For people with severe asthma, medication forms an important part of their asthma management. People we interviewed talked about the types of medications they were prescribed including inhaled medications, oral steroids, biologicals and other medications. See Overview of Medical Care. Often they had other illnesses as well as asthma, which meant other medications to take in addition to their asthma medications.
Clive is on a new biological medication for severe asthma.
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I’m on a-a drug at the moment which is subcutaneous, once a month, and that actually, I think, helps a bit. It’s one of the drugs that reduces your eosinophils and it reduces the lung inflammation, I think, overall. And so that has allowed me to stay off the prednisolone almost all the time unless I really need to do something that’s really strenuous. That’s- somethings my doctors put in and it, and I think she’s on the right track there. So that kind of- it’s a good one. It’s a good one for me. Not for everybody, I don’t think, but it’s a good one for me. And so that’s been part of my, regular plate at the moment and that kind of, you know, I hope that that stays. The one, you know, I’ll tell you what it is, all right, the mepolizumab, Nucala, and that seems to be holding a lot at bay. A very effective drug. It can be on the…you have to have meet all the parameters for it and it’s quite a stringent, get on the list type of thing, but good on my specialist that she got me on there, and that’s great.
Rachel has arthritis and a history of stroke as well as the asthma.
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So what I do, I take all my medication, because I actually, after my stroke, I’m taking a blood thinner now and an arthritis tablet as well. So I take all my tablets first and then I take my puffer. I’ll have a sip of my tea in between, but the Breo Epilepto or whatever you call it, it says, “Wash your mouth out but don’t swallow it.” Well, I just take a sip of tea, what are you gonna do? But, yeah, after all these years you wonder, “What am I doing with my throat?”
From a medical perspective, effective asthma self-management in adults involves managing medications through keeping to the agreed treatment program, monitoring asthma control, and using of inhaler devices for asthma medicines correctly. [Australian Asthma Handbook]. Reliever inhalers (‘puffers’) are used when people have asthma symptoms, and also prior to exercise in some cases. Preventers are taken regularly, every day, to prevent asthma symptoms and flare-ups, and help soothe the irritation or inflammation inside the lungs. [National Asthma Council]
Michael spoke of the two sides to medication taking ‑ preventative and “as it happens”.
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I’m just thinking well, I have a routine where I get up of a morning and I use my puffers. Before I go to bed I use my puffers, so that’s part of the preventative side of asthma. The dealing with it as it happens, you just feel that because of my job having to talk a lot, I can be aware that I’m starting to breathe more deeply and start gasping for air, rather than breathing more normally. So I think OK, I need my puffer or I start wheezing and that can happen anywhere. It doesn’t… it can be on the train or in a car or just walking. You can just feel yourself start to wheeze and the pressure builds up around the chest. They’re the key signs for me and so I just use the puffer and the puffer cuts through the blockages in the lungs, the inflammation, so you can again breathe more deeply, but when that happens, say I’m out walking, I’ll be a little bit more careful and walk a bit more slowly. Or if I’m at my desk working again, I’ll just stop for a while and I might go get a glass of water or coffee, just to relax.
Ed checks his lung capacity using a peak flow meter.
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I mainly know because, I can, still can, after taking the medication, I still continue to measure my lung capacity, and I’ll watch it increase. If the top of the handwritten chart I maintain shows as a type of breath, the trend on the graph will be like that, upwards. And, that will show a progressive and even if it’s only gradual, increase in lung capacity, as measured from a peak flow meter. Without the ingested or breathed-in compounds, the graph would either flatline or could actually go downhill which is quite worrying.
Because at a low threshold point of say, 350 to 300, as blown through a peak flow meter, I’d need to book myself into hospital.
Over the course of their severe asthma journey, people we interviewed had been prescribed lots of different medications, and often it was a case of trial and error. Although certain medications seemed good on paper, in practise they might not work as well as expected.
Clive ticked all the boxes for some medications but didn’t get any benefit.
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I’m not so impressed with them, and some that are better. You know I’m currently on Seretide and that kind of works for me. And I, and that’s been a good drug. And that’s a good prophylactic for me. I was on Montelukast for some time and we thought that that might help but, I obviously didn’t feel any difference with it. You know I fit all the parameters of people that it might work on, but it’s one of those drugs I think that doesn’t work on every asthmatic. And even though I fit all the parameters, it didn’t really seem to be doing or having a benefit for me.
Leanne was eventually prescribed an older medication.
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So I’m on three different puffers that I’ve got to have through a spacer. And then the fourth one is a funny looking bubble pack thing so yeah that one doesn’t get taken by a spacer. So that’s all changed. So I’ve doubled the amount of puffers I’ve had to take over the years. And I’ve never been on prednisone or Nuelin, the other one I’m on. Never even heard of Nuelin before until I got sick and they put me in hospital. That time they said, ‘right, we’re going to keep you on this.’ What’s that? He said, ‘it’s an older drug for asthmatics. But it’s still quite effective.’ So my specialist put me on that and my asthma nurse looked, she said, ‘what’s he got you on this for?’ She said, ‘it’s quite old.’ I said, ‘yeah well apparently it works.’ She goes, ‘oh fair enough, it’s working I think.’
Establishing and maintaining a routine for asthma medications was seen as important by people we talked to. They found that remembering to take medications was easier in the mornings, and more than one person admitted to sometimes forgetting night-time doses of medication. Although it is vital to keep on top of the asthma, organising and taking medications does take quite a bit of time out of the day. Strategies used by people in the study to correctly take their medications included keeping them all in one place as well as lining them up and counting them.
Marion has several medications to take before she goes to work.
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He likes to get up early, unlike me, and so he gets me up at about six or half past six. I feed him, let him out, I go back to bed. I might take a couple of puffs of Ventolin then, because generally I will take some Ventolin before I do the nebulising. So then, when I get up, I will have breakfast and either before or during breakfast I will take about 13 pills, including vitamins and whatever, depending on what the regime is at the time. Then I would do my 10 to 15 minutes of nebulising, then half an hour on the bed doing my chest therapy. Then I would have a shower and go to work. Maybe, you know, a bit of pottering around doing a bit of gardening or washing or something like that. Then at night after dinner I have another round of pills, smaller, and I have to take the injection for my bones. And when I’m not well I would do another round of nebulising and chest therapy and stuff.
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No thought is better, you just take it in the morning automatically. You’ve got to have a routine. I take, I am embarrassed to say this, I take 12 medications in the morning, and I take five at night, so I have to take them in an order, and I line them up. After I’ve taken them, and I count them to make sure I’ve got them all. So if you- if you’re not really careful, you double up or you.
Effective self-management of asthma in adults also includes having an up-to-date written asthma action plan. People we interviewed talked about the importance of having an action plan to follow if their asthma worsens.
Margie ups the dose if her normal dose is not effective.
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I’ve got an asthma plan. Yeah. So I mean you just take your medication as prescribed, and then if you’re still sick you take… you can up the dose. If you’re still sick, and you’ve got a cold or something, or its weather, you just take a few prednisone for a week or ten days, and that usually makes you better, so start again. And you just go back on whatever dose you were on before, you know, twice daily, whatever you take.
People with severe asthma talked about needing to be organised with medication supply such as having access to relievers wherever they were for the peace of mind.
Regarding travel, there was a range of experiences. Some people we interviewed were practical and explained that they stocked up if travelling to regional areas of Australia where supply might be tricky. Others said they couldn’t travel as they have to have weekly injections.
Allen keeps a stash of Ventolin but also has a back-up plan in case of emergency.
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You keep it in the back of your mind in as much as you know where the Ventolin is, and even if I’m down the back and I haven’t got a Ventolin with me, and I know the asthma’s there, and if the asthma’s not there I don’t panic so much, I don’t worry so much. But if I go down the back, I like to know that I’ve only got to walk to that bench, or the bedroom, and there’s a Ventolin there. And the specialist has told me that, if I run out of Ventolin, or I can’t get me hands on the Ventolin, just to do the same with the Seretide, because it will put it off a little bit until I get help. So I don’t think a lot of people realise they can actually use the Ventolin, the Seretide as well, to get a bit of relief if they haven’t got Ventolin.
They’re the little things that you need to know. What you can do with the Seretide, what you can do with Ventolin, and what… you have that prednisone sitting at… to be used as an emergency. Yeah.
Whilst people we talked to understood the importance of regular use of their asthma medications, side effects were an important consideration affecting self-management. People with severe asthma accepted that steroids were essential for getting the disease under control at times, however they ascribed many different side effects to steroids including weight gain, reflux, moon face, cataracts, diabetes, hair loss, mood changes (both elevated and depressed), bruising, osteoporosis and broken bones. They expressed that the cure was sometimes worse than the disease itself but had to be endured as severe asthma is life threatening. Often there would need to be a medication added to the list to treat the side effects of another medication.
Ed finds steroids affect sleep.
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That’s right. Yup. Even a use of a tablet, a corticosteroid, does produce its own side effects and one of those is negative impact on sleep because your system’s constantly running pedal to the metal and it’s difficult to slow down and sleep. At times I’ve needed to rely on other, tablet form medication to try and nullify that. So you get to the stage where you got a cocktail of, compounds that you’re relying on when you’d rather do without that and just live.
Karen has found steroids interfere with everything.
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side effects from prednisone. Yep. It makes your skin thin, it makes you bruise, it gives you a wonderful shaped face, it gives you, as a woman, hair growth where you don’t want it. It can interfere with your bone density, when you were younger it interfered with your hormones, it can interfere with everything. I’m getting cataracts, terrible reflux, interferes with your sleep pattern. It made me a steroid induced diabetic. I was actually on insulin for 12 months.
Wayne describes how using one medicine results in another.
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And it seems to be every time I take one tablet to fix up and then it’s another side effect, so then that’s another tablet for, for that. That’s why I’m now diabetic. And then I, and then I’ve got sleep apnoea. It just all keeps going round in a circle. And now I’ve got… I used to always have low blood pressure, now I’m on blood pressure tablets because I’m on the high side of normal with blood pressure tablets. So, so it’s just one, one fighting the other. And I don’t know what, what it is. Call it asthma but you know, the medication, everything for asthma isn’t what I’m taking it for.
Medication side effects were not just a problem with steroids. Puffers caused many people with severe asthma to have a very dry throat. Leanne has to take antihistamines regularly because of the biological injections.
Jemma finds the reliever puffers make her shake.
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And the Ventolin makes you shake. I think it’s just those. I mean I don’t know what else the Ventolin does to me. I just know it doesn’t make… I don’t feel well with it. And I find the Atrovent, I really don’t respond to its smell, I think I must be irritated by it. And I can’t think. I mean I was on Spiriva which was with a puncture, you used to puncture a little capsule and breathe in the dust, and it was awful. It used to set me off, I used to have an asthma attack after it because I’d start coughing and then I’d just continue coughing. And so I came off of that and now they’ve come out with a new way of giving it to you which is much better and it doesn’t affect me.
Severe asthma has been quite costly for people we talked to, including the need to have operations due to the side effects of steroids. Medication costs played into decision making for some participants as money spent on medications means it can’t be used for other things.
For
Tony, side effects from steroids have led to a lot of operations and expense.
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My whole life has been controlled by the asthma there. It really has in a lot of ways. A lot of money been spent on operation procedures there too, because of the asthma, because of the prednisone, you know. Because of the side effects. It’s controlled my life, it really has. You’ve got no idea. Plenty of operations there for the eyes. I was paying about $14,000 for this detached retina there. It only covered about $8,000 with the health fund. Out of pocket about $6,000 there, you know. Had both eyes done, and I had the cataracts before that too, you know, before the retinas. They’re very expensive operations, they really are when you start paying for those and all the medication, all the stuff I’m taking now, you know to control things. Because the thyroid doesn’t work, the pituitary doesn’t work, I’ve got to get medication for those, and it’s all because of the prednisone caused by the asthma. It’s controlled my whole life, and you can’t do things.
Justin is on a pension but it’s still difficult.
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The asthma, I’ve got the fine tremor anyway, but that goes full blown with the asthma medication, and other people notice that, and it makes it hard to do some things when it’s really bad.
And it’s just a pain- it’s just a pain, taking all this medications every day, morning and night, and it’s expensive, and I’m lucky I’m on a pension, so that- that makes it cheaper but it’s still relative to my income, and you get sick of it, but then same thing again. It is what it is, if I didn’t have that, I wouldn’t be here so, suck it up.
