Severe asthma and difficult to control asthma

If you often have asthma symptoms and attacks, it might be difficult to control or severe asthma.

If you often have asthma symptoms and frequent asthma attacks you might have difficult to control asthma or, more rarely, 'severe' asthma.

What is severe asthma?

Severe asthma is a type of asthma that affects a very small number of people with asthma (less than 5%). Someone with severe asthma has difficulty breathing almost all of the time, and often has serious asthma attacks. Severe asthma isn't simply 'asthma when it's really bad', or an extreme form of asthma - it's a specific type of asthma which requires specialist care and support.

Most people with asthma can manage their symptoms very well by taking their inhalers regularly as prescribed and in the correct way. People with severe asthma have symptoms that are much harder to control because they don't improve with the usual asthma medicines - even when they're taken as prescribed. People with this kind of asthma usually need more complex treatments more often and usually see a specialist alongside their GP or asthma nurse.

For example, one type of severe asthma doesn't respond to steroids, so is known as 'steroid refractory asthma'. As steroids work so well for so many people with asthma, there is a lot of research going on into why some people do not benefit, and what can be done to support people with this kind of asthma.

What is difficult to control asthma?

Around 13 per cent of people with asthma have 'difficult to control' asthma. This means they have difficulty breathing almost all of the time and often have potentially life-threatening asthma attacks even though they're on high doses of medication.

There are lots of different reasons why you might have asthma that's difficult to control. These include:

  • having other long term conditions that make it harder to manage your asthma, for example a heart condition or diabetes
  • being a smoker, which makes asthma symptoms worse and stops asthma medicines working as well
  • finding it hard to get into a good routine of taking your inhalers and other asthma medicines regularly and in the best way. This means you're not getting the right dose at the right time to help get your symptoms under control.

But my symptoms are severe - isn't that severe asthma?

People describe their asthma in different ways. Perhaps you use the term 'severe asthma' to describe your asthma because you're having bad asthma symptoms a lot of the time or you're finding it hard to manage your asthma well. Perhaps your GP or asthma nurse told you that you have 'severe asthma symptoms' that are potentially life-threatening if not treated.

Having severe asthma symptoms for a short time - perhaps as a result of a cold virus, or hay fever, or when you're going through a period of stress - can happen to anyone with asthma.

But having severe asthma symptoms doesn't always mean you have a diagnosis of severe asthma. The percentage of people with true 'severe asthma' is very low. Most people with severe symptoms have asthma that's difficult to control.

But I always need to take my reliever inhaler - I must have severe asthma

If you need to keep taking your reliever inhaler this doesn't necessarily mean you have severe asthma but it does mean your asthma is not well controlled. If your asthma symptoms are getting worse you should see your GP or asthma nurse to talk about your asthma care and how you can get back in control. It may be that your medicines need to be reviewed, or that you need to get into a good routine to help you remember to take them.

But most of the time, difficult asthma symptoms can be treated, and, with the right medicines and support, you can get back on track with your asthma.

Use a written asthma action plan to help you manage your asthma well.

If you're still always having severe asthma symptoms, your GP may refer you to a specialist clinic for tests to see if your asthma is a severe asthma type. Other things will also be taken into account, such as any other conditions or allergies you might have.

Don't put up with difficult asthma symptoms

Some people who have a lot of severe asthma symptoms and frequent asthma attacks may still not be given a diagnosis of severe asthma.

If you're having difficult asthma symptoms, don't ignore them - symptoms are a sign that your asthma is not well controlled and that you're at risk of an asthma attack so it's important to do something about them.

In the short term your GP or asthma nurse might prescribe a course of steroid tablets to reduce the inflammation in your lungs and help your asthma get back under control.

You might be prescribed a long-acting reliever inhaler to take alongside your usual preventer inhaler, or extra add-on treatments to help you manage your asthma symptoms.

Working closely with your GP, asthma nurse or specialist to find out the best asthma treatment for you can help you with your asthma. This might mean trying something out for a while, and then reviewing it with your doctor to see if it has helped. It may help to keep a diary of your symptoms and any improvements you see. And it's very important to take any medicines exactly as prescribed - it's only if you take them in the right way, at the right time, that you can see whether the medicines do or don't work for you.

Whatever treatment you're given, it can only work if you stick to it as prescribed

It's not unusual for people with long term conditions such as asthma to find it difficult or worrying to have to take medicines all the time. Perhaps you don't believe you really need your asthma medicines, or you're worried about the side effects and it puts you off. If concerns about your asthma medicines mean you're taking less of them, skipping doses or even stopping taking them all together, this is likely to make your asthma worse. And if you're always forgetting to take your asthma medicines or not taking your inhaler in the best way, you won't be doing a true test of the treatment prescribed to you.

Most people with difficult to control asthma can get back to good asthma control with the help of the right asthma medicines and by following the usual asthma management advice.

How is severe asthma treated?

Someone with severe asthma needs to take high doses of medicines all the time to keep their asthma under some kind of control.

Most people with severe asthma are prescribed oral steroids because they have a proven track record of helping with asthma symptoms. Many people are concerned about potential side effects of steroids - especially people with severe asthma because they usually have to take oral steroids at high doses to keep their asthma under control. But the benefits of taking them as prescribed usually outweigh any disadvantages of potential side effects such as mood swings, or weight gain.

The risks of not taking them when they're needed include putting yourself at an increased risk of an asthma attack - so they are an essential option at times for most people with asthma.

Your asthma specialist will be well aware of the possible side effects and will always keep an eye on the doses and medicines you need for your asthma.

Nebulisers

The specialists treating you will consider if you need a nebuliser very carefully.

Having your own nebuliser at home is not recommended unless your specialist says you need one. If you are prescribed a nebuliser with nebules to use at home you must use it exactly as prescribed.

Physiotherapy

Specialist physiotherapy is an important way to manage severe asthma. Physiotherapists based in asthma clinics can use physiotherapy to remove phlegm from the lungs to clear your airways, and explain ways for you to restore good breathing patterns. They can also give you plenty of advice about staying fit and exercising, if you're able to. This is important because it helps to improve your lung function.

Psychology

The clinical psychology team can help you deal with the psychological challenges of living with a long term condition, giving you advice and support on coping with your asthma and asthma medicines on a daily basis, as well as ways to deal with stress, anxiety and depression. Sometimes people wonder why they need to see a psychologist. But this is not about anyone thinking your symptoms are all in your mind - this is about the team recognising the very real issues your condition can bring up and how they might have an effect on how you think and feel about your life.

Bronchial Thermoplasty

This is a specialist procedure done in hospital. It is suitable for some adults with severe asthma.

Xolair

This is a medicine given in the form of a regular injection once every two or four weeks. It is a treatment sometimes recommended for people with severe allergic asthma.

What's the outlook for people with severe asthma?

People with asthma are often concerned about what a diagnosis for severe asthma means for them in the longer term. Their worries are often made worse by a lot of different medical terms flying around on websites and internet forums, such as 'airway remodelling', 'COPD' and 'ACOS'. So what do these terms mean?

Airway remodelling

'Airway remodelling' means the way someone's airways can change over time with the walls of the airways becoming thicker so the airway itself is narrower and it's harder to breathe. This can happen if someone has severe asthma - or if they're not managing their asthma well, and having frequent asthma attacks. It's not altogether clear what causes airway remodelling but lots of studies suggest that inflammation and poor asthma control play an important part. Long term exposure to pollutants, for example at work, increases the risk of permanent thickening of the airways.

You might have poor asthma control because it's been hard to find the right medicines that work for you, or perhaps you're not taking your medicines exactly as prescribed.

Whatever the reason, if you're having lots of symptoms all of the time over a long period of time then there's a risk your airways will become permanently narrowed, scarred and inflamed which can mean your symptoms get worse.

How can airway remodelling be avoided?

For most people these changes to the structure of the airways can be avoided with good asthma management. But this is often easier said than done for people with severe asthma. Even so, regular reviews of the medicines you're on to check how successful they are at reducing your symptoms is the best way to minimise the risk.

It's also vital for anyone with asthma to be aware of known pollutants and irritants such as dust and fumes, and to avoid them where they can. Giving up smoking comes top of the list of things you can do yourself to cut your risk of airway remodelling.

COPD

COPD stands for Chronic Obstructive Pulmonary Disease and is a collective name for a number of serious lung conditions. If you have asthma your lung function is normal between flare-ups. But someone with COPD will have poor lung function all of the time and when they take a reliever it doesn't open up the airways so it doesn't always help.

What are the chances of going on to develop COPD?

Long term severe or difficult asthma can lead to COPD. You're more likely to be given a COPD diagnosis if you tick all the following:

The most important thing to realise is that if you're not looking after your asthma well, and you smoke, you're putting yourself at increased risk of not only asthma attacks but permanent poor lung function and COPD.

ACOS

ACOS stands for Asthma and COPD Overlap Syndrome which is basically a way to describe a condition which shares features of both asthma and COPD. More evidence about ACOS is needed but so far research suggests that if you have ACOS you have poor lung function all the time, frequent asthma attacks, and your quality of life is likely to be affected.

A diagnosis of ACOS is more likely if:

  • you're over 40
  • you've had asthma for a long time
  • you smoke.

What you can do if you're worried about ACOS

  • Talk to your asthma specialist, and make sure you have a good written asthma action plan to help you manage your condition in the best way possible.
  • Take all your prescribed medicines regularly to reduce your risk of an asthma attack which can lead to inflammation and scarring in the airways.
  • Look at things you can do yourself to limit the damage to your airways. For example, give up smoking, avoid other people's smoke, and keep as fit as you can so your lungs have the best chance of working well.
  • Be aware of signs that your asthma is getting worse and act on them quickly to avoid an asthma attack.

Living with severe asthma

People with severe asthma often describe quite different experiences of asthma to people with other types of asthma.

People with this type of asthma are more likely to have asthma attacks that are life-threatening, and to spend a lot of time in hospital, even though they're taking a lot of different medicines regularly.

Often someone with severe asthma will need to rely on a partner or other family member to care for them when their asthma is bad and for family members, friends and co-workers to know what to do and act quickly if they have an asthma attack.

Living with a long term condition like severe asthma can be a very challenging experience and can affect the whole family. That's why it's so important to make the most of all the different kinds of support available to you at your specialist asthma clinic.

The emotional impact

Having severe asthma can sometimes have an effect on the choices you feel you can make in your life. Sometimes it's even difficult to hold down a job, or to keep up with your studies.

If you're feeling down about your experience of asthma, or you think the treatments you're taking are affecting your mood, speak to your consultant about it. You can also try talking with other people going through similar experiences on our forums. You could think about sharing your experiences so that others know the true extent of severe asthma - people sometimes find this a useful way to deal with it.

And don't forget to call our Helpline on 0300 222 5800 (9am - 5pm; Mon - Fri) to talk anything through with one of our friendly asthma nurse specialists.

Is severe asthma counted as a disability?

Yes, severe asthma, which affects less than 5% of the over 5 million people with asthma, can be considered a disability. To find out how to apply and register, and about financial and other kinds of assistance look on the gov.uk website.

What's being done to make things easier for people with severe asthma?

Many people don't realise that some people with asthma have symptoms so severe that current treatments don't work. So it's crucial that more is invested in asthma research to find the life-changing treatments people with asthma urgently need.

Asthma UK funds scientists throughout the UK to come up with new treatments and ultimately find a cure.

Find out more about our groundbreaking research including research specifically looking into inflammation and airway structure as a way to help severe asthma.

If you'd like to support us fund this research, why not make a donation and/or find out about our fundraising events across the UK.

How can the NHS meet the needs of people with severe asthma?

Asthma UK works with health professionals and organisations across the UK to give people the best chance possible of reducing the impact that asthma has on their lives. Recently, we helped a number of leading health professionals to submit a proposal to NHS England. This proposal recommended how specialised asthma services could be designed to meet the needs of people with severe asthma. We included the views and experiences of people with severe asthma in our recommendations.

Last updated July 2015