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What is Severe Asthma?
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“There is immense grief associated with chronic illness. My hope is to have just a few days free of asthma.”–Rosemary Koina, Asthma Champion
“I constantly try to do things eg joined a choir again…. got sick, found I just couldn’t sing any more. (Croaky voice now, not enough puff). Had to give up. I want to be able to swim regularly…. flare ups get in the way. I have gone back to Tai Chi….have missed the last 2 sessions due to being in Emergency with asthma and another particularly bad flare up. I want to be able to make plans. I want to live without all of the side effects.”
For people living with severe asthma, saying they have ‘asthma’ is not enough to describe it. Severe asthma is a debilitating breathing condition experienced by up to 200,000 Australians. No one with asthma takes breathing for granted. People with severe asthma are some of the strongest people we know.
Someone with severe asthma may have regular asthma symptoms or asthma attacks despite being on high doses of medication. Their asthma may not completely respond or completely recover with usual asthma medicines.
Treatment for severe asthma may require high doses of inhaled medication plus other special medicines. People with severe asthma may try a lot of medicines over their life. They may experience persistent and life-threatening breathing problems and need emergency care.
The airways are the tubes that carry air into the lungs. Normally, they are calm and smooth. In asthma, the airways are hypersensitive and can react excessively to triggers like pollen, pet dander, air pollution and viruses. The airways may narrow due to swelling, muscle spasms or excessive mucus production. Narrow airways make breathing difficult, causing the symptoms of asthma and asthma attacks. During a life-threatening asthma attack, the body struggles to move oxygen in and carbon dioxide out. This can be a terrifying experience and many people with severe asthma talk about the trauma and fear of reliving this experience or not knowing when it might happen again.
Over the past 10 years, we have seen new, specialised treatments become available for people with severe asthma. These require prescription by specialist respiratory doctors who will conduct a detailed assessment. If no specialist treatments are suitable, your specialist doctor may be able to work with you to better control your asthma with other available treatments. To find out how to get a referral to a respiratory specialist, see How to Access Better Asthma Care.
Whilst treatments are evolving, more research and development is needed to improve the quality of the lives of people with severe asthma.
What causes severe asthma?
There are several factors that may cause severe asthma, but research has yet to determine exactly why some people develop it and others don’t. Severe asthma is more likely to develop in people who are older and have impaired lung function, but this is not always the case. Sometimes asthma becomes more severe after a respiratory infection.
Listen: Severe Asthma podcast series Episode 1 by Healthtalk Australia.
What Are Severe Asthma Symptoms?
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“Initially I felt like I had sandpaper in my airways. My chest feels tight… like an elephant is sitting on me. I feel as if there is something in the way making it hard for air to enter. I am always short of breath.– Rosemary Koina, late onset of asthma diagnosed as severe asthma at age 65.
“On good days my peak flow is still in the caution zone. It only gets into the ok range when I am taking steroids or using a nebuliser with Ventolin for up to 4 times a day. I always cough.. so severely that I vomit and lose bladder control. My asthma is worse in the morning. I rarely wheeze…. I know I am pretty bad if I am wheezing. I constantly cough up yucky stuff. I get terribly tired.”
It is not normal to have ongoing frequent breathing problems caused by asthma. Most people can breathe well on the right medicine, supported with a written Asthma Action Plan.
Asthma symptoms happen when the airways are narrowed or inflamed and can include:
- Consistent breathlessness
- Heavy or tight feeling in the chest
- Wheezing
- Continuous cough
- Difficulty speaking in full sentences
- Constantly puffed doing usual tasks that others can do easily
- Often allergic responses to pollen and dust mites
- Highly sensitive to triggers including emotions, exercise, cold air, colds/flu
- Commonly reported are extreme sensitives to strong scents and smells, chemicals
Other conditions or traits can make your asthma more severe or even mimic uncontrolled asthma symptoms. Many of these traits are treatable. Identifying symptoms that are not common in asthma will help you and your health care team diagnose these other conditions. This is important because if some of your symptoms are not caused by asthma, asthma treatments won’t help them. Finding the right treatments will reduce their impact on your breathing.
Common overlapping traits and conditions include:
- Fixed Airflow limitation
- Anxiety and depression
- Breathing pattern disorder
- Excess mucus
- Inflammation
- Obesity
- Sleep apnoea
- Reflux
- Vocal cord dysfunction
Let your health care team know if you think some of your symptoms might be related to one of these other conditions.
Listen: Severe Asthma podcast series Episode 2 by Healthtalk Australia
Diagnosing Severe Asthma
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“I acquired severe asthma in 2014 at the age of 65. I was a fit and active retiree. I caught the flu, and a rhino virus (from grandchildren) and was left chronically ill.– Rosemary Koina, Asthma Champion
“Getting diagnosed was really hard. I was backwards and forwards to the GP. Tried a variety of puffers over those 6 months and was still constantly coughing, having trouble breathing. Finally my GP, suggested that I was “anxious” and prescribed vallium. I was pretty upset by this and refused to take it. I saw a different GP and he tested for rhino virus, this was 6 months after it all started. This new GP did the rhino virus tests and spent the time to explain about the different asthma medications and how to use spacers. After months of backwards and forwards, 9 months, I finally saw a specialist. At this point, scans showed I still had fluid in my lungs, 95% oxygen saturation at my best, scarring in my lungs and spirometry showed asthma. I had spent several occasions in hospital (at least 6 admissions) prior to seeing the specialist…one occasion I had waited nearly an hour to be seen at Emergency and was about to go home…… my oxygen saturation was 87% when I was finally seen. I have averaged 6 to 8 hospitalisations a year ever since until this year. Severe Sleep apnoea was also diagnosed by the first lung specialist in 2015.”
Diagnosis is often a long and difficult journey between doctors, hospitals and life-threatening asthma attacks. But with the right help, this can be reduced.
Getting referred to a respiratory specialist is the first step in being assessed for severe asthma.
A respiratory specialist can diagnose severe asthma after conducting a thorough physical assessment and appropriate medical investigations. For regional and remote patients, modern telehealth systems can be used to enable specialist reviews from a distance.
The first thing a respiratory specialist will do is confirm you have asthma. A spirometry or lung function test will be organised. This is an important part of understanding what’s happening in your airways, like how much the airflow is obstructed and whether it looks like asthma or a different condition.
If you have not had a spirometry or a lung function test and you are taking asthma medications, you should arrange one by calling your doctor.
The second step is to address any treatable factors that are worsening your asthma. Examples of these might be that your preventer prescription needs adjusting or inhaler technique is incorrect. Addressing these factors can be enough to get you back on track. There may also be ‘add-on’ medicines available that could be effective for you.
Other medical conditions can also influence asthma. A respiratory specialist may look for other respiratory illnesses, cardiovascular disease, gastric reflux, allergies and hay fever, obesity, sinusitis and mental health issues. You doctor will help you understand whether any of these are impacting your asthma and what you might do about it.
Your doctor might also explore your personal circumstances and lifestyle. Simple things like stopping smoking, improving diet, weight management, increased physical activity and altering your physical environment can all improve asthma control. You may need to adjust medicines a few times, which can require you to remain persistent and keep track of your symptoms.
If all these things are managed and addressed, and you still have persistent symptoms or attacks, then you may have severe asthma.
Your specialist may look for recognisable patterns in your specific condition to arrive at the best treatment plan for you.
Some patterns will include:
- how often you experience symptoms and flare-ups,
- your lung function,
- looking for a particular type of white blood cell called an eosinophil or an immune protein in your blood called an immunoglobulin, both of which are connected with allergies
- breathing tests that look for signs of a specific type of lung inflammation (FeNO Testing)
What is FeNO Testing?
FeNO testing measures (as a Fraction) the amount of gas called Nitric Oxide when you breathe out. It is another way for your doctor to understand what is happening in your airways. Nitric Oxide is found in your airways when you have high levels of a certain type of inflammation (redness and swelling).
FeNO testing is easy to do and takes very little time. It is more likely to be offered at respiratory laboratories (lung testing clinics) or lung specialist clinics.
Using FeNO testing, your doctor will have a better chance at targeting treatment for your asthma. Together with the results from your FeNO testing and all the factors and patterns of your asthma, your doctor’s aim is to target your asthma treatment to your needs.
Phenotypes and Severe Asthma
Together, all of this information tells your doctor about the type of severe asthma you might have. We call this your ‘phenotype’ and your phenotype will help your doctor decide which specialist treatment to prescribe.
The three currently understood phenotypes in severe asthma (and even more broadly in asthma) include
- allergic asthma: indicating asthma driven by allergic processes
- eosinophilic asthma: indicating asthma driven by eosinophils in the blood, and
- non-eosinophilic asthma: indicating asthma that’s not driven by either allergies or eosinophils.
Some patients that have overlapping allergic and eosinophilic phenotypes can be described as having Type 2 (or Th-2 high) asthma, which can be approached as its own phenotype.
From here your specialist will design your treatment plan with you specific to your ‘phenotype’.
Severe Asthma Treatments
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“I have worked with my respiratory specialist for the last 10 years. I started with him after being intubated and placed on a ventilator for the first time in 2012 after a life threatening attack.”
“I have an average 4-7 admissions a year of 3 days to 4 weeks. 2021 has seen that increase to 10 admissions including 2 intubations. I see my doctor weekly, and bloods are checked at least fortnightly. We can sometimes predict an attack when white cells, neutrophils and CRP increase a lot. I see my respiratory specialist every 6 weeks to 3 months year round” – Katrina Whiley, Asthma Champion
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“I have taken singular for 24yrs, it was catalyst in getting my asthma under control. I still take it today and if I miss one I know I have. I have used a lot of different medications over the years.”
“It’s difficult to balance and find what works as my body gets used to them and we have to reset and start once more. I‘ve live in Australia 14yrs and only been admitted to hospital once and that was brought on by stress and losing my mum. In the UK a thunderstorm took me down in seconds and landed me in intensive care. I can feel the changes in my breathing and know when to up my doses. I also have prednisalone (sic) in my medicine cabinet and know if and how to take it, but it is a last resort.” – Kathryn Heathcote, Asthma Champion
There is no straightforward, silver bullet treatment for all people with severe asthma. It will be a combination of therapy and personal behaviours that will differ person to person. Treatment plans may need to be adjusted over time. This might apply for times when there is a heightened risk, such as pollen season or bushfires.
Treatments for severe asthma are evolving and are designed to treat the three main specific phenotypes of asthma
People with severe asthma will have their phenotype assessed to determine the right treatment option for them.
Severe asthma medical treatments include:
Inhaled corticosteroid and long-acting beta-agonists (ICS/LABA) (inhaled) (double combination preventers)
Double combination preventers (ICS/LABA) are the mainstay of asthma management in moderate and severe cases and work by suppressing the inflammation and sensitivity of the airways (ICS) and relaxing the airway muscles, allowing them to open (LABA). People with severe asthma usually need to use moderate to high doses of these therapies to control their asthma.
Read more about combination preventers
Inhaled corticosteroid, long-acting beta-agonists and long-acting muscarinic antagonists (ICS/LABA/LAMA) (inhaled) (triple therapy preventers)
Triple combination preventers (ICS/LABA/LAMA) work similar to ICS/LABA but have a third medicine that helps further relax the airway muscle allowing them to open (LAMA)
People with severe asthma usually need to use moderate to high doses of these therapies to control their asthma.
Read more about triple therapy preventers
Long-acting acting muscranic antagonist (LAMA) (add-on therapy [inhaled])
These medicines aid the relaxation of the airway muscles, allowing them to open and are added on to ICS/LABA when needed.
Read more about add-on therapy
Leukotriene receptor antagonist (add-on therapy [tablet])
These medicines act in a different way by blocking a pathway that causes a typical allergic pattern of asthma.
Monoclonal antibodies (biologics)
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“Eventually after months of uncontrolled asthma and multiple trips to emergency I was able to see a specialist who diagnosed me with severe eosinophilic asthma.”
“I am currently undertaking monoclonal antibody therapy benralizumab and breo inhaler once a day. Unfortunately, my lung function remains low, but I feel like I have gained control my asthma symptoms. I find it challenging in the winter months with chest infections, this year I have had two respiratory infections and one that turned into pneumonia which was challenging as mum of two.” – Danielle Morris, Asthma Champion
Monoclonal antibodies (biologics) are injections provided either every 2, 4 or 8 weeks which block the pathways that cause inflammation (swelling, sensitivity, mucus production) in the airways.
Biologic therapies are ground-breaking as they interrupt the processes that cause inflammation of the airways in a person with severe asthma. These medications target chemical signals called interleukins, that act as “links in the chain” of airway inflammation. Blocking a signal can break the chain and reduce inflammation.
Currently, monoclonal antibodies are available that target Immunglobulin E (IgE), Interleukin 5 (IL-5) and Interleukins 4 and 13 (IL-4/13).
They currently include:
- Dupixent (dupilumab)
This can be prescribed for adults and adolescents 12 years and older whose severe asthma is caused by ‘type 2 inflammation’. Dupixent targets and blocks the interleukins IL-4 and IL-13.
- Fasenra (benralizumab)
This can be prescribed for adults and adolescents 12 years and older with severe asthma. It targets the IL-5 receptor and reduces the number of eosinophils.
- Nucala (mepolizumab)
This may also be prescribed for adults and adolescents 12 years and older with severe asthma. It also targets IL-5 and reduces the number of eosinophils
- Xolair (omalizumab)
This medicine may be prescribed for adolescents and adults with moderate to severe asthma caused by allergic pathways, as indicated by high levels of IgE
It may also be prescribed for children 6-11 years with severe asthma caused by allergic pathways .
Macrolide Antibiotics (tablets three times weekly or daily)
Macrolide antibiotics reduce inflammation via modulation of the immune response and via direct reduction in inflammation. The medicine used for this is:
- Azithromycin (this is the generic or active ingredient, where its trade name may vary depending on your prescription and pharmacy)
Bronchial Thermoplasty
Bronchial thermoplasty is a specialized invasive procedure that applies heat to the muscles in the airway walls, reducing the amount of smooth muscle around the airway and therefore reducing the potential for severe airway tightening. This procedure may be recommended only after careful consideration of your individual and unique circumstances. Whilst it can be very effective, it is an invasive treatment delivered over three sessions, and cannot be reversed. Your severe asthma specialist will discuss this option with you and a multi-disciplinary team to determine whether it’s going to the right one for you.
Oral Steroids (tablet and liquid)
Oral steroids are prescribed only if inhaled therapies and other add-on treatments don’t work to prevent severe asthma attacks.
Oral steroids have severe, long-term side-effects if taken frequently or for extended periods of time. Your doctor will work with you to make sure you are on the lowest dose, for the least amount of time possible.
You can find out more about the risks and benefits of using oral steroids for asthma here.
If you have been on oral steroids for a long time, and want to know what other health checks you should be having to monitor the side-effects, see here.
One piece of good news is that they are no longer part of the criteria for starting a specialised monoclonal antibody (biologic), so few people require ‘maintenance’ oral steroids anymore. If you are using maintenance oral steroids, talk to your specialist about other specialised options.
Listen: Severe Asthma podcast series Episode 3 by Healthtalk Australia
Disclaimer: Asthma Australia does not make specific treatment recommendations. Treatment decisions need to be discussed with your doctor. We aim simply to give you the information you need to have those discussions.
