This event has ended. Recordings of the event are available to watch below.
Content Table
On Saturday 21 January 2023 we held a free online patient conference that focused on severe and difficult asthma.
The conference was co-chaired by a person living with severe asthma and a healthcare professional, with presentations covering the following topics:
Full details of the day, including timings, speakers and presentation titles can be found in the programme below.
Presentations were from both patient and medical experts. Attendees had the opportunity to ask questions to the speakers.
Olivia Fulton is a severe asthma patient advocate from Edinburgh, Scotland. Olivia is the Patient Co-Chair of the Severe Heterogenous Asthma Research collaboration, Patient-Centred (SHARP), helping to ensure research focuses on the priorities of people living with severe asthma. Olivia is involved with a wide range of organisations to improve treatment and care including the European Lung Foundation, Asthma and Lung UK, Cochrane and ICU Steps. Olivia has delivered training to researchers and health professionals around involving patients and members of the public in research and shared her experiences at many conferences.
https://www.linkedin.com/in/olivia-fulton-449862186/?originalSubdomain=uk
Ratko Djukanovic is Professor of Medicine at the University of Southampton and Honorary Consultant Physician at University Hospital Southampton Hospitals Trust, with a primary interest in respiratory medicine, especially asthma. His career of more than 3 decades in respiratory medicine has enabled him to undertake basic research into asthma mechanisms, relying on samples obtained from patient volunteers, with a focus on stratification of asthma into subtypes, or phenotypes. He has always been supportive of collaborative work and has founded many collaborative studies, including U-BIOPRED and SHARP. He firmly believes that all research should be guided by patients’ needs and that patients should be at the heart of all research projects.
Kjeld Hansen is the Chair of the European Lung Foundation. He is an experienced patient advocate and has been involved in a wide range of research and advocacy activities to improve care for respiratory patients. Kjeld has moderate to severe asthma. In his professional life, he works at Kristiania University College Oslo, Norway and is also associated with Copenhagen Business School in Fredericksburg, Denmark.
Dr Ramesh Kurukulaaratchy is Associate Professor at the University of Southampton and Honorary Consultant in Respiratory & General Medicine plus Allergy at University Hospital Southampton, United Kingdom (UK). Ramesh led the Regional Difficult Asthma Clinic at Southampton for 11-years and developed it as a multidisciplinary team. His research interests include studying the development of asthma and allergy across the lifetime, identifying predictors of asthma and allergy-risk and potential ways of preventing asthma and allergy development. He is involved in several long-term asthma and allergy studies through the Isle of Wight research group. He also leads the WATCH study of difficult asthma at Southampton, studying difficult asthma subtypes at both clinical and molecular levels and has a particular interest in the concept of multimorbidity. Ramesh holds grants with NIH, Asthma and Lung UK and Industry, is involved in several US and European research collaborations and has authored over 95 scientific publications.
Professor Vanessa McDonald is a Professor of Chronic Disease Nursing in the School of Nursing and Midwifery at the University of Newcastle, Australia. She is Co-Director of the Centre of Excellence in Severe Asthma and the Director of the Centre of Excellence in Treatable Traits. Vanessa’s research interests are centred around the development of innovative approaches to the management of chronic airway diseases, particularly severe asthma and COPD. She is passionate about the development and implementation of personalised medicine strategies that place the person at the centre of health care delivery.
Dominique Hamerlijnck has a Masters in Philosophy, specialised in ethics and a Masters in Business Administration. Dominique is one of the European Patients’ Academy on Therapeutic Innovation (EUPATI) fellows.
Dominique has worked as a patient expert especially in the field of severe asthma. She has been successful in getting the patient voice heard and included in development in care and medicine and device development. Dominique is involved in the SHARP Severe Heterogenous Asthma Research collaboration, Patient-Centered Clinical Research Collaboration and many other research projects.
https://www.linkedin.com/in/dominique-hamerlijnck-a3b8ba/
Maja Zrnić is employed at the Golnik University Clinic for Lung Diseases and Allergy in Slovenia. She is an active board member in the pulmonology section of the Chamber of the Association of Slovenia and a member of the International Coalition of Respiratory Nurses. At the same time, she is part of a multidisciplinary team for the treatment of severe and problematic asthma. She stands for high-quality and safe treatment of patients with asthma and for appropriate education and training of medical professionals. Maja participates in various research and spreads knowledge about the appropriate treatment of patients with asthma through active lectures.
Dr Anneke ten Brinke works as a pulmonologist at the Medical Centre Leeuwarden, The Netherlands, were she started a Severe Asthma Centre and is involved in clinical care of patients with severe asthma. She built an international reputation as an expert on severe asthma and was rewarded to become Fellow of European Respiratory Society (FERS) in 2021.
Anneke chairs the Dutch Severe Asthma Registry (RAPSODI), participates in several national and international guideline committees and Task Forces on asthma and has an active role as National Lead and Study Coordinator in the ERS Clinical Research Collaboration SHARP, the European Severe Asthma registry.
Karen Vande Casteele is a severe asthma patient from Ghent, Belgium. She studied languages but had to give it up when she developed Addison's disease.
When she feels well enough she tries to give people with severe 'invisible' chronic illnesses a voice.
Luciano Cattani is a severe asthma patient advocate, founder and President of the Italian Severe Asthma Association, Associazione Asmagrave.
In his professional life, Luciano was an executive in the Pharmaceutical Industry from 1994 to 2010. He developed severe asthma as an adult and it took several years to get a diagnosis and appropriate treatment.
Prof Dr Renaud Louis is full professor, academic head of the department of respiratory medicine at University of Liege and CHU of Liege, Belgium since 2004. He served as secretary of the group 5.3 allergy and Immunology of the assembly 5 “Airway diseases” at the European Respiratory Society (ERS) from 2002 until 2005. He was president of the Belgian Thoracic Society from 2013 until 2014. He currently sits in the steering committee of the SHARP (ERS research project on Severe Asthma) and has co-chaired the ERS task force on “Diagnosis in asthma in adults” just recently published. He has focused his clinical research on asthma for 30 years developing the technique of induced sputum as a research tool to investigate mechanisms of airway inflammation but also applying it in clinical practice as an aid to asthma management. He is currently running, together with Pr Dr Florence Schleich, a busy asthma clinic at CHU Liege with more than 200 hundred severe asthma patients receiving biologics. He has become GINA advocate in 2020 and is author or co-author of more than 380 publications. He was associate editor of International Journal of Clinical Practice (section respiratory medicine) and European Respiratory Review.
Mia is a busy, full-time working mum and step-mum to 6 children. She has been a severe asthmatic following a virus at the age of 21. Mia believes in positivity and refuses to let asthma rule her life. She has been taking a biological drug for quite some time and it has totally changed her asthma management.
Dr Rolf Wolters works as a respiratory physician at the Dutch Asthma Centre in Davos, Switzerland (Nederlands Astmacentrum Davos). He is an expert in Alpine Altitude Climate Treatment (AACT) and supervises a team of healthcare professionals who treat patients with severe asthma over the course of 8 to 10 weeks.
Sven-Erik Dahlén (MD, PhD, Fellow of ERS and BPS) is professor of asthma and allergy research at Karolinska Institutet in Stockholm and the Lung- and Allergy Clinic at Karolinska University Hospital. He is recognised for translational research on biological effects of eicosanoids (Leukotrienes, prostaglandins and related compounds) and the use of eicosanoid metabolites as biomarkers in asthma. He is leading international and national consortia for phenotyping of severe asthma (BIOAIR, U-BIOPRED, BIOCROSS, and the asthma part of 3TR). He has much experience with both preclinical research and clinical trials for the development of new treatments for asthma.
Celeste Porsbjerg is a Professor of Severe Asthma, Senior Consultant and Head of the Respiratory Research Unit, Department of Respiratory Medicine Bispebjerg Hospital, Copenhagen.
Celeste has worked within asthma research for over 20 years, covering a number of topics within asthma phenotypes, airway pathophysiology and airway immunology mechanisms.
As a clinical researcher, her key focus is to solve important clinical problems for patients, through combining clinical studies with state-of-art laboratory methods, in collaboration with international translational asthma researchers. I head the Respiratory Research Unit at Bispebjerg Hospital, the largest of its kind in Denmark, with an advanced set-up for in-depth clinical and pathophysiological patient assessments. In 2022 she was appointed as co-chair of SHARP, an international severe asthma research collaboration.
Dia is a lifelong maker, nonprofit program developer, severe asthmatic sometimes known as a badassmatic, advocate, Stanford Medicine X ePatient Scholar, and a patient leader of the Canadian Severe Asthma Network. Dia was diagnosed with severe asthma in 2010, following an asthma diagnosis in her childhood. She became interested in asthma advocacy, out of necessity to improve her quality of life. Her lifelong participation in sport led her to a BPHE, BS, MS in Physical Education, Kinesiology and Biomechanics. She refuses to be bound by limited options, getting “sick enough “ for transplant and the notion that reduced quality of life is “par for the course”. She took matters into her own hands by arming herself with research, having the difficult discussions with care teams, advocating for enhanced inclusion in decision making and becoming an advocate for patients to build collaborative teams of their own care. She has an infectious enthusiasm for clinical trial participation and patient involvement in respiratory research.
Irantzu Muerza Santos is a severe asthma patient advocate from Spain. She is involved in ASMABI EUSKADI, an organisation which supports people living with asthma in the Basque Country, Spain and participates in a range of local and international projects to raise awareness of severe asthma.
| Question | Answer |
| What is the difference between asthma and severe asthma? Is this only the use of medications and a biological? | The terminology around more complex asthma can be confusing and several terms are used, sometimes rather loosely. The definitions have their limitations and are partly based on symptoms and the level of treatment needed to address them. Strictly speaking uncontrolled asthma is a term used to describe asthma associated with frequent symptoms and/or attacks.
Difficult-to-treat asthma is defined by both level of symptoms and amount of treatment needed to address those symptoms (or which fails to address those symptoms). Severe asthma is where the asthma remains uncontrolled (symptoms and/or attacks) despite treatable factors having been addressed and maximal inhaled therapy being taken, or, asthma that only stays well-controlled if high dose therapy is taken. Severe asthma can be considered as a subset of difficult-to-treat asthma. |
| I have heard of Type 2 asthma, or asthma with type 2 inflammation. Why is there so little information about this type of asthma, and should treatment or therapy alter for this type of asthma?
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Asthma is a type 2 inflammatory disease, as are esophagitis, urticaria, dermatitis, nasal polyposis… They all have an origin that is type 2 inflammation, which usually has a genetic and cellular component.
If a person has any type 2 inflammatory disease, their children will most likely also have one of them, although this may not be exactly the same as their parent. Obviously, the life we lead today also has an influence, for example pollution, and a long list of possible triggers for this type of type 2 disease, which includes asthma. |
| Is it common in a severe asthma attack that the O2 levels stay quite stable but that the CO2 levels are rising high? | A normal O2 level with rising CO2 level in an asthma attack is not common. A rising CO2 in acute asthma would more often be expected to accompany a low O2 level. However, a rising CO2 in a patient with acute severe asthma is a serious “red flag” finding. It warns that the patient is showing signs of exhaustion and that they should be regarded as having a near fatal asthma attack. They therefore need intensive treatment, which may involve additional emergency ventilatory support for their breathing and very close monitoring. |
| I am a patient and take 2 injections of dupilumab a month. My question is the co-relation between asthma and mucus production. Is it treatable? | There is a relation between asthma and mucus production. Eosinophilic inflammation in particular can increase mucus production, which can be treated by decreasing the eosinophilic inflammation – this can be done using prednisolone. There are also now biologic treatments which alter the mucus production, especially anit-IL5(R) and dupilumab. |
| My response to dupilumab is very good. I feel good but I have this sensation of having mucus production in my throat frequently. Why is that happening? | It is not easy to respond without an examination, but I wonder if you have upper respiratory tract problems which often get neglected by doctor and patient alike because it is easy to think that all problems come from asthma. You may have a condition called post-nasal drip which gives a sensation of a tickle in the throat and mucus dripping at the back of your throat. If this is the case then assessing for chronic rhinitis and sinusitis is helpful. Treatment can be as simple as using a salt spray regularly to clear the back end of the nose. |
| Is it possible that there is a case of asthma when there is no or very limited inflammation in bronchoscopy? It should be a non T2 type of asthma? | Yes, these people do exist and sometimes may benefit from other approaches e.g. bronchial thermoplasty and potentially some newer biologics. |
| Where could patients find more information about the different phenotypes of asthma? | There is some information available here about different types of asthma: Types of asthma | Asthma + Lung UK (asthmaandlung.org.uk) |
| Question | Answer |
| When there no eosinophils and every time there is also a low FeNo (fractional exhaled nitric oxide) could there still be a T2 high possibility? | These test results suggest a different cause for the asthma and the doctor may be able to order tests to clarify the situation. |
| Please can someone explain to me what my lung function and spirometry tests show? I find spirometry and (even more) full lung function tests extremely stressful and very triggering – I don’t understand what they show and have come to experience them as ‘a trick’ – because they have been used by medics to somehow prove that what I say I am experiencing is not, in fact, what I am experiencing. I will say that I am feeling very symptomatic but the doctor or nurse will look at the numbers (whatever they mean!) and say that that’s not what the lung function or spirometry is telling them. As if I have any control over that! It’s like the numbers trump my lived experience. These exchanges are very diminishing of me as a knowledgeable patient and how I feel able to communicate about my illness and ultimately they undermine my trust and positive relationship building with professionals. | Spirometry shows whether the bronchi are constricted or optimally open (see Dr. Ten Brinke’s presentation from session 3 of the ELF Severe asthma patient conference). Typically, the team would measure what is called FEV1, a measure of how much (in litres) air you can expel by breathing out forcefully within the first second. If that is normal, then your doctor/nurse can only conclude that at that moment your lung function is good.
What needs to be considered is whether lung function is stable, so several measurements may be needed. This can be done also at home using a peak flow meter but its use can be tricky. If not done well it can be very confusing so you need to be trained to use it properly (see Maja Zrnić’s presentation from session 2 of the ELF Severe asthma patient conference). It may also be that some of your symptoms may not be due to asthma. It is difficult to know without seeing you in person and examining you but I hope this is helpful. I just want to add, that to my experience you can feel absolutely awful and your stats are not that bad… And you can have a very severe asthma crisis and barely noticing it yourself. It’s not easy to deal with this mentally. Sometimes you’re coming out of an asthma-attack and your whole body feels that. It would be nice if the doctors appreciated that too and gave you time to recuperate and really get better instead of just declaring you ‘healthy’. |
| I have a family member who has had FeNO being normal and therefore asthma being dismissed as the issue despite years of inhalers and steroid treatment. Is this the only indicator used.
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A normal fractional exhaled nitric oxide (FeNO) (< 35-40 ppb) result does not exclude asthma at all. Normal FeNO values are seen in the majority of asthmatics. Moreover regular treatment with inhaled corticoids (ICS) can normalize FeNO value. High FeNO values are typically seen in so called T2 high patients. Typically, these may be mild allergic asthmatics not receiving inhaled corticosteroids (ICS) or severe non allergic asthmatics resistant to high dose ICS. |
| Is FeNO and spirometry the best way to check the lungs?
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These tests are non-invasive and complementary. The combination of spirometry and fractional exhaled nitric oxide (FeNO) may help in asthma diagnosis and monitoring. A value of FeNO >50 ppb in a new patient with symptoms evoking asthma has a great specificity (90%) that a limited number of false positive cases. However, the sensitivity is limited and close to 60% that means you can have asthma with FeNo below 50 ppb.
In general FEV1 assesses the airway permeability while FeNO assesses airway inflammation. FeNO is also a good predictor of clinical response to inhaled corticosteroids (ICS). In patient already treated by ICS a high FeNO suggest either a poor compliance or a necessity to upgrade the dose of ICS to further control T2 inflammatory process. Airway inflammation can also be assessed by induced sputum cell counts analysis but this can only be performed in expert centres and should be reserved to investigation of severe asthmatics. |
| Can it be possible that the saturation levels drop when exercising with asthma? Also when one day they stay normal and the other day they drop? | No, it is not the case. We do not see a fall in oxygen saturation in asthmatics during exercise. Asthmatics usually keep a good diffusion of O2 through the lung membrane. A fall of oxygen saturation rather suggests alternative diagnosis such as COPD or emphysema. |
| What if the trigger for eosinophilic asthma is never located (or at least initially during diagnosis). Mine occurred after a virus but my consultant doesn’t seem to accept that was the trigger for some reason. | You are right to state that asthma can start after viral infection. Additionally, some viral induced asthma may be eosinophilic. It is not only allergy that triggers eosinophilia. Some patients have severe non allergic eosinophilic asthma. Often, but not always, this is associated with nasal polyposis. This is usually quite a severe form of asthma. The reasons behind this disease are not well understood but the disease usually starts after the age of 50.
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| Question | Answer |
| Hi I’ve been having Xolair injections every 4 weeks for 5 months now, haven’t noticed any improvement as yet?? | Yes it is important to have your response to treatment assessed regularly by your specialist and consider whether to continue or stop. |
| Dupixent is used for both eczema and asthma, but immune suppressive medicines like Imuran/Neoral/etc are also having good effect. In other disciplines immune suppressive medicines are also successfully used with auto immune diseases. Could for example Imuran/Neoral/etc be helpful for severe asthma treatment if other options including biologicals are not effective (enough)?
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Vitamin D supplementation is good as it regulates our immune system, prevents it from over-drive. We recommend regular supplementation, especially in parts of the world where there is less sunshine.
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| Biologics are being developed for T2-high patients, but what are the research/treatments being developed for T2-low asthma? | There is, indeed, a trial being conducted as we speak, where doxycycline, an antibiotic with anti-inflammatory actions, is being tested. T2 low is poorly understood and there remains a huge unmet need to both understand the mechanisms and, as you say, develop approaches. In my clinic, I focus on infections, especially those of the sinuses, and reflux. Also weight loss is strongly recommended in overweight/obese people.
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| Having had various inhalers over the years I have tended to use the same technique with all inhalers and inhale with the same strength with all inhalers. However when I went outside the UK I was given a device that had different settings to replicate different inhalers, and discovered the optimum inhalation strength differed by type of device. Should patients be made more aware of the fact that different inhalers may require different strengths of inhalation, and do you think they should perhaps be trained using devices such as the one I mentioned? As it seemed to be to be more infective than just breathing in deeply in front of a nurse. | Not all inhalers are valid for all patients, nor do all patients respond in the same way to the same inhaler or inhalation device. It is essential to adapt the inhaler to each patient, taking into account their physical conditions and other circumstances to ensure a good administration and adherence to the prescribed treatment. Availability of different inhalers varies between countries, so it is important to discuss this with your own doctor to find the best option.
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| When there is no case of overweight and already a therapy for reflux disease and there are no T2 high indicators. What are therapies that are still possible when most of the severe exacerbations (ICU admission) are when there is a case of viral infection. | With careful evaluation, most patients with complex asthma will show T2 indicators. That may need a period of observation to be clearly demonstrated. So T2 biologics are still likely to be an option. We are also moving into a phase of new biologics that may be applicable to those who do not show T2 signals clearly.
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| Interested in knowing the crossover with immunological difficulties. We know lots of individuals with asthma commonly get upper respiratory infections and strep. Should more conversations such as about intravenous immunoglobulin (IVIG) be being discussed? | Intravenous immunoglobulin (IVIG) is a therapy only advised when there is a deficiency of IgG, which can also be in asthmatics with recurrent bacterial airway infections.
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| Are intravenous immunoglobulin (IVIG) treatments an option when there are multiple infections by non T2 asthma, with severe exacerbations? | Yes, but only in rare specific cases of immunoglobulin deficiencies. We tend to look for deficiencies in bronchiectasis and other chronic bacterial infections.
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| Are biologicals becoming available for non-eosinophilic severe asthma?
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There is hope that anti-TSLP treatment, Tezepelumab, might work in T2 low asthma.
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| How do I use fewer oral steroids? I am maxed out on other treatments. I don’t qualify for biologics, but my consultant thinks that Tezepelumab might work for me. I have fantastic lung function when well, and am really sporty. Oral steroids keep me alive, but I hate them. | Corticosteroid dependency is something difficult to treat. Current biologics target allergic and eosinophilic asthma. Tezepelumab is a new biologic and may help people with different types of asthma in the future.
When you have been taking OCS for a long period you are becoming dependent not only because of your asthma but also because your adrenal gland gets atrophic and does not allow your body to cope with stress. So you need corticoid supplementation with oral OCS. It is sometimes possible to wean off OCS very progressively with the help of hydrocortisone. Advice of an endocrinologist is highly recommended in these circumstances. Having said that, it is always worth questioning the utility of regular OCS in non T2 asthma. Better not to start regular treatment if possible, limiting the use of OCS to acute exacerbations of the disease.
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| Why are steroids (immune suppressants) still the only medicines to control inflammation? | There are others such as leukotriene antagonists taken as pills these are not the most effective, but can be great for some people. Recently another pill for asthma inflammation (Fevipiprant) was developed and tested but initial results were somewhat disappointing. Biologics target airway inflammation and in time it may be these are used more widely for milder forms of the disease. In part they are not being used more widely because they are relatively new and they are expensive.
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| Is there an argument that more use should be made of mucalytics? It was only late in my disease progression that I was given Carbocisteine, but I found using these mucalytics has greatly reduced my exacerbations. | Yes this is true. Especially for people with chronic productive cough there is evidence that they can improve symptoms, make the sputum easier to expectorate, reduce cough and for some, reduce exacerbations. Each individual needs to be assessed for their treatable traits and mucolytics can be overlooked in both asthma and COPD.
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| In our set up in low income countries we encourage flu and pneumonia vaccines and use of spacer devices. | Spacer devices with metered dose inhalers (MDI) is essential for good technique to ensure that your lungs get the optimal amount of medication. If a spacer device is available for the type of inhaler prescribed, it is important to get the most out of your inhaler.
Vaccination against flu is recommended for asthma patients in many countries. Pneumonia vaccination differs per country and is more regularly recommended in COPD.
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| Biologics like Xolair target IGE and have been around for at least 20 years. And yes they are very expensive. $1200 US dollars per injection. Why can’t we have more research on low-cost medicine that addresses inflammatory process. | You raise a key problem: cost. In some countries this means that patients depend on oral steroids even for ordinary day to day management because even inhaled steroids, especially in combination with long acting bronchodilators is expensive. This requires politicians to make biologics available. Patient advocacy in this respect, working with doctors, is key for this objective.
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| What are the best options for the people who have severe bronchoconstriction and less inflammation but frequent infections? | Good question, such people should be assessed to understand the reasons and the treatments for exacerbations. Long term antibiotics are gaining ground as a good treatment on top of the usual inhaled steroids and long acting bronchodilators. Biologics can be very effective for the right patients.
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| I know there are a wide range of reasons patients react differently to biologics like genetics, environment etc. But can we learn anything about our asthma phenotype from a reaction to a biologic? For example, I tried Dupixent but had a bad reaction (my asthma worsened significantly). Does this mean the particular mechanism of the biologic wasn’t the right one for my phenotype. | A very good and interesting question, the fair answer is we don’t know. We are just at the start of learning about the reasons for the differences in reaction to biologics.
Research has started to find aspects to see who has a good or excellent reaction. But there is growing interest to study what we can learn from those who do not respond or even get worse on biologic treatment. Hopefully in the future we will have more answers.
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| What research is there for long-term use of biological treatments?
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The primary research is in relatively short-term studies to test whether they work mainly as randomised controlled trials, but these often may be for 6 to 12 months. Follow up studies may obtain the outcomes for longer term effects. In many countries there are databases of people on biologics containing baseline data and regular follow up – these may be linked to hospital or primary records and provide very rich data sources for long term benefits and rarer side effects. Some of these are very large and involve many countries. The SHARP network is a good example.
In some countries prescribing government funded biologic treatment has a condition that all such patients have their anonymous data entered in national databases.
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| Pulmonary Lavage (washing out lungs) is sometimes used when obtaining biopsy samples from inside the lungs, would lavage also benefit some asthma patients in any way, such as removing irritants from in the lungs or removing excess mucus | Bronchial lavage will not benefit the asthma, removing irritants is not possible and you will breathe in them again. For mucus when you suck it away it will come back, because the cause is not resolved. In uncontrolled asthma a lavage can harm the patient and trigger an asthma attack. So you need to be careful with this procedure.
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| What is the average elevation above sea level to qualify as an alpine climate?
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For over a century, alpine climate therapy has helped treat patients with asthma and other pulmonary diseases at altitude clinics. Most of the clinics are located in the Alps at between 1200 and 2500 meters (3937 and 8202 feet) above sea level, where hypoxia does not greatly stress the body.
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| Do the benefits of high altitude therapy prove to be permanent once the person is at home again?
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There is a range of results. Some patients have near-permanent effects, on the other end of the spectrum are patients that fall back in as quickly as weeks. It remains very difficult to determine which patient retains effect and which doesn’t.
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| The high altitude therapy seems excellent, but only for the happy few? Is this correct or do I need to reconsider? | In the Netherlands there is reimbursement for alpine climate therapy. In other European countries as Germany, Swiss, France and Italy there are also alpine climate therapy clinics for asthmatics.
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| I am on the biological treatment Benralizumab, self-injecting every 8 weeks, is it common to see a tapering off of effectiveness in the last two weeks before injecting with the next dose?
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This is something that patients report. As far as I am aware, the reason for it is not clear.
When we asked in a survey, several patients reported this the last days or week before the injection, while others don’t experience this at all. This is a field for more research. Does it mean that patients are undertreated and should benefit for shorter intervals? We don’t know yet, and have to realise that then the drug will become even more expensive. I know that in some cases the intervals are adjusted, shorter or longer, but we have to learn more about personalized dosing in the next years. Several patient attendees at the conference reported a similar experience of reduced effectiveness as the time to the next dose approaches. |
| Are Tumor Necrose Factor alpha (TNF A) blockers also a possibility for the treatment of non T2 asthma? | Yes, there were two trials and unfortunately both were negative.
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| When should you make a decision to intervene? And what extra can a hospital do? Currently nebulizing 4 times a day, medication maximum. Permanently stuffy, domestic environment currently not optimal due to leakage. | I think it is good for a pulmonologist to see what kind of asthma you have and whether there are additional options, especially now that there are several new options.
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| Question | Answer |
| I use omalizumab for 13 years now and have the feeling it doesn’t help me as much anymore and the side effects are aggravated, is there a replacement biological possible (with hopefully fewer side effects)? | There is evidence that switching from one biological to another can be helpful to control asthma in a better way. So please discuss it with your doctor.
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| Question | Answer |
| I have severe asthma, I use inhaler, medication and a biological. I don’t feel very asthmatic I only have to cough a lot. Only the last time my voice is not ok, does this include the asthma or can it be a side effect of COVID which I had February last year. | Voice can be affected by inhaled corticosteroids. It is a good idea to rinse your mouth after taking your inhalers as this can help with getting issues with your voice. However, a poor voice can also be a sign of uncontrolled asthma. And of course, there can be other reasons, that are not related to asthma at all. We would advise talking to your doctor about it. |
| Is there any theory known about using too much inhalation therapy (inhalers) making the symptoms worse? Or no good reaction on aerosols? And would that be induced by the working medicine or would it be about the other components (like the gas inside of aerosols) that can irritate the lungs itself by higher use?
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From real life data and from theory, using too much bronchodilators, as salbutamol, can worsen your asthma. The theory is that every time relaxing the bronchial smooth muscles by salbutamol after bronchoconstriction this will increase the bronchial hyperresponsiveness, leading to more asthma symptoms and even asthma attacks. From the real life data we know that overuse of salbutamol is related to asthma attacks and even to asthma deaths.
The gas used in inhalers (propellant) can irritate the airways. I’m not aware if this will be dose dependent, i.e. the more times you take an inhaler, the more it will irritate the airways.
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| What is the experts’ opinion on the impact of steroids (ICS and OCS) on teeth and what asthma patients can do to look after their teeth?
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Teeth and oral health can be affected by inhaled corticosteroids. It is a good idea to rinse your mouth after taking your inhalers as this can help tackle side effects. We also recommend using a spacer if it is recommended for the type of inhaler you are using. If problems continue, it may be recommended to get a test for osteoporosis. This can be caused by steroid intake and can affect the teeth.
From a patient’s experience – “When I didn’t take my extra calcium, my teeth hurt and almost became see-through. When I took my calcium again, pain went away and my teeth got their normal colour back.”
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| Question | Answer |
| I would like some more information (when you have time) about thunderstorm asthma. What advice do we give to patients and their family? | In thunderstorms certain pollens rupture allowing them to enter deep in to the lungs. Epidemic thunderstorm events have been studied widely especially after the 2016 event. Those who are at most risk of thunderstorm asthma have allergic asthma and should have their airway inflammation assessed and treated.
I have also added a link to an infographic on thunderstorm asthma from the centre of excellence in severe asthma in Australia 🙂
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| There is often mention by pharmacists and doctors of Aspirin Induced Bronchodilation or NSAID Induced Bronchodilation. This gives the impression most asthmatics may be at risk of being triggered by Aspirin. However, how common is this induction? I personally find no problem with Asthma being triggered by Aspirin and that Aspirin seems to work better for me than many other NSAID | Thanks an important question. Estimates of 5-15% of all people with asthma have aspirin induced asthma, perhaps 25% in severe asthma. Some non-steroidal anti-inflammatories cause this. It is associated with rhinitis and nasal polyps.
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| What is the role of bacteria in the lungs and asthma?
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Bacteria don’t play a great role in asthma or in asthma attacks. In a small group of asthmatics, although, bacterial airway infections can play a role in the burden of asthma. There are some thoughts that disruption of the epithelial layer from the airway wall can make it easier for bacteria to give airway infection.
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| Hormonal cycle has a big impact on my asthma, dropping peak flow by 30% in the three days prior. I am perimenopausal and am finding it hard to know who to seek best advice from. I asked my family doctor to refer me to the menopause clinic, I have been waiting a year and just found out they have actually referred me to Gynaecology. Who would be best to assess perimenopause in regards to asthma control? | Hormones play an important role in asthma and is best dealt with in collaboration between the asthma doctor and a gynaecologist whose specialty is in hormones. Some endocrinologists also have a special interest in menopause. It may be useful to explore HRT with your doctor. Please see some text about that on the Asthma and Lung UK website: Female hormones | Asthma + Lung UK (asthmaandlung.org.uk)
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| Can controlling the quality of the home air effect the quality of life for some? What role can HEPA air purifiers in the home help those with environmental triggers (smoke in the air, fungi in the air, dust mites, pollen)? | The short answer is yes. Various reputable websites describe the steps that may be taken to improve ventilation, reduce allergens (such as house dust mite and fungi). Also using the right chemicals in the home such as for cleaning. However it is important to understand the evidence for some of these interventions is limited and it is important not to let this take over your life!
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| Does anyone have any suggestions for building immunity to viral infections please? | The best way to do this is with vaccines for those viruses for which there is a vaccine. This is the case for COVID and for flu. For the other viruses, sadly of which there are many, there is no vaccine. There is as yet no way to improve generally how our immune system responds to viral infection.
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| Personal action plans are often quite generic. Should they be personalised based on phenotypes especially during exacerbations and when accessing urgent and emergency care? | A personal action plan should be that and be relevant to each individual. However these tend to be relatively short to be clear, so cannot cover everything. They should not be confused with self-management education which should provide the detail of an individual’s personal care plan.
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| In the UK when patients are constantly on steroid tablets like prednisolone or take them frequently often at the same time as a steroid inhaler they may be given a Steroid Emergency Card by the NHS, however this is patchy, with some doctors doing so and others not. Is the risk of adrenal crisis that serious? | Sometimes when people are taking steroid-based medication, their adrenal glands may stop making their own natural body steroid. This may then become a problem when the body needs increased steroids such as when someone becomes acutely ill. In the worst case scenario, adrenal crisis may arise which can be extremely serious. To prevent adrenal crisis, patients should not suddenly stop their steroid-based medication but may also need to increase that medication when acutely unwell. Adrenal crisis is very rare, particularly in people who are only taking inhaled steroids. The UK Steroid Emergency Card is intended to raise awareness of this small risk and advise on how to prevent it. It could be regarded as a very precautionary approach.
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| Has there been any research into the relationship of asthma and menopause?
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There are some data, the perimenopause is associated with higher rates of exacerbations in patients with existing asthma, but probably not new diagnoses. HRT is associated with reductions in asthma symptoms and exacerbations in people with existing asthma and menopause. (more info in this review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153393/)
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| It is difficult for me to see myself as a severe asthmatic patient, I haven’t had a pneumonia or I was not taken to hospital. I only have a cough and I am sometimes short of breath and in my work as a medical dispatcher that is difficult. I would only like to know can it get better? | Thanks, sorry to hear of these problems. It is quite difficult to provide you with an answer on your individual issues. The principles of management of your asthma are similar to most people with asthma- what is driving your symptoms, what has been the response to treatments so far, have you had all the tests you need? etc. If you have not seen a specialist this would be good, and for some seeing of a multidisciplinary team is excellent.
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| As a ‘mixed’ patient – COPD (diagnosed 2011) and severe asthma (diagnosed 2022) – so Asthma COPD Overlap Syndrome. After hospitalisation I received an ‘action plan’ in case of my symptoms getting worse. It’s a booklet of 10 pages or so. Hearing about all possibilities for self-monitoring I’m wondering if there is some sort of standard example for that? | In the Netherlands, for example, we have available a personal action plan (AAP).
https://nederland-davos.nl/persoonlijk-astma-actie-plan/ https://www.longfonds.nl/nieuws/houd-klachten-stabiel-met-het-persoonlijk-astma-actieplan
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| Listen to the patient – don’t dismiss them. Sadly sometimes we are seen as a problem not a key part to the solution
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Completely agree. Severe asthma is a very individual disease and cannot be managed by steps in a guideline. Patients do get blamed. When patients don’t improve after treatment it is seldom due the patient’s fault, (e.g. by smoking or not taking their treatment). However they often get blamed. We have created some patients stories as comics showing the impact of severe and this came out strongly. please check them out- the comics are fun:
https://www.plymouth.ac.uk/research/message/illustrated-stories-of-asthma
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| Does exercise also help patients who are not overweight? And what kind of exercise is most beneficial for patients?
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Yes I think so but we still have to do analysis according to the BMI in our series. I would like to stress that it is gentle but regular exercise for 3 months in our study.
Most patients I encounter on a daily basis place a lot of focus on endurance training (which is a key aspect of training!). However, one shouldn’t overlook the importance of strength training as well, that’s why weight training can have very beneficial effect on asthma control. With increase of muscle strength comes increased overall fitness, core stability and increased ability to keep bodyweight in check. Muscle strength also translates to endurance. I do realise that some people prefer walking over weight training, but do try to keep the above mentioned features in mind. And also, weight training doesn’t have to take a lot of time. |
| Question | Answer |
| How does Dominque [patient] stay positive? | I feel you have choices in how you respond. You can remain angry, sad etc. I have all these emotions as well, but I feel that when I take a step back and think: ok, this is happening now, how can I adjust to the new/current situation? How can I make now as pleasant as possible? That helps me deal with all the unknowns and unexpected events asthma throws at me and make my life, within all the limitations, as pleasant as possible.
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| Asthma and COPD are often dealt with separately. Do you think more clinicians and patients should be aware of Asthma COPD Overlap Syndrome (ACOS) | A great question. People with severe asthma often have a degree of permanent airway obstruction, so their asthma may cause COPD-like problems. Others have asthma and other exposures such as tobacco and develop COPD as well as asthma. Either way each patient needs to be assessed and treated according to their own disease. This includes anti-inflammatory prevention treatment for asthma for all.
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| Adrenal Insufficiency/ Addison’s disease are poorly understood alongside severe asthma. Do you recommend treating asthma with extra hydrocortisone or adding in prednisolone?
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Adrenal Insufficiency is sometimes hard to recognize in severe asthma because 1. there is very often a need for prednisolone or inhaled corticosteroids (ICS) and therefore it is hard to test if there is adrenal insufficiency, and 2. symptoms from severe asthma can mimic adrenal sufficiency or the other way around adrenal sufficiency can mimic asthma symptoms. First of all it is important to make the diagnosis of adrenal insufficiency and then to treat it properly. The doctor has to be aware that adrenal insufficiency can develop in asthma patients when on oral prednisolone or even on high doses of ICS.
What I have learned from a colleague from internal medicine is that the type of adrenal insufficiency is key. In tertiary adrenal insufficiency only a part the adrenal gland is not functioning. Sometimes it might be better to treat with prednisone (glucocorticoids) instead of cortisone (mineralocorticoids). However: most pulmonologists (me included) don’t have complete knowledge about adrenal function, that’s why we are not endocrinologists. It remains important to integrate your endocrinologist in the whole web of asthma treatment.
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| When you have multiple lung diseases (severe Asthma and Pulmonary embolism, Pulmonary infarcts) will there also be a biological one day? | Biologics treat very specific parts of the inflammatory pathways, whereas steroids are less specific. Pulmonary embolism needs a separate approach.
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| For comorbid patients, how does the cooperation between different physicians practically work to ensure the patient is well treated?
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This is an issue that effects a lot of patients. We can often feel like we are running around from different specialities keeping everyone updated. Often they [specialists] all think their area or disease area should be the priority but this is not always the case. From a patient perspective I now at every clinic appointment ask for the clinic letters to be copied to all my consultants. This has helped- it’s not been the magic trick but certainly better than it has been.
New developments are coming for this, pulmonologist and ENT doctors doing outpatient clinics together, there are more often multidisciplinary meetings. Another important thing is the electronic patient dossier, available for all doctors from the same hospital or between different hospitals, which is a great help.
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| How asthma and bronchiectasis affect each other? | This is an excellent question, not least because many people with severe asthma do eventually develop bronchiectasis. It needs to be assessed properly, especially to ensure that a condition called allergic bronchopulmonary aspergillosis (which comes with bronchiectasis) is not missed. Bacterial infections play a big role in bronchiectasis and other lung diseases like COPD. In bronchiectasis, it is particularly important to have regular, preferably twice daily, physiotherapy to clear the phlegm. This has been shown to reduce the risk of flare ups of infections. |
| Is there a relationship between severe asthma and sleep apnoea?
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There is some evidence that asthma can influence sleep apnoea and the other way around. It is always important that when the person is overweight, the doctor has to analyse if there is a sleep apnoea, so additional tests can be done such as polysomnography.
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| Is there any relation between severe laryngospasm that occur in people during an asthma attack? | An asthma attack will usually cause some constriction of the voice box, i.e. laryngospasm, but in some people this constriction is exaggerated which means that spasm of the voice box becomes a bigger problem than the asthma. This can be tricky to diagnose and some doctors are reluctant to attribute the breathing problem to the voice box spasm for fear of “getting it wrong”. We occasionally have patients being admitted over and over.
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| In case of the laryngospasm with asthma when it occurs with the asthma, what are possible treatment options?
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This is best done by a speech therapist. It involves training how to “control” breathing. It is usually very effective. It is helpful to reflect on any underlying stress which can increase the risk of developing laryngospasm. But this is not to say that laryngospasm is “all in the mind”, it is a real problem.
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| I have an operation for Functional endoscopic sinus surgery (FESS), with local anaesthesia in 2019 and after taking Dupixent the OtoRhinoLaryngeal (ORL) status is quite good also because of the biological treatment. So these two illness are correlated one to each other. I used to use the salt spray, but I was interested in some other solutions. Thanks for your answer. | It is correct to link upper airway disease like rhinosinusitis with lower airway disease like asthma. They are essentially a similar disease process affecting different parts of the airways and often exist together in the same patient. Treating one often helps improve the other. There is good emerging evidence for the benefits of biologic treatments like Dupixent on both upper and lower airways disease in the same patient. That is not surprising given that the targets for these biologic drugs are often key players in both diseases.
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| My parents, father had bullous emphysema and my mother has pulmonary hypertension, they both use oxygen. Can this also in the future be for me? Can asthma be so severe that you need some extra oxygen, all the time not only for example when you have an attack? | I think your father may have had bullous emphysema – this is when the lungs get damaged with loss of alveoli (air sacs) with large holes or bullae in the lungs. In severe cases, long term oxygen is required. Pulmonary hypertension may be secondary to lung damage like emphysema or clots on the lungs or for unknown reasons. It is hard to know whether your mother’s pulmonary hypertension may affect your risks of needing oxygen therapy.
It is unusual for people with severe asthma to need long term oxygen, unless they have some other disease such as COPD, pulmonary fibrosis etc. Oxygen is only helpful for people who have low oxygen levels and long therapy should only be given after formal assessments usually in hospital clinics and testing of arterial blood gases.
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The conference was held in English with subtitles.
We provided a live transcription service to allow attendees to follow the conference using subtitles in their own language. The following languages were available: Arabic, Bengali, Chinese (Simplified), Chinese (Traditional), Czech, Dutch, English, French, German, Hebrew, Hindi, Indonesian (Bahasa), Italian, Japanese, Korean, Polish, Portuguese, Romanian, Russian, Spanish, Swedish, Tagalog, Tamil, Thai, Turkish, Vietnamese.
ELF does not charge for its events. We want to make sure they are available to anybody who wishes to join. To ensure we can keep doing this we ask that those who can afford to consider making a donation. We are grateful to everyone who supports us in this way and helps lung health patients to have their voices heard.
We want to say a special thanks to the working group who helped organise this event! Without them, this event would not have been possible.
This event is supported by SHARP, the Severe Heterogenous Asthma Research collaboration, Patient-centred, a Clinical Research Collaboration funded by the European Respiratory Society.
