Secondary Adrenal Insufficiency
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This month's (March) patient meeting included a presentation by Endocrinology Specialist Nurses from Manchester Royal Infirmary. This was a talk we requested as we know secondary adrenal insufficiency is a concern for many patients.
Allergic bronchopulmonary aspergillosis (ABPA) is a complex respiratory condition that occurs when the immune system overreacts to the Aspergillus fungus, leading to inflammation and potential lung damage. To manage the symptoms of ABPA, patients are often prescribed corticosteroid medications. However, long-term use of these medications can lead to a condition called secondary adrenal insufficiency. Watch the talk below to learn more about the condition, it's diagnosis, management and treatment.
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Virtual Support Meetings Moving from Zoom to Microsoft Teams
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We will, in the coming weeks, be moving our virtual patient support meetings from the Zoom platform to Microsoft Teams. The NAC Cares Team understands that for some, this is an unfamiliar application, and the change can be daunting. We will be assisting in this transition and helping guide people by utilising both platforms.
Microsoft Teams is a powerful tool that offers all the same features as Zoom. Here's a step-by-step guide on how to attend the meeting as a guest:
The meeting link works in a similar way to Zoom, and you can register for a link through Eventbrite. If you have any issues, you can contact the CARES Team at [email protected]
Clinking the link will open a web page, where you'll see two choices: Download the Windows app and Join on the web instead. If you join on the web, we advise the use of Google Chrome. Your browser may ask if it's okay for Teams to use your mic and camera. Be sure to allow it so you'll be seen and heard in your meeting.
If you want to install Microsoft Teams on your device, you can follow the prompts and on-screen instructions. Once the app is installed, enter your name and choose your audio and video settings and then hit join now.
If you enter the meeting lobby, wait for one of the CARES Team to admit you.
During the meeting:
- Once you've joined the meeting, you'll be able to see and hear the other patients/relatives.
- You can choose to turn on or off your camera and microphone by selecting the camera or microphone icons at the bottom of the screen.
- There is a chat function to send messages to other participants.
Leaving the meeting:
To leave the meeting, select the "Leave" button at the top-right corner of the screen.
If you wish to download Microsoft Teams you can do so via the link below:
https://www.microsoft.com/en-us/microsoft-teams/download-app
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IgG and IgE explained
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Immunoglobulins, also known as antibodies, are proteins produced by the immune system in response to the presence of foreign substances, such as viruses and bacteria. There are different types of immunoglobulins, including IgG and IgE, which play different roles in the immune system. In aspergillosis, both IgG and IgE antibodies play important roles in the immune response to the Aspergillus fungus. This post aims to provide important information about the differences between IgG and IgE.
What is IgG?
IgG is the most common type of immunoglobulin in the bloodstream, accounting for about 75% of all antibodies in the body. IgG plays an important role in fighting off bacterial and viral infections and is also involved in the immune response to certain types of cancer cells. IgG can cross the placenta and provide protection to a developing foetus, which is why it is referred to as a "maternal antibody."
Elevated levels of IgG antibodies to Aspergillus are often seen in individuals with Chronic Pulmonary Aspergillosis (CPA), and measuring IgG antibody levels is an important diagnostic tool for the condition.
What is IgE?
IgE is a type of immunoglobulin that plays a role in the allergic response. IgE is produced in response to exposure to allergens, such as pollen, pet hair, and certain food, and for patients with allergic bronchopulmonary aspergillosis - aspergillus fungus. When IgE binds to an allergen, it triggers the release of histamine and other chemicals, leading to the symptoms of an allergic reaction, such as:
- Wheezing
- Coughing
- Shortness of breath
- Chest pain or tightness
Differences between IgG and IgE
There are several differences between IgG and IgE, including:
- IgG plays a role in fighting off bacterial and viral infections, while IgE is involved in the allergic response.
- IgG has a longer half-life in the bloodstream than IgE, which means it stays in the body longer.
- IgG takes longer to produce in response to an infection or exposure to an antigen, while IgE is produced rapidly in response to an allergen.
Both IgG and IgE antibodies play important roles in the immune response in aspergillosis. While IgG helps to neutralise and eliminate the fungus, IgE triggers the allergic response and leads to symptoms in individuals with Allergic Bronchopulmonary Aspergillosis (ABPA). Measuring antibody levels to Aspergillus can be helpful in diagnosing and monitoring these conditions.
More information on the role of IgE and IgG can be found via the links below:
https://onlinelibrary.wiley.com/doi/10.1111/all.14908
https://www.britannica.com/science/immune-system/Classes-of-immunoglobulins
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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:
- 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.
- 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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