Neuro-Oncology
This leaflet provides guidance on steroid treatment and their potential side effects. The information in this leaflet is a guide only.
What are steroids?
Corticosteroids (steroids) are naturally occurring hormones produced by your body’s adrenal glands. Steroids are vital in helping you to function normally in your daily activities.
When are steroids prescribed?
The symptoms of a brain tumour can be made worse by swelling (oedema) around the tumour. Any swelling within the brain may cause symptoms such as headaches, sickness, epileptic fits or neurological symptoms. Steroids can reduce this swelling and improve some of the symptoms you may be experiencing. Dexamethasone is the name of the steroid most often prescribed to reduce this swelling.
Further medical treatments such as surgery, radiotherapy and chemotherapy (if applicable) can temporarily make swelling worse, and steroids may be prescribed in anticipation to try to prevent this. Please note steroid medications do not treat the tumour.
Possible side effects
Below is a list of some of the side affects you may experience, however please remember that side effects will vary from person to person. The aim is always to use the lowest dose that keeps your symptoms under control.
- Difficulty sleeping
To reduce the effects of difficulty sleeping take your tablets in the morning. If you are prescribed steroids in the mornings and again later in the day, you can take the second dose at lunchtime or early afternoon. - Irritation of the stomach lining
You may experience heartburn or indigestion. Always take steroids with or after food to help reduce the possibility of side effects. You will be prescribed an additional medication to protect your stomach lining. If you have not been prescribed this, please check with your specialist nurse or GP. - Increased appetite
You may experience an increased appetite. Try to eat a healthy and balanced diet, although some weight gain may be unavoidable. - Increased thirst and passing a lot of urine
Steroid treatment may increase the levels of sugar in your blood, which can lead to a type of diabetes. High sugar levels can cause you to feel very thirsty and pass water more often. This is a serious side effect of steroid use. You must inform your GP or specialist nurse if this is happening to you.
If you already have diabetes, you should increase your blood monitoring frequency and inform your GP or diabetic nurse if you have elevated blood sugars as the team may need to make changes to your diabetic medication. - Fluid retention
You may experience fluid retention (puffiness or swelling) in around the face, ankles and feet. In some cases, your doctors may prescribe water tablets to reduce this swelling. This usually settles once you reduce or stop taking the tablets. Walking is a good form of exercise. It’s also helpful to raise your feet when you sit or lie down. - Mood and behaviour changes
If you feel anxious, agitated or low in mood please inform your doctor or specialist nurse. - Muscle weakness
Steroids can sometimes cause a weakness if arms and legs if used over a long period of time. If able, walking is a good form of exercise. - Increased risk of infections and delayed healing
Steroids may affect your immune system and can increase your risk of infection. Avoid coming into contact with people who have a cold or other infection.
Tell your doctor or specialist nurse if you have:
– A raised temperature
– Flu-like symptoms
– Delayed healing of cuts or wounds
– Pain or stinging when passing urine
– Persistent cough
– A sore mouth, discomfort or altered taste whilst eating. - Bone and skin issues
Some people may experience some loss of strength in bones due to long term use of steroids and medication may be required to protect your bones. However, most patients will not be on such long courses. Skin may also become fragile, and you may find you bruise easily. - Interaction with anti-seizure medication
Anti-seizure medication and steroid medication are often used together. However anti-seizure medication can sometimes reduce the effectiveness of steroids. The doctors will review your medications as necessary. - Eye problems
If you suffer from glaucoma or other eye conditions, please inform your ophthalmologist that you are now taking steroids. They may wish to increase the frequency of your eye tests.
Stopping steroids
Please DO NOT stop before seeing medical advice.
Do not stop taking steroids abruptly. If long-term steroids are stopped suddenly withdrawal effects can occur. Usually, the dose is reduced in stages, before you stop taking them. Your clinical team will advise you about steroid reduction.
Additional information about taking steroids
- If you need dental treatment, let your dentist know that you are taking steroids.
- You must always take steroids as prescribed.
- Please inform your specialist nurse or doctor urgently if you think you have been exposed to shingles, measles or chicken pox – as you may need additional treatment.
- Carry your steroid card with you at all times and show it to anyone who treats you (for example a doctor, nurse, pharmacist or dentist). For one year after stopping treatment, you should mention that you have taken steroids. If you forget to take your tablet, do not take a double dose.
Contact us
For further information please contact the Neuro-Oncology Clinical Specialist Nurses. Please leave answerphone message and we will get back to you if your call cannot be answered.
- Telephone: 01642 854347 or 01642 835987
Monday to Friday, 8am until 4pm - Email: [email protected]
Macmillan website: www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/steroids
Patient experience
South Tees Hospitals NHS Foundation Trust would like your feedback. If you wish to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Department who will advise you on how best to do this.
This service is based at The James Cook University Hospital but also covers the Friarage Hospital in Northallerton, our community hospitals and community health services.
To ensure we meet your communication needs please inform the Patient Experience Department of any special requirements, for example; braille or large print.
T: 01642 835964
E: [email protected]