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Asthma

Adult onset of asthma

Here we discuss people’s experience of being diagnosed as an adult.

Often people who were diagnosed with asthma as adults said they hadn’t realised it can develop at any time of life. It could be difficult to accept to begin with, especially as it may take a while to find the right medication to control it. Eileen said, ‘I just couldn’t understand why I suddenly had asthma. I’d had nothing before’. Val was shocked to be told she had asthma, even though other people in her family had it -‘how can someone as fit as me get asthma?’
 

Alice was diagnosed with asthma in her early 20’s it took about two years to find the right combination of medication to control it. [TEXT ONLY]

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Alice was diagnosed with asthma in her early 20’s it took about two years to find the right combination of medication to control it. [TEXT ONLY]

Age at interview: 59
Sex: Female
Age at diagnosis: 18
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I started to get asthma, just when I left school during the summer of 1970. I went to stay abroad with my aunt by marriage, with my cousin by marriage, it was her mother-in-law we were staying with. And I noticed two things, one: walking up a mountain, I got quite, breathless, which was unusual. I was a much slimmer then and young and thought I was fit, and all so lying down at night, I had this funny wheezing in my throat.

So I was quite puzzled by that and those symptoms continued after I came home. So eventually I went to the doctor and asked what it could be and when I could describe things properly, the breathlessness, and the wheezing, they started investigations, sending me to the local hospital and I was diagnosed quite quickly with adult onset asthma. I didn’t know anything about it at the time, and obviously the symptoms, got worse, that I would have more acute attacks of asthma, breathlessness, and feelings of suffocation. And it took me quite a while to work out a drug regime I was given a Ventolin inhaler quite quickly, and that was useful, and had a few courses of oral steroids, and then eventually was put on steroid inhaler.

And at that time, I was just moving on really from the stage of being at school to preparing for work and I think it probably took me about two years to get a satisfactory drug regime, not because of any lack of care or anything, I think I had very good treatment in London teaching hospitals. I was referred to a very good consultant. They had done all sorts of allergy tests, the only thing I was really allergic to was cats, and I really can't be with a cat, triggers my asthma and is, is quite painful. But it just seemed to take about two years before I got a kind of drug regime that would control my asthma.
 

Julie’s asthma was diagnosed in her 40s after a persistent cough. Until then she had thought of asthma as something children had and could grow out of.

Julie’s asthma was diagnosed in her 40s after a persistent cough. Until then she had thought of asthma as something children had and could grow out of.

Age at interview: 68
Sex: Female
Age at diagnosis: 40
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Well I’d, I had a... I went on coughing after a cold. I had a cold and this cough just didn’t seem to go away and it was really hard coughing. It was painful in my chest and I gradually got to the point where my, I was getting breathless and I couldn’t walk, I couldn’t get about. I mean, just walking a few paces I [draws in breath] heaving for breath.

How long ago was that?

This was 1982… and asthma wasn’t in my consciousness because I thought it was something children had and grew out of at that stage, I’d never heard of asthma appearing in your life when you were 40.

The next time I got a cold, similar coughing. I thought, “Oh dear, this is sort of with me,” you know. Not knowing anything about asthma I didn’t know it was a condition that was there for good. I didn’t know what was going to happen. So I think we moved that year, was it that year? It was either that year or the next year, we moved to [place] so change of doctor’s, change of lifestyle slightly because I was starting to commute and working in London. And I got very bad cold and I was given, I think, antibiotics for the cough and that didn’t really get rid of it. 
 

Val had led a fit and active life until she got asthma in her 50s; the diagnosis shocked her.

Val had led a fit and active life until she got asthma in her 50s; the diagnosis shocked her.

Age at interview: 62
Sex: Female
Age at diagnosis: 57
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Did you know that people could get asthma later on in life or develop it at some stage in their life?

No. Well I should have, because again looking back now, my grandmother had it and my mother’s sister had it very, very, very severely and in fact died of an asthma attack - but in her seventies, you know, and she was always in and out of hospital with it. So I should have realised that you could get it, but no, just wasn’t sure… I might get it as an adult. I just assumed people got it as young children and kept it or got rid of it, ‘cause I know children now can reduce or get rid of their symptoms, but I hadn’t realised that you could be diagnosed as an adult with it.

I mean how did you actually feel yourself about your diagnosis?

I was really shocked, ‘cause I just thought ‘how can someone as fit as me get asthma?’ [laughs]. You know, I was just, but again looking back when I was in my forties I used to do a lot of rock climbing, mountain climbing, and I used to be able to climb some of the highest mountains in Europe and I think one of the first attacks I got, I’d done this mountain two or three years previously, this was some kind of organised group trips. And then I tried to do it again three years later and I thought I was going to die, honestly I just couldn’t breathe and I thought ‘this isn’t right, I can’t be that much less fit than I was three years ago’, and I suppose I should have realised then really that there was something wrong.
In older people, asthma symptoms are more likely to be triggered by colds and chest infections, exercise, stress or environmental triggers such as cigarette smoke, rather than allergy. 

It can be hard to tell the difference between asthma and other conditions causing similar symptoms, such as bronchitis or other chest infections, emphysema (chronic obstructive pulmonary disease or COPD), and heart disease, so sometimes it may take a while to diagnose asthma in older adults.

Ann’s first experience of asthma was a severe episode of difficulty breathing. Her GP sent her to the hospital for a chest x ray, but when the junior doctor at the hospital looked at the x ray he said he thought she had a problem with her heart and did not immediately diagnose asthma. It took several months for Ann to get the right diagnosis which made her anxious and upset, which in turn made her asthma worse.
 

Ann was going through the menopause when she first experienced asthma. She later discovered through Asthma UK that a drop in hormone levels can trigger asthma in some women.

Ann was going through the menopause when she first experienced asthma. She later discovered through Asthma UK that a drop in hormone levels can trigger asthma in some women.

Age at interview: 55
Sex: Female
Age at diagnosis: 53
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What I now, what I now believe again, and if it hadn't been for the Asthma UK website I wouldn't have understood this. But at the time that I became very ill I was going through the menopause. And I had a very long, period running up to the menopause when I had perimenopausal symptoms. But nowhere had I ever come across information about how some women going through the menopause – when their hormonal levels really drop away, which is what I think happened to me, it, they lose their protection in a sense, hormones protect against inflammatory illness. And I think that's the most likely explanation of why I had the onset of severe asthma when I did. And yet when I speak to the health professionals who I've seen, many of them are totally unaware of this as an explanatory factor and I think I'm not sure to what extent they accept it. That's, that’s the health professionals that I've come across.

But it certainly explains my personal experience.
Many people talked about adult onset asthma being diagnosed after they had been out walking, cycling or taking some form of exercise and had suddenly felt unusually breathless or wheezy. Others, like Peter and Charles were diagnosed after finding it difficult to shake off a cough or chest infection.

Looking back, some people like Val who had a family history said they later realised that they had experienced other signs and symptoms of asthma in the past, but it had not occurred to them it might be asthma. Others asked the doctor if it could be asthma, as their symptoms were similar to those of other family members. Alice only discovered after she was diagnosed that there was asthma on both sides of her family.

Often people said it took a while to accept the diagnosis and its implications such as having to be more careful about activities and their environment, as well as using medication, particularly learning to use inhalers. Some were shocked to have a potentially life threatening condition.
 

When he was first diagnosed as an adult Peter didn’t know what to expect or how it might affect his life. Some people are much worse affected than he is.

When he was first diagnosed as an adult Peter didn’t know what to expect or how it might affect his life. Some people are much worse affected than he is.

Age at interview: 62
Sex: Male
Age at diagnosis: 45
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Like many people I thought it was something which affected children and that you might then grow out of. Fortunately some children do, but I understand that’s very rare with late onset asthma.

To be honest I didn’t know what to expect. I certainly had no idea that it could be as severe as it is for some people. I mean I have it kind of moderately badly, but there are plenty of people who have it, you know, very, very much worse than what I do, and the symptoms are much worse. I’ve never been admitted to hospital. Quite a lot of people I meet have been. Some are admitted fairly regularly. And I’d no idea it could be fatal. Its relatively sort of low numbers of people a year, around 1100 or that kind of number anyway, so compared to some of the conditions it’s not that high, but I’d no idea at all that it could be the primary cause of death for well infants, children, teenagers and people of any age. So I’d no idea how widespread it was or how serious it could be. So that just something that you learn as you go on.
Catherine, who has had asthma all her life, reflected on how different the experience must be for people who develop it later in life.
 

Catherine has had asthma since early childhood but can understand that for people diagnosed as adults it can be life changing.

Catherine has had asthma since early childhood but can understand that for people diagnosed as adults it can be life changing.

Age at interview: 39
Sex: Female
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They might have been perfectly healthy for 40 years and then they’ve got it. Which is hugely different to me having it all my life, because to a certain extent I’ve always been like this but for other people they may feel like they’ve had their life yanked away from them.

That’s a whole different ball game.

And it’s a whole different ball game.

There are going to be anger management issues there and resentment that I don’t so much have because... I’ve not known life without it.
Whereas some young people ‘grow out of’ childhood onset asthma as they get older, adult onset asthma is likely to be lifelong, but many people did not realise this. Jane, for example, was quite shocked that she had a condition which would not go away. "I suppose I’d seen myself as invincible but I’d never been ill. I’m not somebody who even gets colds very often. And suddenly I got this condition that wasn’t going to go away"

Once people with adult onset asthma have learnt to manage their symptoms, they may find their asthma remains stable. Stephen had recently been diagnosed and hopes to live as normal a life as possible:
 

Stephen is 25 and thinks his asthma might have to do with smoking while living abroad. He is optimistic and hopes that asthma won’t disrupt his life.

Stephen is 25 and thinks his asthma might have to do with smoking while living abroad. He is optimistic and hopes that asthma won’t disrupt his life.

Age at interview: 25
Sex: Male
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How did you feel when you were told you might have asthma?

There was a say five minutes after I’d actually left the GP, after the chat with the doctor, there was five minutes before I went and collected my prescription where I was kind of depressed. You know, there was a there was a slump but then I decided, you know, “This isn’t going to be a big thing and I’m going to get out. I’m going to train harder. It’s not going to affect my lifestyle.” I’d listened to the story the doctor told me in terms of how his life has continued with it and I just thought, there’s no reason why that can’t be me.

Since I came out of the appointment with my GP that particular day, I thought about my lifestyle over the past couple of years.

I thought, you know, “How has my body changed from two or three years ago until now. You know, what have I done in that space of time that’s having such an effect on my lifestyle.”

I became a regular smoker. There was about a ten month period I was smoking between about fifteen cigarettes a day in Australia. Since I’ve come home I’ve quit that out since January I haven’t smoked at all. It’s now June.

How do you feel about having to see a nurse, say, maybe every three months or twice a year, something like that, about asthma?

I wouldn’t want to do it, to be honest. At the moment, I’d go and see her, you know, as I say, early days, just diagnosed. I’d perhaps go and see her in three month’s time and I wouldn’t want to be scheduled in for another appointment. If I could go and see her the once. That would be that would be great [laughs]. You know, if I was told I had to go every three months it would it would be depressing. It would be a dampener. I’d be extremely de-motivated coming out of the appointment.

Why’s that?

Because it would feel like it’s getting a grasp on my life, you know. It would feel like it’s controlling me whenever I should be controlling it.
Most people can almost completely control their symptoms with medication. But in some, symptoms may change or get worse over time, and that can be difficult to face.

Peter said that for the first couple of years having asthma didn’t affect him too much, but over time it has got worse and over the last 15 years he’s tried various medications. David did not worry when diagnosed because his children had asthma and could control it well, but over time he has got worse. Esther had always strongly opposed any medication and took a while to accept using her inhaler:
 

Esther disliked the thought of using any kind of medication.

Esther disliked the thought of using any kind of medication.

Age at interview: 41
Sex: Female
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I realised that it wasn’t just a matter of fitness, it was actually a medical condition that I had then. And that was when I had to, kind of admit to myself that I was a wheezy person. I had a puffer, I had to take those, you know, I was given prednisolone to make me better. And it was quite a lot to take on board at first. I didn’t really believe in it. And I was really anti-medicine. I always had really avoided taking any pills and avoided taking medicines. So I found it quite hard to take on board that I was an ill person that needed to take medicine.

But I did have to. And then I realise now if I’m wheezy I have my puffer straight away. But I think I’ve, I resisted it for ages and didn’t like the idea of being dependent on drugs. I was quite a natural woman in those days. I was going through my really Earth Mother phase.
A person may have to try several different inhalers to find the one that best controls the symptoms:
 

Eileen felt almost suicidal at the beginning because she was so unwell, but over time she has worked out her triggers and strategies to manage her asthma, and now finds she rarely has to use her inhalers at all.

Eileen felt almost suicidal at the beginning because she was so unwell, but over time she has worked out her triggers and strategies to manage her asthma, and now finds she rarely has to use her inhalers at all.

Age at interview: 62
Sex: Female
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Over the next couple of years it got very much worse that I was virtually dependent on steroids as well as my inhalers for quite a period of time, and antibiotics because my lungs were getting badly inflamed.

It was terrible. I, I could not walk across a normal living space. I would have to sit down half way and recover before I could go on. I would get into bed and I would have a coughing fit. Couldn’t breathe because of the coughing fit, would get back control, which would be just about getting my breathing into control when I’d have another coughing fit and the whole thing would start all over again. And it really was just, just terrible. I couldn’t really live a normal life. I mean, when my asthma was bad it was just so bad I really, I, actually I didn’t want to live because I just couldn’t do anything.

But gradually over time I’ve looked at it I’ve analysed where my problems are because everybody has a different trigger. I know that certain types of stress will bring it on. I also know that if I have a really bad cold my nose gets stuffed up, my breathing then becomes difficult. I know the kinds of foods that make me worse.

So that if I feel an attack is coming on I will go backwards on these foods, wheat-based products I know make me really bad. I eat wheat-based products but if I feel I’m getting to the stage where my asthma’s getting bad I will cut them out. And also dairy based products, if I have a bad cold so that I don’t make too much mucus and, and try and alleviate some of the problems there. I also then start taking calcium too make sure that I’m not losing the calcium I’m getting from the dairy products.

Over time this, this has helped it, it has worked greatly. And I would have to say that I feel my asthma is well under control. I don’t have to use my medication very much. And it generally doesn’t impinge upon my, my life at all. If it does get bad I will go and get steroids to get rid of that particular bout of it, if it’s really bad but most of the time it’s well under control and I’m having minimal use of my inhalers.
 

Jane spent months trying out different inhalers to get things under control.

Jane spent months trying out different inhalers to get things under control.

Age at interview: 59
Sex: Female
Age at diagnosis: 54
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So I started then on a very long journey because as I understand it the way that the, there is a protocol for treating asthma which means that they start with the lowest possible medication and step it up until they find the medication that’s right for you.

So I started with a brown inhaler morning and evening and my blue inhaler. And I then developed what I call my rainbow collection. These inhalers as I understand it have steroids in them and so you have to take them for three or four weeks before they know whether they’re having any effect or not.

So I had my brown inhaler, three or four weeks later I was still not better so I then had a, a pale purple inhaler with a dark purple cap. And the same thing happened. So three or four weeks later I then had a dark purple inhaler with a light purple cap. And three or four weeks later it was still no better. So I then had something that my son always said looked like an ocarina. It was kind of round rather than a long thin inhaler. And that didn’t make any difference either.

So by the autumn I was beginning to feel that I was, I would never be well. I felt like I could never, I, my, I could never breathe properly. And when my asthma was bad it was particularly difficult. I was having time off work and this wasn’t what my perception of asthma had been. My perception of asthma had been that people managed fairly well and then if they have an asthma attack they used a blue inhaler, I’d seen people doing that, and five or ten minutes later they were fine again and they carried on with life. And that’s not how it was for me, I was just having difficulty breathing at some point every day.

Had a very busy lifestyle. Travelled round the country a lot and travelled up to London a lot. And I knew that the air pollution in London was not helping me.

And I knew that at time the, things like the diesel fumes from the trains weren’t, not helping me. And I did go through a point where I wondered whether I ought to give up work because this, this was clearly not doing me any good. And my GP was really helpful. He said, you know, “No, absolutely, we’ve got to get on top of this. And you don’t have to give up work, we have to find a way of controlling your asthma so it fits in with your lifestyle. You don’t have to change your lifestyle, we have to be able to treat this asthma so that you can manage the lifestyle that you’ve always had”. And that was really helpful.
Occasional adult asthma is triggered by something at work. See Andreane’s account of occupational asthma in ‘Asthma in the workplace’.

(Also see  ‘Being diagnosed with asthma’, ‘Early signs and symptoms’, ‘Medication and treatment – inhalers’, ‘Managing asthma – reviews and action plans’, ‘Exercise, diet, weight and lifestyle issues’, ‘Coping and emotions’ and ‘Triggers’).

Last reviewed August 2017.
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