People who have had asthma for many years commented on how dramatically treatment has improved in the last few decades.
We talked to everyone about how they use their medication, and what changes they make if their asthma flares up. For some people with very mild asthma, using a reliever inhaler may be enough to control symptoms on the odd occasion they appear. Others had a preventer and a reliever but only used them when symptoms were evident, e.g. in the summer during the hay fever season or during or after exercise.
Most commonly people used the preventer type inhaler on a daily basis, but would increase or decrease the amount they took depending on their peak flow measurement and how they were feeling. When things flared up they might need a course of oral steroids or antibiotics for infection in addition to inhalers.
Alastair’s asthma is triggered by hay fever. He uses a preventive inhaler from May onwards, and it never gets really bad. Exercise can trigger it too.
Dee varies her medication according to her symptoms, and keeps in regular contact with the asthma nurse. [AUDIO ONLY]
Peter explains how he now has the confidence to self- manage his asthma, and uses a peak flow meter every day to keep a check on things.
Current guidelines (British Thoracic Society/ SIGN September 2016) suggest that if you need your reliever inhaler 3 or more times a week in the daytime or more than once a week at night, or have had a severe attack in the last 2 years, you should be using a preventer (steroid) inhaler. If none of these apply it may be safe to reduce your preventer inhaler, stepping up again if symptoms recur. Decisions about stepping inhaler medication up or down or taking an add-on therapy such as steroid tablets should be taken with guidance from a GP or asthma nurse.
Over time, as people built up a trusting partnership with their GP or nurse, some said they had gradually learned to recognise when to step treatments up or down for themselves, and to know when to go and ask for further help. Some people said their confidence increased just by knowing that the GP or asthma nurse trusted them to manage their condition.
Dee said her asthma management strategies were “a combination of what I’ve learnt from the people who’ve looked after me in asthma clinics and my own experience, all sort of blended”.
Val controls her own medication.
Val’s treatment was recently reviewed at the asthma clinic. She feels supported in controlling her own medication, including taking steroid tablets, when she needs to.
Some, like Jane, liked to check in with a doctor or nurse before starting on steroid tablets, but were more confident about altering their inhaler dose.
Jane can start a course of steroid tablets if she feels she needs to and keeps a supply at home, but checks with the GP by phone to confirm that it is the right thing to do.
Looking back some people realised that when first diagnosed they hadn’t managed things well, and had realised later that recurring symptoms were the result of poor management. Often this was because they hadn’t understood the importance of regular use of inhalers, or how to use the inhaler correctly.
Andreane had little contact with health professionals when first diagnosed, but a few years later when she saw an asthma nurse realised she hadn’t been taking things seriously enough.
Andreane was referred to hospital after a serious asthma attack where she saw an asthma nurse who helped her to understand the best way to keep symptoms under control. I didn’t fully understand what controlling asthma was.
Margaret’s experience was similar: “Although I was compliant and taking my inhaled steroid every night, I don’t think my technique was correct. Years later I realised that I wasn’t getting the steroid down me, as much as I should.”
Jane Y described her first few years after diagnosis as a “journey” as she gradually learned how to manage her condition.
It took a while for Janes GP and consultant to find the right medication for her. For a while her asthma seemed very difficult to manage, but now she says she feels she is 95% in control of her asthma.
Not everyone we spoke to was confident about managing things. Ann was still trying to work out how to keep her asthma well-controlled after a recent diagnosis of late-onset asthma, and feels she needs more input from health professionals.
Val likes the fact that her GP trusts her judgement. Being able to alter her medication according to how she is feeling gives her more control.
Ann’s GP practice does not seem to have a regular review system and she finds it difficult to know when to seek help or how to judge if her asthma is well controlled.
Remembering to use preventer inhalers regularly can be difficult if symptoms are not apparent or mild. Some people said they can find they forget to use them sometimes, or that they had been told to use them every day but didn’t feel they needed it when their symptoms had disappeared. The GP or asthma nurse might suggest that it is appropriate for people to reduce or stop using their preventer inhaler.
Esther said, “Human nature kind of dictates that if you’ve been well for a long time you get a bit less methodical.” Often, though, symptoms are absent because of the effects of the preventative medicine, so it’s important to use the preventer inhaler every day if one has been prescribed. Esther knows this, and thinks both she and her daughter who also has asthma should be more careful about taking the preventer regularly.
Val is sometimes tempted to stop taking her inhalers but has realised that it’s not the best approach. “Some people when they feel their asthma is settled they stop taking the inhalers. I mean sometimes I’m quite tempted to do that, and then I think ‘no you mustn’t do it’, because it’s a known fact that if you’re stable and you stop taking your inhalers you’re going to get unstable again.”
Regular routines can help people to remember, as Margaret suggests.
For Margaret the most important thing is to ensure that you are taking the medication correctly and regularly. It’s just part of the morning and night routine, before you clean your teeth, you take your inhaler.
People mentioned other strategies that helped them to feel in control of their asthma rather than letting it control them. Being organised and making sure there were reliever inhalers kept in different places (around the house, and at work, for example) helped people to feel “safe”. Several people said they planned ahead, so that if they were going somewhere unfamiliar they would have a plan of what to do and where to get help if they felt unwell: Chris called these “exit strategies”.
Jan has learned to be practical and plan ahead. The lessons I’ve learned are never to take it for granted.
Taking regular exercise can help improve lung function, and some people said it made them feel as though they were actively helping to prevent their asthma from worsening. At the same time, if exercise is a trigger this needs to be done carefully. People who were wary about taking exercise sometimes found that they could manage more than they expected by using the reliever inhaler either before they began to exercise, or during an exercise session if they felt breathless or wheezy.
As well as these practical solutions, people also talked about how important it is to keep well emotionally and mentally, particularly because stress and anxiety can make things worse. Having supportive friends, relatives and health professionals encouraging you to do the things you want to do can really help.
Some people had tried counselling for anxiety, cognitive behavioural therapy, or complementary therapies such as meditation and breathing techniques. As Tomas pointed out, just having a positive mental attitude can make a huge difference.
Tomas has had lots of support from the people around him and feels this has helped him to develop a positive attitude towards managing life with asthma.
Using a peak flow monitor at home
Using a peak flow meter regularly, and keeping a diary of peak flow readings and symptoms can be a good way to keep track of things and see patterns of change more easily. Peak flow readings can give objective information to help judge if things are getting worse and a person needs to take action or get help.
Some people said that the peak flow measurement was useful, but also “knowing your own body” or “listening to your body” was equally important. Some people felt peak flow readings might be misleading because their measurement often falls below the ‘normal’ measurement, but they know from experience what is normal for them.
Andreane explains how she uses the medication, and how the peak flow measurement helps her to know when to make adjustments. She feels I’m now beginning to know my body.
(Also see Medication and treatments: inhalers, Medication and treatments: other treatments, Asthma attack and emergencies, Relationships, friends and family, Dealing with health professionals and Exercise diet, weight and other lifestyle issues).