Asthma

Changing symptoms over time

Asthma is a long-term condition. This means that it usually doesn’t go away, but using the correct medication can control symptoms very effectively. Sometimes children with asthma can ‘grow out of it’ but this is not always the case. In others there may be significant periods of time when they are symptom free, especially if the asthma is well managed.

Jan’s childhood asthma improved when she was a teenager and she thought maybe she was growing out of it, but a few years later symptoms reappeared. Over time she says some of her triggers have changed

Jan’s childhood asthma improved when she was a teenager and she thought maybe she was growing out of it, but a few years later symptoms reappeared. Over time she says some of her triggers have changed

Age at interview: 46
Sex: Female
Age at diagnosis: 4
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As I child, I think I remember about the age of 15, my symptoms got a lot better, and actually optimistically I thought oh I’m growing out of it, and probably for about ten years very few symptoms. And then it came back with a vengeance in my mid twenties.

I personally think the trigger at that stage, I worked on [place name], so lots of smog, bus fumes and I think that was certainly the trigger for my asthma in, in my mid twenties. I had quite a few years of being ill and a few hospital admissions, but pretty much got it under control in my early thirties.

Since then it seems to be this Autumn to Winter that seems to be the trigger. So for instance this weekend hasn’t been a good weekend for me. I was around actually, I went to a party in a farm and there was lots of hay around and I think that was the trigger, but certainly the cold is, isn’t helping as well.

So I think that’s one of the interesting things about my asthma, its different things that trigger it now.

Faisil describes how his asthma symptoms have come and gone at different times of his life.

Faisil describes how his asthma symptoms have come and gone at different times of his life.

Age at interview: 33
Sex: Male
Age at diagnosis: 3
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As a child it was actually quite bad. I mean my Mum was, my Mum said that you were sort of looking at it was almost like a regular thing of asthma attacks. So I remember going to hospital quite a lot, and seeing a specialist there and bits of it in and out of A & E quite a bit. Emergency doctors being called out so up until I was about may be starting primary school it was almost a regular thing.

As I got older obviously it sort of gets better, up until I was about ten, I was quite sort of unsettled, so it was a lot of medication, a lot of trips to the doctors. After I was ten, sort of becoming a teenager things started to improve after that. I noticed the symptoms a lot less. I found it easier to do things like sports, which I struggled to do at primary school for example. Things seemed to be quite settled throughout most of my teens into my twenties and stuff. Then I sorted of noticed things getting a bit bad again after sort of about five or six years ago. I moved from [city] to [city] and I don’t know if it was the amount of pollution in the air or something, but it started becoming quite unsettled in the last couple of years again.
Others also described the way their symptoms had changed over time. For some people, using the correct medication regularly meant that they now no longer, or rarely, experienced symptoms. Dee is frightened of having another serious asthma attack. So tries hard to keep her asthma well controlled. She said she can go for years now without needing to use her reliever inhaler and sometimes she forgets she has asthma. 

Some people noticed that their asthma improved for periods of time, but they had occasionally had flare ups, for example when they got a cold or chest infection or if they came into contact with known triggers, such as pollen. Sometimes people may discover a new trigger or react to something that has not bothered them before. Eve said it can sometimes "catch you out".

Eve can go for several months without her asthma bothering her and then she may get several ‘flare up’s’ especially if she gets a cold or chest infection. [AUDIO ONLY]

Eve can go for several months without her asthma bothering her and then she may get several ‘flare up’s’ especially if she gets a cold or chest infection. [AUDIO ONLY]

Age at interview: 54
Sex: Female
Age at diagnosis: 36
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So on a day to day basis, how much does your asthma impact on your life would you say?

When I’m not having a flare up it doesn’t a lot.

So how often would you say you have… even if it was a more minor flare up say?

Well I can go through several months without a flare-up and then I can have two or three within a couple of months It just, you just never know when it’s going to do that. I think that’s the problem you don’t know, you don’t. It catches you out.

I would love to sing in a choir. I used to sing when I was younger and I can’t because I don’t know from one, you know, one month to the next whether my breathing’s going to behave or not. I don’t feel I would be reliable enough, if that makes sense.
Margaret feels well most of the time but there can be times when she feels her asthma is starting to flare up and over the course of a couple of days it can get steadily worse. Usually she can calm things down by increasing her inhaler dose for a time. Alastair who has mild asthma said that although the perception of asthma is that of someone not being able to breathe at all, in his case it will gradually worsen to the point of being uncomfortable and when he uses his inhaler it stops it almost immediately. Alastair’s asthma is generally only triggered during the hay fever season. Charles said, "It’s been probably better since it was originally diagnosed, and I think that’s possibly due to the preventative treatment of Becotide …. I very seldom have the need to take Ventolin".

Usually Peter’s asthma is successfully controlled and there is little impact on his life, but during the course of a year he may get a few weeks when it flares up.

Usually Peter’s asthma is successfully controlled and there is little impact on his life, but during the course of a year he may get a few weeks when it flares up.

Age at interview: 62
Sex: Male
Age at diagnosis: 45
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Overall to what extent would you say asthma interferes with your life?

Yes, well a lot of the time it doesn’t. It’s successfully controlled by medication. For at least a few weeks of the year it has a, it has a definite impact on me, yes.

And at those times do you just… you know, can you not go out and walk or … what sort of things are you prevented from doing?

It would stop my exercise, you know, walking, swimming, biking, all of which I do some of. And it will stop me enjoying life, you know, you’re ill. To the point where well you really can’t do much can you. You run out of breath, you can’t even maintain a conversation. Now fortunately for me that doesn’t happen more than two or three weeks a year other than at one ten week period when I was really quite poorly last a little while ago. But yes, so at those times it does have an effect on you.
Sometimes people’s asthma had seemed to gradually worsen as they got older. That doesn’t necessarily mean they get symptoms all the time, but that when it does flare up it can be more severe. When Esther was first diagnosed with asthma in her 20’s she experienced occasional wheeziness, but she says it got progressively worse over time and began to be triggered more frequently by cold weather or if she exerted herself too much.

Mary has had asthma all her life and it has got progressively worse but she says modern day treatments are much more effective than in the early days.

Mary has had asthma all her life and it has got progressively worse but she says modern day treatments are much more effective than in the early days.

Age at interview: 73
Sex: Female
Age at diagnosis: 6
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I’ve had just about every different kind of asthma. I was very allergic as a child, then it became gradually more chronic over the years, but I’ve had brittle asthma at times, and I’ve now got chronic severe asthma.

So over the years since the inhalers came into being, you’ve had a variety of different ones I assume?

Yes. Most of them [laughs].

Right and so is that trying out new ones and seeing, or adjusting dosages?

Getting stronger ones, they’re much stronger than they ever were now. They’re about five or six times stronger than when they first came out. And they work in different ways. So get into different parts of the lungs. Some of them you can use in a spacer and some of them are breath activated. So it depends how you are and when you are what kind of ones you need, and nowadays they bring out combination inhalers, which have got the kind of long acting Ventolin in them and steroids. And they have helped quite a lot.

And so I mean, whilst you’re trying out something new, is there a kind of period when you’re sure whether it’s actually going to do the trick or not, or is it a question of putting you on a certain dose and then adjusting it slowly to make…?

It’s more or less putting you onto the new inhaler, which is usually stronger. I’ve never gone backwards as it were, so I don’t really know. I take more or less depending on how I am.

And does it make a difference. Can you tell a difference when you try a different new one?

Oh yes, all my friends can tell the difference, which, what drugs and inhalers I’m on.

Can they? What sort of difference?

Well because I’m breathless most of the time now. If you’ve had asthma for a long time you get, when there weren’t treatments for it, you get chronic changes to the lung, and it’s a bit like chronic lung disease but without the progressive aspect of it. So I’ve got collapse in my lungs, bits of it where I’ve had chest infections over the years, but it doesn’t progress in the same way as somebody who’s got COPD would. So if people nowadays take their inhalers and medications they shouldn’t get to that state. Because the better your lungs are the less infections you get.

So, do you think if you had been born a different time, later on, that you wouldn’t be as chronic as you are now?

Oh I’m sure. Yes.

So it’s more to do with the fact that you had the early days when you were really receiving any treatment?

Well there wasn’t really any treatment, yes.

Right.

Well you know there wasn’t the effective treatments.

Jenny explains how her asthma has changed and become worse over time. She has developed severe brittle asthma which has restricted her life considerably, but she says most people don’t experience such extreme symptoms.

Jenny explains how her asthma has changed and become worse over time. She has developed severe brittle asthma which has restricted her life considerably, but she says most people don’t experience such extreme symptoms.

Age at interview: 34
Sex: Female
Age at diagnosis: 18
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Over the years, you know, I had occasionally got a bit, had a bit of flare up and would have to have steroids and, you know, just small doses and things. And then it all changed. Well I was about 27; I was gardening and I stubbed my foot on a rose bush, didn’t think anything of it, got an infection in my foot and was on antibiotics – that cleared up – and then a couple of weeks later, I had started like getting these really sort of short of breath and what have you, and it turns out that I’d got pneumonia from the same bug that I’d had in my foot had gone up to my lung, caused me to have pneumonia. I went because I’d been at work and I went to my GP and was a bit short of breath and she sat me down and then sort of listened to my chest and sent me off to hospital. That was the beginning of, well I could be cynical and say the beginning of the end, but since then my lungs have just gradually got worse.

I’ve been in [coughs] intensive care, high dependency numerable times with my asthma, I’m now on so much different medication, I had to… when I… I worked until four years ago and I worked full-time and then I worked part-time, then I worked very part-time and the HR department at work came to me and said, “Look, you’re spending more time in hospital than you are at work, you know, this really isn’t working”. So, I was retired at the age of 30; I have a pension. So at the minute, I don’t work because of it, I moved house or moved areas four years ago with the idea that maybe a different area would help or, you know, try anything. I’ve not been brilliant the last few years ; last year I had nine emergency admissions, you know, blue light ambulance jobs… because I have, I don’t have what – I don’t have simple asthma, I have what’s called severe brittle asthma, which means I go from being perfectly well to terrible in a matter of hours, or I can do. I sort of – I can either do that, where I’m fine and then something will trigger of and then I will just go or it will build over a couple of days and I will sort of try and catch it with all my different rescue medications and things and then I can’t catch it then… but once it goes, it suddenly goes and that’s it. But that’s not what all asthmatics do and so I don’t want to frighten all asthmatics and say, you know, you’re all going to end up going blue round the edges because you’re not, but it’s just what I do.

Now I take 19 different medications a day. Some are for the side-effects of the other ones. I have an… allied? - whatever - a condition alongside my asthma called secondary adrenal insufficiency, which basically means my adrenal glands no longer function because I have had so many steroids. So I have a bizarre combination of two conditions called Addison’s and Cushing’s. When I’m well, like now, I get the Cushing’s symptoms which are the very puffy face, I get very sweaty, I get very hot, I get excess hair on your arms and things, but as soon as I’m unwell, I go the opposite way and I get the Addison’s which means your blood pressure drops, you go slightly doolally, you get de-hydrated, it’s all because of the steroids I take. But if I didn’t take the steroids I wouldn’t breathe so I wouldn’t be here anyway. 

Melissa worries that her asthma could get worse in the future but at the moment she is happy that she is managing her symptoms well.

Melissa worries that her asthma could get worse in the future but at the moment she is happy that she is managing her symptoms well.

Age at interview: 37
Sex: Female
Age at diagnosis: 16
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I always worry that it will get worse. Always. Because I’ve always had bouts where it’s been really good and then it got worse, and then it’s got better and then it got worse. So I’ve always had bouts of it changing. But yes, I always think oh you know, it could come a time when it’s going to get worse. So yes, I’m always worried that there’s going to be a time when I’m going to wake up and it is going to be worse again. But at the moment it’s not, and I’m doing well. So I just…

Keep going?

…live for the moment I suppose and say, “Yes, it’s good today. So we’ll go with today.” And if there comes a time when I need more medication then I’ll go back on the stronger medication, but I’m just enjoying not being on the stronger medication at the moment.

Eve has noticed that her asthma has become worse over the years. [AUDIO ONLY]

Eve has noticed that her asthma has become worse over the years. [AUDIO ONLY]

Age at interview: 54
Sex: Female
Age at diagnosis: 36
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Overall would you say, how would you describe how, how well you manage your own asthma symptoms?

I think I manage them pretty well. I just get frustrated sometimes when, when there’s a lot of flare-ups. I get frustrated. But there’s not always anything I can do about that. It’s just... more things get added to the allergy list. And...

And that puts more limitations on your…

Sorry.

That puts more limitations on your lifestyle I suppose?

Yes. I mean I remember hearing that if you become a, if you’re like diagnosed as an adult, if you pick up, if you become asthmatic as an adult, you tend, your asthma tends to get worse over the years, and I’ve noticed that with mine. It is getting worse over the years. And I keep hoping it won’t do that, but it is doing that.

So what do you feel about your future with asthma? Have you got any kind of feelings about it?

Well I’m just going to have to keep fighting it or working with it, or whatever I’m doing. I it’s not going to go away, but I am going to do the best I can to control it. Keep it under control and I know you have to take your medication.
Some of the younger people we talked to wondered whether their asthma would become worse as they got older. Nicola asked the asthma nurse but was told it’s difficult to predict; she has decided to take things as they come and not worry too much about it. Similarly Tomas feels it’s best to concentrate on managing it as it is now and not to think about what may happen in the future.

Nicola asked the nurse what the outlook for the future might be but was told it’s difficult to predict. ‘You have to deal with it and if it gets worse there’s nothing I can do about it so. There’s probably no point in worrying about it.’

Nicola asked the nurse what the outlook for the future might be but was told it’s difficult to predict. ‘You have to deal with it and if it gets worse there’s nothing I can do about it so. There’s probably no point in worrying about it.’

Age at interview: 24
Sex: Female
Age at diagnosis: 7
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You said that you asked the nurse whether your symptoms or your asthma will get better and of course they couldn’t tell you about it. Did they, do you sometimes think that it might get worse or does that thought scare you or?

I think. I don’t know I don’t really think about it too much but I think it probably.

I should imagine it will stay about the same. It has got worse as time’s gone on but it’s been about the same level for a few years now. I don’t think it will ever go away though because I’ve had it for so long. I don’t know I mean hopefully it won’t get worse and if it does it probably would scare me a bit but, but yeah as I said I don’t, I don’t really think that far ahead about when it comes to asthma.

So you look at it from the perspective of, I have it I have to deal with it?

Yeah exactly. You have to deal with it and if it gets worse there’s nothing I can do about it so [laugh]. There’s probably no point in worrying about it.
Even when people have a good understanding of how to change the dose of their medication or how often they take it, they may still need to re-visit the GP or nurse to have their medication reviewed or fine- tuned. After a time of using an inhaler that has worked well symptoms sometimes start to reappear, suggesting it might be time to change medication.

Susan manages her asthma well generally but there have been times where she has had flu or a bad chest infection and she has had to make several visits to see the GP or nurse in order to get things back under control. [AUDIO ONLY]

Susan manages her asthma well generally but there have been times where she has had flu or a bad chest infection and she has had to make several visits to see the GP or nurse in order to get things back under control. [AUDIO ONLY]

Age at interview: 31
Sex: Female
Age at diagnosis: 18
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I’ve had flu, I’ve had flu a couple of times and that really messes it up horribly because it’s just, because obviously, you know, your breathing’s affected by flu anyway…and then on top of that any infection will spark off my asthma and then on top of that, you know, I’m stressed and I’m not, not very well in general and that will make my asthma worse. And so it really can go downhill quite badly and a couple of times because of that I’ve had to have steroid tablets or I’ve got an infection on top of something, it’s like an infection where I need antibiotics. And so then you can end up like going back and going back and going back because, you know, you went back and they said, “Oh well, let’s see how it goes”. And then it got worse, so you went back and they said, “Right, OK, let’s give you some antibiotics and some steroids”. And then you take those and you think, “Well it’s definitely getting better but I still can’t breathe properly”. So you go back again and they give you maybe, they say, “Oh well, it sounds like the antibiotics have worked but your, but your asthma’s still bad so give you some more steroids”. And then, and you kind of keep going back every week for, you know, maybe three or four weeks and then eventually they say, “Right, OK, let’s see how this goes”. And it kind of stabilises. But it can feel a bit like you’re bothering them [laughs]I mean, I, they don’t, they don’t make it feel like that but it can feel like, back to the doctor’s again.

So would you normally like, if you have, were going through a period like that where it was all a bit up and down, would you normally make the appointment to see the GP or would you go in and out to see the asthma nurse?

It depends. The asthma nurses usually can’t do the, if you think you’ve got a chest infection it’s usually better to go to the GP because the asthma nurses will usually refer you to them anyway. If you go and see the asthma nurse and the asthma nurse thinks you’ve got a chest infection she’ll usually get the GP to look at you anyway.

So often I just go straight to the GP or I’d have a phone consultation with the GP. And then, that’s often what I do actually, is I ring them up and say, “Can I have a phone consultation?” 

Melissa found that after a time her inhalers weren’t working so well. The GP prescribed different ones which controlled her asthma more effectively.

Melissa found that after a time her inhalers weren’t working so well. The GP prescribed different ones which controlled her asthma more effectively.

Age at interview: 37
Sex: Female
Age at diagnosis: 16
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So it was easing it, but it wasn’t controlling it and I was still having really, really bad periods of getting out of breath and I could take the blue one and it would calm it down and it would bring it back to normal but as soon as I started doing anything it would just play up, flare up again. So yes, that’s why I went back to the doctor and I said to him, and they said, “Oh that’s because the inhalers aren’t right for you. We need to change them.” And I was like, “Oh no, please not again. That means I’ve got to get used to a whole new, you know, strength, and is that going to make a difference and, and I was told by the doctor that it shouldn’t because I was already on them.

So and that was when I went onto the stronger inhalers. But then after a little while again, they stopped working, so I ended up having to go on even stronger inhalers and I ended up on instead of a brown one, a purple one and a blue one and I was on the purple one and blue one for years. And it worked fantastically.

And then obviously five years ago or so I ended up having to have them changed again, because they weren’t really working. So I ended up on the purple one. I ended up on a green one which was Serevent and then I ended up on Ventolin as well and the Serevent.
A personal action plan helps people to vary their medication within agreed limits to gain better control when symptoms return. Some people find that they can manage changes just by using a plan that they have discussed in advance with the GP or asthma nurse. An ‘Asthma plan’ is intended to help people to know what to do to manage their condition and when they should seek further help.

Susan has had several changes of medication over the years. She has periods when her asthma is well controlled but at times it has got worse and the GP has given her different inhalers to try. [AUDIO ONLY]

Susan has had several changes of medication over the years. She has periods when her asthma is well controlled but at times it has got worse and the GP has given her different inhalers to try. [AUDIO ONLY]

Age at interview: 31
Sex: Female
Age at diagnosis: 18
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So I had hay fever. I was diagnosed with when I just finishing primary school, just starting secondary school. And then about a year after that I was having hay fever kind of breathless kind of symptoms all the year through so mum took me back to the GP and they said actually as well as hay fever you’ve got asthma now as well. And at that time I just had the blue inhaler, the reliever. And I didn’t use it hugely. I only really had to use it when I doing sport at school. And the reliever they gave me the first time, it worked but it made me dizzy at the same time.

So after a little while they switched me to another one which didn’t make me dizzy. But occasionally I would only have the old one with me and then I kind of rather than taking my inhaler and carrying on with sport, I’d have to take my inhaler and then sit down because although I could breathe again, I couldn’t stand up safely [laughs].

Like you’re disorientated.

But... so I only had the blue inhaler for quite few years, about five years. And then I started having to use it more. And that was when they started giving me the, the regular brown inhaler, to prevent the attacks and that works really well. And then that was pretty sable for awhile. And then when I was doing my A-levels I got a really bad chest infection. And I don’t know what happened but it didn’t look quite like a chest infection to the doctors and so they didn’t know what was wrong with me for weeks and weeks. And I was just off, off school because I was so ill. But they couldn’t work out what it was because it didn’t sound like a chest infection when they listened to it.

And then after a certain point it obviously did sound like it and they were, yet they gave me antibiotics and that cleared it all up. But after that I had to have another inhaler as well so like the, the green one which they give you, you have it every day as well as the blue one, as well as the brown one. And then that worked really well for another few years. And then a few years I had a really bad period where even though I was taking all the medications that had used to worked, I still was needing my blue inhaler all the time. And I had to basically use it just to walk across town which was really, was really frustrating... because I cycle everywhere and I couldn’t cycle at all. And when I saw the asthma nurse she said, “Oh it’s you know you’ve got a bit worse again.” And they gave me a tablet as well then which is not a steroid, it damps down the immune system a bit so that you don’t react as much to allergic triggers. Because I already had hay fever and eczema she said, “Well you’ve probably got some allergic component to your asthma so this one might work.” Because she said, ‘It, in some people it works really well and in some people it’s completely, it doesn’t do anything.’ So just kind of like fingers crossed will it work for me? But it was really, really good.

And so I still take all of those. So I have the, the three inhalers and the tablets [laughs]. But it does work so I don’t have to take very much else. And I don’t use my blue inhaler unless I’m ill. And it’s a bit of a pain taking them all but at least you don’t have to worry about anything. Yeah so that’s kind of where we are now.
(Also see ‘Triggers’, ‘Medication – inhalers’ and ‘Managing asthma –reviews and action plans’).

Last reviewed August 2017.
 

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