Understanding steroids

Steroids are naturally occurring hormones. The steroids produced by the body are called corticosteroids and their actions are very complex. Your body controls the amount of natural corticosteroid it needs to function normally. The adrenal glands produce corticosteroids in small quantities.

Your doctor may prescribe an artificial corticosteroid (steroid medication) to reduce the swelling around your tumour and improve your symptoms. Steroid medications do not treat the tumour. The steroid medication most commonly prescribed to treat such swelling is Dexamethasone.

The steroids used to treat this swelling are different from anabolic steroids, which are used by some athletes to build muscle.

The symptoms that a person with a brain tumour may experience depend upon the position of the tumour in the brain.

Symptoms may include weakness on one side of the body, memory problems or difficulty with speech and language. Symptoms are sometimes worse when there is swelling around the tumour; this swelling is also called cerebral oedema. Cerebral oedema is an accumulation (collection) of fluid in the brain tissue surrounding the tumour. It can occur after any injury to brain tissue. When you have cerebral oedema (swelling), your body requires more corticosteroid than can be produced naturally.

Tumours inside the skull are growing in a confined space. The tumour and cerebral oedema create pressure inside the skull. This can cause you to experience symptoms; often the symptoms will be similar to the ones you had when the tumour was diagnosed.

Some people experience headaches and nausea (feeling sick) this indicates that there may be some swelling around the tumour and pressure inside the skull. Steroid medication reduces cerebral oedema (swelling) and can improve symptoms.

Steroids may be prescribed at different times:

• When you are first admitted to hospital unwell
• When cerebral oedema (swelling) is seen on your brain scan  
• Around the time of surgery - Cerebral oedema can occur at the time of surgery. Steroids may be prescribed before or after surgery. Your steroid dose may be reduced and stopped over a period of days as the swelling reduces after surgery.
• Around the time of Radiotherapy - Radiotherapy treatment can cause cerebral oedema. Steroids may be prescribed during and/or after treatment.
• Around the time of chemotherapy - You may have chemotherapy as part of your initial treatment and/or at a later date if the tumour is growing.
• Any time you are experiencing problems which are thought to be caused by cerebral oedema

The side effects experienced vary from person to person and are usually more noticeable when you are on a higher dose or when you have been taking steroids for a while.

Below is a list of the more common side effects with advice on how to cope with them:

• Problems with sleeping (insomnia) - To reduce the effects of insomnia take your tablets in the morning. If you are prescribed steroids twice a day take them in the morning and early afternoon.
• Increased appetite leading to weight gain - You may experience cravings for sweet food and an increased appetite. Try and stick to a healthy balanced diet, although some weight gain may be unavoidable. Information about healthy eating is available from Macmillan Cancer Support. Ask to see a dietician if you are having difficulties managing your weight. Your appetite should return to normal after steroid treatment.
• Changes in your mood - Steroids can affect your mood. You may feel irritable, agitated, depressed or have mood swings. This should return to normal when the dose is reduced, or steroid treatment finishes. Additional help may be required to deal with these effects, discuss any concerns with your clinical nurse specialist (CNS) or doctor. 
• Irritation of the stomach lining - You may experience heartburn or indigestion. Take your tablets with food or a glass of milk. Additional medication to protect your stomach lining may be prescribed. Tell your CNS or doctor if you are experiencing heartburn or indigestion.
• Increased risk of infection and delayed healing - Steroids can affect your immune system and increase your risk of infection. Oral thrush (fungal infection), urine infections, and chest infections can occur. You should inform your CNS or doctor if you experience:
  • a raised temperature
  • flu-like symptoms
  • delayed healing of cuts or wounds
  • pain or stinging when passing urine
  • persistent cough
  • a sore mouth. Avoid coming into contact with people who have a cold. Inform your CNS or doctor if you think you have been exposed to shingles, measles or chicken pox as additional treatment may be required.
• Muscle weakness in the upper arms and legs (thighs) - You may notice that it is more difficult to perform daily activities such as climbing the stairs or getting out of a chair. Steroids can cause this weakness; it is called ‘proximal myopathy’. It is more likely to be a problem if you have been taking steroids for a number of weeks or months. A physiotherapist can advise you of the types of activity and exercises that help in this situation.
• Changes in the skin including bruising, stretch marks and acne - The side effects of steroids can cause changes in your appearance. If this is causing you distress talk to your CNS, a referral for counselling may be useful.
• Interaction with anti-seizure medication - Anti-seizure medication and steroid medication are often used together, although this can sometimes affect the way the medications work. Your doctor will be monitoring you for any adverse interactions.
• If you are diabetic your blood sugar levels may be affected - You will need to monitor your blood sugar levels closely. Your doctor will make changes to your diabetic medication if needed.
• Fluid retention - If you experience fluid retention (puffiness or swelling) in your legs or a bloated feeling in your stomach, seek advice from your CNS or doctor.
• Increased thirst and frequent urinating - The body regulates sugar levels in the blood using insulin. Steroids can affect your blood sugar level, causing a type of diabetes to develop. The symptoms include increased thirst and passing urine more often; inform your CNS or doctor if this is happening to you. A simple urine test can detect changes in blood sugar levels. It may be possible to control blood sugar levels by altering your diet, ask for advice. Occasionally, medication is required. Blood sugar levels usually return to normal after steroid treatment finishes.
• Interruptions to the menstrual cycle - Your menstrual cycle may become irregular. This usually returns to normal once steroid treatment has finished. It is not advisable to become pregnant when you are taking steroids. Please discuss any concerns regarding contraception or pregnancy with your CNS or doctor. This list contains the more frequently occurring side effects. For additional information, please read the information leaflet provided with the medication and discuss with your pharmacist, doctor or CNS.
• Cushing's syndrome - Cushing's syndrome is a condition caused by having too much of a hormone called cortisol in your body. It mostly affects people who have been taking steroid medicine, especially steroid tablets, for a long time. Steroids contain a synthetic version of cortisol. If you experience Cushing’s syndrome (increased fat on your chest and tummy, but slim arms and legs a build-up of fat on the back of your neck and shoulders, known as a "buffalo hump" or a red, puffy, rounded face), seek advice from your CNS or doctor.

The aim of steroid treatment is to reduce the symptoms of cerebral oedema, using a dose of steroids that will not give you too many side effects. Steroids can be taken over a number of days, weeks or months. You may be prescribed a ‘maintenance dose’ or a ‘reducing dose’ of steroids.

Doses of dexamethasone usually vary between:

0.5 milligrams (mg) and 16 mg per day

Tablets are available in two strengths:

0.5 mg (500 micrograms), 2mg and 4mg

Dexamethasone may be prescribed at different times of the day, for example, at breakfast and lunch time. This is called a ‘divided dose’.

Dexamethasone is usually taken in tablet form; it is also available as an injection or syrup.

Hydrocortisone and prednisolone are other steroid medications that are sometimes used to reduce cerebral oedema (swelling).

Steroid medication should never be stopped suddenly.

Gradually reducing the steroid dose over time allows the adrenal glands to take over the production of natural corticosteroids, which prevents the body from adversely reacting to the withdrawal of artificial steroids. Your doctor and CNS will advise you on steroid reduction.

• Never stop taking steroids suddenly
• Make sure you do not run out of tablets
• Carry your steroid card with you at all times
• Inform your doctor, dentist, pharmacist and nurses that you have been treated with steroids.
• If you are not able to take your tablets due to sickness, inform your CNS or doctor.

When should I ask for advice?

Whenever you have queries, symptoms or concerns.

Who can I ask for advice?

You can ask your CNS, doctor, GP or pharmacist.

Neuro-oncology nurse specialists
Brain Tumour Unit
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG

Direct line: 020 3448 8830
Switchboard: 0845 155 5000 / 020 3456 7890
Email: UCLH.braintumourunit@nhs.net