on an appropriate service, this will likely mean telephone and in-person appointments, referral to pharmacists for minor illnesses, physiotherapists for muscular skeletal issues, or Accident and Emergency Departments for more urgent health concerns.

The contract change will ensure patients can access timely and appropriate care, but it will no doubt take time for practices to implement the changes. 


NAC CARES Virtual Challenge - Week 2

The NAC CARES Team are seventeen days into their virtual Lands End To John O'Groats (LEJOG) challenge, and this last week has seen them cover a further 65.86 miles (106.1km). This means the team have covered a total of 227.29 miles (365.80km), equating to 1/5 of the total distance.

This week's miles were dedicated to aspergillosis patient Ian Stratton, an avid runner with Brackla Harriers who recently passed away.

This week's collective effort has again been achieved with team walks, trail, road and treadmill running, and more long hours on static bikes. This week's virtual landmark was the stunning Durdle Door, a natural limestone arch on the Jurassic Coast near Lulworth in Dorset, England. 

 

 

The virtual challenge, which the team began on World Aspergillosis Day 2023 (February 1st), covers the length of the UK and will see the team run, cycle and walk a total of 1,084 miles (1,743km). 

The goal is to complete the distance in 100 days and to raise just £1 for every km travelled.

If you would like to read more about the Fungal Infection Trust (FIT), which the team are fundraising for, and donate, then follow the link https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis


NAC CARES Virtual Challenge - Week 1

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It has been ten days since the NAC CARES Team embarked on their virtual Lands End To John O'Groats (LEJOG) challenge. The virtual challenge, which the team began on World Aspergillosis Day 2023 (February 1st), covers the length of the UK and will see the team run, cycle and walk a total of 1,084 miles (1,743km). 

The goal is to complete the distance in 100 days and to raise just £1 for every km travelled.

The first ten days have already seen the team cover 14% of the distance; that is 161.4 miles (259.70km), and they are ahead of schedule by a whopping 68.48 miles (110.2km)! The collective effort has been achieved with walks, running, and long hours on static bikes and treadmills. Check out some of the areas we have passed below, and let us know if you live nearby!

The team will be dedicating the next week of miles and km to aspergillosis patient Ian Stratton, an avid runner with Brackla Harriers who recently passed away.

If you would like to read more about the Fungal Infection Trust (FIT) which the team are fundraising for, and donate, then follow the link https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

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NAC CARES team charity run for the Fungal Infection Trust

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The Fungal Infection Trust (FIT) provides vital support for the work of the CARES team, without which it would be much more difficult to maintain their unique work.

This year, starting on World Aspergillosis Day 2023 (1st Feb) the CARES team is paying back some of that support to FIT.

The Team (Graham/Lauren/Chris/Beth and Seren) have taken on the challenge of getting from one end of the UK to the other with only the power of our legs in 98 days. There are five in the team: two runners, a cyclist and two walkers. We would all normally cover a few km a day so together we think we can cover the 18km A DAY needed to complete this challenge without too many blisters!

With your help we would like to raise £1 a km for the whole journey, so when we are passing your part of the UK (virtually, as we can't get 98 days off work!) please donate.

Keep an eye out for updates on our blog.

Thank You and wish us well!

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Diagnosis

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Accurate diagnosis has never been straightforward for aspergillosis, but modern tools are being developed rapidly and are now improving the speed and accuracy of diagnosis. A patient presenting at the clinic will first be asked to give a history of the symptoms that they have noticed. Depending on this history a number of tests may be requested from the following list:

  • A blood test
  • X-rays or CT scan of the chest
  • A skin test to measure sensitivity to Aspergillus allergens
  • Culture and analysis of a sputum (mucus) sample
  • Culture of tissue fluids e.g. lung fluid (called BAL)
  • A bronchoscopy – where a flexible tube is passed down into the lungs while under sedation.
  • A sample or biopsy of a tissue mass (if present) in a lung cavity

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What do the tests show?

Blood tests: Antibodies against Aspergillus proteins can be measured in a patient’s blood and this indicates if the patient may have an Aspergillus infection – this is done using an enzyme-linked immunosorbent assay (ELISA), such as the ImmunoCAP® Specific IgE Blood Test.. A positive result means that antibodies to the fungus have been detected. A positive test result is also a useful marker for later comparisons to assess efficiency of treatment. Occasionally a false positive result may occur which is why a number of different tests are used in diagnosing aspergillosis. Sometimes markers of allergy to Aspergillus are positive in the blood. A test for a particular fungal molecule sometimes found in the blood – called the galactomannan test may also be carried out on a blood sample.

Other tests include blood countplasma viscosity and C-reactive protein, which may indicate inflammation – such markers usually improve on treatment so a baseline level is helpful. Liver and kidney function tests are important as liver function can be abnormal on antifungal drugs. Also, some aspergillosis patients may have low levels of a substance called mannose binding lectin (MBL) and display abnormal genes for this protein.

chest X-ray allows visualisation of the inside of the lungs and may identify an abnormality such as any lung cavities – formed as a result of another underlying disease or infection, or if a fungal ball (aspergilloma) is present. A more advanced cross sectional picture of the lungs may be needed, in which case computer tomography (CT) might be necessary. The procedure relies on X-rays to produce a detailed image. You will need to lie still on a narrow table, which slides into the centre of the CT scanner where the X-rays rotate around you. A scan normally takes only a few minutes.

skin test where a small needle is used to scratch the surface of the skin can be used to detect whether a patient has circulating IgE antibodies specific for Aspergillus. This is a more common test if you have asthma or ABPA. A positive result indicates that the patient is sensitised to AspergillusSee immune system.

A sample of sputum, other tissue fluids or tissue biopsies may be sent to the laboratory to be cultured, in order to see if it is possible to grow Aspergillus from the sample. Scientists use a special culture plate to grow moulds, and if any does grow they often use a microscope to confirm the type of mould. Another way of detecting Aspergillus is with a sensitive molecular testing method.

bronchoscopy is a procedure where a flexible tube is passed into the lungs to view the lung and airways – the patient is sedated during the procedure. Samples of the lung tissue or fluids can be biopsied through the bronchoscope for examination in the laboratory by culture and molecular tests, if needed. See more.

Biopsies are small samples of tissue taken from infected areas (e.g. lung, sinus) that are either sliced thinly, stained and examined under a microscope, or are placed on nutrient media that allows any fungus present to grow – the fungus can then be identified.

The results of the above tests are then considered together and if aspergillosis is confirmed a suitable treatment regime will be started.
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Symptoms:

Symptoms can be widely different depending on the type of aspergillosis that a patient may have. For instance one patient with an aspergilloma may have few symptoms or just a cough, another may cough up large quantities of blood (haemoptysis) and require urgent medical attention The following is a general list of some of the symptoms which aspergillosis patients can experience – but there is a large variation between patients.

  • weight loss
  • fatigue
  • fever
  • cough
  • coughing blood (haemoptysis)
  • breathlessness

A patient with some of these symptoms may not have aspergillosis – in fact it is unlikely, unless the person has a poor immune system (eg. following cancer therapy, organ transplantation). If a person has not responded to several doses of antibiotics and has a weakened immune system then tests for aspergillosis should be considered. 

 
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Loneliness and Aspergillosis

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Believe it or not, loneliness is as bad for your health as obesity, air pollution or physical inactivity. Some studies put loneliness as equivalent to smoking 15 cigarettes per day.

In a recent poll in our Facebook patient group for people with chronic forms of aspergillosis 40% stated that they were lonely more than once per week and 75% of those stated that they were lonely every day. In total 73% recorded loneliness at least occasionally.

We also asked people who care for aspergillosis patients the same questions and this time 56% stated that they were lonely more than once per week, with 78% lonely at least occasionally.

Give those two poll results, are people lonely because they have a chronic illness that might restrict their socialising, and are they lonely because they look after someone with a chronic illness?

The level of loneliness in the general population in the UK is currently at 45%, so there are clearly more people who are lonely in both groups affected by aspergillosis (73% and 78%). Furthermore, 30% of those people who have chronic aspergillosis in our poll were lonely every day, which compares poorly with national statistics that show the number of people in the general population who are lonely as frequently as every day is only 5%.

Conclusion: There are six times as many people with chronic aspergillosis that are lonely every day compared with the general UK population!

Loneliness is clearly a big problem for people who either have chronic aspergillosis or care for someone with chronic aspergillosis.

What can we do about this?

Firstly, awareness of the problem is a big step forward. Awareness of its far-reaching consequences for our mental and physical health may provide some incentive to take action to try to change things. The campaign to end Loneliness (https://www.campaigntoendloneliness.org/the-facts-on-loneliness/) has found that those affected can be of all ages/genders/able or disabled/chronically ill or not and they aim to inspire everyone to connect and communities to come together to help. Nobody should be without company who wants it.

They also provide a lot of useful hints and tips on how to reduce your loneliness (https://www.campaigntoendloneliness.org/feeling-lonely/ ), how to connect with others a bit better, and reduce your health risks – if nothing else at the moment we all could do with getting together to keep warm! Regardless of why you feel lonely, we can all find a way to make connections no matter how fleeting – they all count.

Here at the National Aspergillosis Centre we hold weekly meetings for all patients both here in the UK and abroad

Zoom meetings are a casual and fun way to chat with fellow aspergillosis travelers and NAC staff (Tuesdays 2-3pm GMT and Thursdays 10 – 11am GMT) in which you can just sit and listen to us all chatting for an hour – all you need is a smartphone/tablet/laptop to join us.

The meetings are private so we do not give instructions on how to join on a public page such as this. For directions on how to get involved join one of the following groups and we will get back to you:

Telegram support groups

Facebook support groups

 

Of course some people are entirely happy on their own
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Doing a disability assessment

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In order to claim government help for living with a disability you will have to complete a disability assessment. This can be a stressful and demanding experience, so we have gathered some helpful tips from those who have already been through the process.

 

Keep all of your medical records and letters and make sure you have access to online records and appointments. On the day of the interview, take a copy of all the paperwork with you, so you can refer to it if needed.

Try and keep a diary of all of your symptoms and the effects that they have on your life for a few months before your assessment. Symptoms that may have become routine for you are still severe and need to be mentioned. “Mention every little niggle”.

Speak to Citizens Advice, or the equivalent in other countries, as they are experienced in navigating the large amounts of paperwork and helping you prepare for the interview. Often people are in a difficult emotional state when trying to fill in assessments, and having the support from a third party is a big help.

When asked about your symptoms and how your condition affects your life, think about how you are on your worst days. A ‘good’ day to you almost certainly still involves many wearing symptoms, so make sure you don’t accidentally gloss over anything.

If you’re in the UK, look at subscribing to the Benefits and Work website. They have guides to applying for UK disability benefits, and some of our patients have found their diary templates and wording examples very useful.

Look or ask for tips from others on the Aspergillosis Facebook support group. Also join groups such as The ESA DLA UC & PIP Survival Guide, or the equivalent in other countries.

If you don’t get all you need from your first interview, appeal. Some departments have targets to reach for the first interview, but on appeal you may be more likely to succeed. Even if that’s not the case, you will be better prepared the second time around.

Ensuring aspergillosis is recognised as a severe health condition: As aspergillosis is such a rare condition, those drawing up disability guidelines may not be familiar with the disease. The more people know about aspergillosis, the better! The best way to do this in the UK is to get in touch with your local MP and ask them to check with the Minister of State for Disabled People, Health and Work, to ensure that aspergillosis is included as a long-term, incurable, debilitating condition. Refer your MP to the National Aspergillosis Centre for more information. The more people advocating for aspergillosis patients, the more well-known and understood a condition it will become.

For more information:

Last Updated on June 19, 2019
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