Taking steroid tablets in the long term

Some people with severe asthma need to take higher doses of steroid tablets long term. Here’s what you need to know about the benefits and side effects.

Lots of people with asthma need to take short courses of steroids – known as oral corticosteroids – when their asthma symptoms get worse or to bring down the high levels of inflammation after an asthma attack. But a small number of people with severe asthma have such high levels of inflammation all the time that they need to take higher doses of oral corticosteroid tablets (or sometimes liquids) for months or even years.

Our ultimate guide will help you understand clearly the pros and cons, plus the side effects and how to manage them.

How steroids work

Corticosteroids are copies of hormones your body produces naturally. They help to calm inflamed airways and stop inflammation by blocking the effects of some chemicals your immune system produces. This helps ease asthma symptoms such as breathlessness and coughing, and will also help prevent your lungs reacting to triggers.

You’re already taking these steroids at very low doses through your preventer inhaler. Some people with severe asthma need the higher dose you can get from steroid tablets to reduce the inflammation in their airways enough to tackle symptoms.

Does everyone with severe asthma need long-term steroid tablets?

Not everyone with severe asthma needs to take them. They are most likely to be prescribed for you if:

  • Your asthma isn’t controlled with the maximum doses of a preventer inhaler and other add-on treatments
  • You need more frequent courses for flare-ups than other people with asthma.

Why do I still need my preventer inhaler?

There are two reasons why taking your preventer inhaler as prescribed is key when you’re taking steroid tablets.

  • Research shows that using your preventer inhaler as directed means you’ll be able to take the lowest possible dose of steroid tablets, which reduces your risk of having side effects.
  • Your healthcare professional is more likely to be able to stop your steroid tablets again as soon as possible if you carry on using your preventer inhaler

What dose will I be given?

Your healthcare professional will always try to manage your asthma using the lowest possible dose. Everyone is individual and will need to be prescribed the dose best suited to them. Your healthcare professional will work with you to see how well you can manage your symptoms at lower doses and only increase them if the symptoms are still causing problems.

Will I always have to take steroid tablets?

Even if you have to take steroid tablets for a few weeks or months, this doesn’t mean you’ll always need them – your healthcare professional will work with you to ensure you have the lowest dose that works for you, and will keep checking and adjusting it with the aim of taking you off them altogether, if possible.

Your healthcare professional will consider assessing you for other treatments such as bronchial thermoplasty, Xolair and other medicines in the new group of drugs called monoclonal antibodies (otherwise known as mAbs or biologics). These treatments can stop you needing to take steroid tablets so often, and at such high doses. If your asthma’s controlled, you’ll be gradually taken off the steroid tablets: you should never stop taking them suddenly as your asthma symptoms may get worse.

What’s key is that you keep talking to your healthcare team about your symptoms and what does and doesn’t help, as they may be able to suggest other options.

Steroid side effects explained

Like all medicines, steroid tablets come with a risk of side effects, and some of them may be serious. In a study of 808 people with severe asthma, it was found that 93% of them had one or more condition linked to the use of steroid tablets.

It can be worrying to think about taking medicine that may cause side effects but remember your healthcare professional will only prescribe steroid tablets when they’re essential to stop you having life-threatening asthma attacks and serious symptoms.

You are more likely to have some side effects when you’re on long-term steroid tablets, compared with people who only take a short course when their symptoms get worse. If you take steroid tablets for three months or more continuously, or you have three to four courses a year, you’ll be at higher risk. 

But not everyone who takes long-term steroid tablets experiences serious side effects. Everyone’s different, so just because you’ve read about people having particular side effects, it doesn’t mean you will, too. And you’re unlikely to experience all of the potential side effects.

How to manage the common side effects of long-term steroid tablets

It’s important to know that most of the common ones will stop when you finish taking the tablets. Even if you do get some side effects, there are often ways to reduce them.

Increased appetite

This can lead to weight gain if you end up eating more as a result.

How to manage it

If you think you’re putting on weight, make an appointment with your GP or asthma nurse – they can help direct you to people who can help with managing your weight. You could try the small changes, food swaps and activities plans in the NHS’s Change4Life website for families, or One You for adults. 

Lower resistance to infection

And longer healing time for cuts and wounds. For a small number of people, taking higher doses of steroid tablets lowers the body’s resistance to viruses, such as colds and chickenpox. Some vaccinations aren’t suitable for people taking steroid tablets because lowered immunity can mean they may make you unwell.

How to manage it 

Remind your healthcare professional you take steroid tablets if you’re due any vaccinations.

Washing your hands regularly, getting plenty of sleep and eating a balanced diet can help reduce your chances of catching colds and flu.

Catching chickenpox when you’re taking steroid tablets can cause you to become really unwell. If you come into contact with somebody who has chickenpox, contact your GP or asthma nurse as soon as possible. They may take a blood test to check your immunity to chickenpox. If you aren’t immune, you may be given an injection to protect you.

You should also speak to your GP or asthma nurse if you come into contact with someone who has shingles, if you’ve never had chickenpox, or you’re not sure whether you’ve had it. Shingles is a reactivation of the chickenpox virus and it can’t be caught – but if someone who’s never had chickenpox comes into close contact with shingles, they may catch chickenpox.

A puffy ‘moon face’ and swollen ankles

This is caused by high levels of the hormone cortisol as a result of taking long-term steroid tablets.

How to manage them

Speak to your healthcare professional if this is troubling you. They may be able to help you weigh up the advantages of your treatment against these side effects, or refer you for talking therapy to discuss any effects on how you’re feeling about yourself.

Higher blood pressure

Some people who take a short course of steroid tablets have increased blood pressure.  

How to manage it

Your GP or asthma nurse will tell you if they want to monitor you regularly. Reducing your salt intake, keeping your weight down, eating a diet high in fruit and vegetables and keeping your alcohol intake within safe limits will all help to cut your risk.

Mood swings

Some people feel hyped up and have difficulty sleeping. Others experience low mood, especially if they’re prone to depression.  

How to manage them

Speak to your GP about ways to manage low mood or sleeping problems. They’ll have lots of suggestions, which may include having a regular bedtime routine to help you relax and fall asleep more quickly. They can also refer you for counselling if necessary. For more sleep tips, visit the NHS site.

Stomach ulcers 

You may be put on medicines to reduce your risk.

How to manage them

Smoking raises your risk of stomach ulcers, so if you smoke, quit. While it was once thought that alcohol, spicy foods and stress could cause ulcers, there’s actually little evidence for this – but they may make ulcers worse if you already have them. 

Adrenal insufficiency

Rarely, your adrenal glands may stop working well by themselves. These glands produce various hormones, including adrenaline and cortisol, and are just above your kidneys. This can mean that when you stop taking steroid tablets, your body doesn’t produce enough of its own natural steroids. This can cause symptoms such as weight loss and fatigue. 

How to manage it

In most cases, adrenal insufficiency will correct itself in time. Your doctor will monitor you when you’re taken off steroid tablets, to check whether you’re affected. 

Glaucoma and cataracts

Some people taking steroid tablets experience eye problems such as glaucoma (when your optic nerve becomes damaged due to a build-up of fluid in your eye) and cataracts (when the lens in your eye develops cloudy patches). 

How to manage them

Have regular eye tests and visit an optician or your GP immediately if you have any concerns about your eyesight.

Glaucoma can lead to loss of vision if it isn’t diagnosed and treated early. The treatment will depend on the type of glaucoma you have, but you may be prescribed eye drops to reduce the pressure in your eyes, or sometimes be offered laser treatment or surgery.

If your cataracts aren’t too bad, stronger glasses and brighter reading lights may help for a while. However, because cataracts get worse over time, you’ll eventually need surgery to remove and replace the affected lens.

Thin skin that bruises easily

How to manage it

Treat bruises by cooling the area with a cold compress (a flannel or cloth soaked in cold water) or an ice pack wrapped in a towel, holding it over the area for at least 10 minutes. Do not put the ice pack straight onto your skin as this will be too cold and could be painful. 

If you take steroid tablets for many years, you may be at raised risk of the following:

Weakening of the bones, or osteoporosis 

How to manage it

Your healthcare professional may suggest a bone mineral density scan to assess your risk, and may recommend some supplements or medicine to prevent or treat osteoporosis. Taking regular exercise and having a diet high in calcium-rich foods, such as dairy, dried fruit and leafy green vegetables, can all help to reduce your risk.

Diabetes 

Or worsening of existing type 1 or type 2 diabetes. This is because steroid tablets can affect the way your body controls blood sugar levels. The effect may be reversed once you stop taking steroid tablets.

How to manage it

Keeping to a healthy weight, not smoking, having a balanced diet and being as active as possible can all help to reduce your risk of diabetes– and may help you manage asthma symptoms, too. Your healthcare team can monitor your blood-sugar levels.

If you feel concerned about side effects…

Lots of people taking long-term steroid tablets worry about side effects, so if you’re concerned, you’re not alone. What’s important is that you don’t stop taking them unless you’ve agreed this with your healthcare professional as this can mean your asthma gets worse again, which could result in a potentially life-threatening asthma attack. It’s estimated that a worryingly high percentage of people with severe asthma – 45% – don’t take their steroid tablets as prescribed.

Talk to your healthcare professional about your worries, whether you’ve noticed some side effects or you’re wondering whether you may experience some in the longer term. They may be able to help you manage side effects, or reduce your risk of having them.

It’s also worth remembering that you’ll be kept on the lowest possible dose of steroid tablets to manage your asthma, which will help minimise the chances of having side effects.

If you have any questions or concerns, please call our Helpline on 0300 222 5800 (Monday-Friday, 9am-5pm) to speak to one of our friendly asthma nurses. 

How to worry less

“I’ve come to realise that even though I’m getting side effects from taking steroid tablets, my asthma medicines are keeping me out of hospital so it’s worth it. The side effects don’t outweigh the benefits quite yet and there are ways to get them under control.” – Nichola Duane, 39

It can be really useful to write a pros and cons list to help you see clearly whether the benefits of steroid tablets outweigh the problems for you. Start by making a list of the things that worry you – the cons – for example, weight gain.

Now have a think about the pros. If you find this hard, consider what your child, partner or a friend might say to you. They might say that knowing you’re taking your medicine stops them worrying so much about your asthma. Or they might point out some of the things you can do because your asthma is better managed now. Once you can pinpoint what your particular worries are, you can talk to your GP or asthma nurse to put your mind at rest, or ask them for advice on how to tackle your concerns.

Read our other tips for dealing with concerns about your medicines

Why you need a steroid treatment card

Anyone taking oral steroids or a high dose of inhaled steroids for more than three weeks should be given a steroid treatment card. Small enough to keep in your purse or wallet, this card has room to record the details of your dose and your condition(s).

This is so that if you ever need any medical treatment and you’re not able to communicate (you’re having an asthma attack, for example), the people treating you will know you’re taking steroid tablets and can plan your treatment accordingly.

If you are taking steroid tablets, or high-dose inhaled steroids, for more than three weeks then you should never suddenly stop them.

 

Last updated February 2019

Next review due February 2022