This information explains what steroids are and what we think you may want to know. This does not replace conversations with your doctor, nurse or pharmacist but reading it may help you decide what questions you want to ask.
The most commonly used steroids are Dexamethasone, Prednisolone, Hydrocortisone and Methylprednisolone.
What are steroids and what are they used for?
Steroids are substances that are naturally produced in the body. They can be given by your healthcare practitioner to treat or manage a number of medical conditions. They can also be part of a chemotherapy or other treatment plan. In this situation is important that you consult your usual healthcare practitioner before making any changes to your steroid dose.
Steroids can also be helpfully used in palliative care to assist in managing troublesome issues, such as:
- pain or other problems caused by swelling around a cancer
- feeling or being sick
- as a general tonic to improve appetite and tiredness
The most commonly used steroids in palliative care is dexamethasone. There often needs to be a balance of the benefit of steroids in managing these troublesome issues and any side effects. This can be helped by reducing the dose or where possible using shorter courses. However for some people having steroids longer term can be what is most helpful for their individual needs. Your healthcare practitioner will discuss this with you.
How are steroids taken?
You usually have steroids as tablets or liquids that you swallow, they are also available as an injection. Ideally take them early in the day e.g. morning as they can affect sleep if taken later.
The dose you have and how long you have the treatment for depends on the reason you are taking steroids. It is important to make sure you know how long you need to take them for.
Things to remember about steroid tablets
- It is important to take them exactly as your healthcare professional advises
- Do not stop taking them suddenly
- Tell your healthcare practitioner if you are sick just after taking a tablet, as you may need to take another one
- If you forget to take your tablet, do not take a double dose. Ask your doctor or nurse for advice
- Keep the tablets in a safe place and out of the sight and reach of children
- If your doctor decides to stop the treatment, return any remaining tablets to the pharmacist. Do not flush them down the toilet or throw them away
If you are taking high dose steroids or steroids for 3 weeks or more- you should be given a steroid card. You should always carry this card and alert any healthcare professionals to this.
This is so that in an emergency, or if you are having other treatment prescribed or planned, a healthcare practitioner will know that you are also taking steroids. This is important as taking steroids may have affected the ability of the body to produce its own natural steroids. Therefore the ability of the body to quickly produce more natural steroids could be reduced. This may needed if there is additional stress such as having an accident, serious illness or operation. In these situations your doctor may prescribe more or different steroids.
This is why if the dose is being reduced, you are usually advised to reduce the dose gradually to allow the body to start to produce natural steroids again. It also reduces the chance of any withdrawal effects
Possible side effects
Tummy pain or indigestion
Steroids can irritate the stomach lining. Let your nurse or doctor know if you have indigestion or pain in your tummy. They can prescribe drugs to help reduce stomach irritation or review the dose you are taking. You should take your tablets with food to help protect your stomach.
Raised blood sugar levels
Steroids can raise your blood sugar levels. Symptoms of raised blood sugar include: feeling thirsty, needing to pass urine more often, feeling tired. Tell your doctor or nurse if you have these symptoms as they may need to check your blood sugar. If you have diabetes, your blood sugar levels may be higher than usual. Your doctor can talk to you about this. They may adjust your insulin or tablet dose and advise you to check your blood sugars more regularly.
Fluid build-up
You may gain weight, or your face, ankles and legs may swell. This will often improve gradually after your treatment has finished. Your doctor may give you drugs to help reduce the swelling.
Increased appetite
Steroids can make you feel hungrier than usual and you may gain weight. Your appetite will go back to normal when you stop taking them. If you are worried about gaining weight, talk to your doctor or nurse.
Increased risk of infection
If you are taking high-dose steroids, or having steroids and chemotherapy at the same time, you may have an increased risk of infection. Tell your doctor if you notice signs of infection. This can include a cough, a sore throat or a temperature above 37.5°C. There are things you can do to help reduce the risk of getting an infection. These include:
- washing your hands thoroughly before eating, and after using the toilet
- avoiding people with an infection, such as a cold
- avoiding crowds or public places where there is a risk of getting an infection
Mood and behaviour changes
Steroids can affect your mood and behaviour. They can cause:
- feelings of anxiety or restlessness
- mood swings (moods that go up and down)
- low mood or depression
Sometimes, when taken in higher doses, steroids can cause confusion or changes in thinking. This can include having strange or frightening thoughts. Tell your doctor or nurse if you notice any changes in your mood or behaviour. They may make some changes to your treatment if the side effects are causing you problems.
Difficulty sleeping
Some people find it more difficult to sleep while taking steroids. Taking your steroids in the morning may help. If you take steroids twice daily, you could take them in the morning and early afternoon.
Muscle weakness
With long term use the larger muscles in the tops of your arms or legs can become weaker. This is reduced by trying to keep the dose as low as possible or if needed gradually stop the steroids. Speak to your healthcare professional if you have any concerns
Other potential side effects include: Changes to your periods (irregular or stop whilst on steroids), eye changes (red inflamed eye, blurred vision), changes to your appearance (acne, puffy face), bone thinning. These side effects are usually associated with long term use.
It is important to tell your healthcare professional of any side-effects you develop. They can then review your situation and advise further.
Confidentiality
‘The Trust’s vision is to keep your information safe in our hands.’ We promise to use your information fairly and legally, and in-line with local and national policies. You have a right to understand how your information is used and you can request a copy of the information we hold about you at any time.
For further information on confidentiality contact the Information Governance Team:
Information.Governance@ncic.nhs.uk | 01228 603961
Feedback
We appreciate and encourage feedback, which helps us to improve our services. If you have any comments, compliments or concerns to make about your care, please contact the Patient, Advice & Liaison Service:
pals@ncic.nhs.uk | 01228 814008 or 01946 523818
If you would like to raise a complaint regarding your care, please contact the Complaints Department:
complaints@ncic.nhs.uk | 01228 936302