Understanding steroids

Understanding steroids

A guide for patients with a brain tumour

How can steroids help when you have a brain tumour?

When you have a brain tumour you can develop symptoms. These symptoms depend on the position of the tumour in the brain and 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 a collection of fluid in the brain tissue surrounding the tumour. It can also occur after any injury to brain tissue.

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

Some people have headaches and nausea. This indicates that there may be some swelling around the tumour and pressure inside the skull.

Steroid medication reduces cerebral oedema (this means swelling in the brain) and can improve symptoms.

What are steroids?

Steroids are naturally occurring hormones. The steroids produced by the body are called corticosteroids and their actions are very complex. They are produced in small quantities by the adrenal glands.

Your body controls the amount of natural corticosteroid it needs to function normally.

When you have cerebral oedema, the body needs more corticosteroid that can be produced naturally.

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 cerebral oedema is dexamethasone.

The steroids used to treat cerebral oedema are different from anabolic steroids which are used by some athletes to build muscle.

 

When will steroids be prescribed?

Steroids may be prescribed at different times:

— When cerebral oedema 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 have problems which are thought to be caused by cerebral oedema

 

What are the side effects of steroids?

The side effects experienced vary from person to person. These 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 (I struggle with sleeping)

 

To reduce the effects of difficulty sleeping (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 (I have been happy to eat lots of fruit.)

 

You may have cravings for sweet food and an increased appetite. Try and keep to a healthy balanced diet, although some weight gain may be unavoidable. Information about healthy eating is available from Macmillan.

— 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. You may need additional help to deal with these effects. Discuss any concerns with your specialist nurse or doctor. (I have suffered from massive mood swings – from scary nightmares to uncontrollable giggling)

— Irritation of the stomach lining

 

You may experience heartburn or indigestion. Take your tablets with food or a glass or milk. We may prescribe additional medication to protect your stomach lining. Tell your specialist nurse or doctor if you are experiencing heartburn or indigestion.-(I have been taking a drug every day to protect stomach lining)

— Increased thirst and frequent urinating

(When I need to go, I have to go.  I cannot wait.  Delighted to read this because I did not understand that my need to wee was linked to the steroids.)

 

— 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. The steroids 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. (my jelly legs must be caused by the steroids.  Again, I am delighted to read this.)

— 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 specialist nurse or doctor. (I don’t know about this yet because I menstruated at same time as operation)

— Changes in the skin including bruising, stretch marks and acne

 

The side effects of steroids can cause changes in your appearance. (I have a new acne on my chest and in a couple of parts of my body)

 

Increased risk of infection and delayed healing

 

Steroids can affect your immune system and increase your risk of infection such as oral thrush (fungal infection), urine infections and chest infections. Tell your specialist nurse or doctor if you have:

Ÿ a raised temperature

Ÿ flu-like symptoms

Ÿ delayed healing of cuts or wounds

Ÿ pain or stinging when passing urine

Ÿ persistent cough

Ÿ a sore mouth

 

Avoid coming into contact with people who have a cold or other infection. Tell your specialist nurse or doctor if you think you have been exposed to shingles, measles or chicken pox - as you may need additional treatment. (no problems here)

 

Steroid doses

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. (My dose of steroids has been reduced today to just 2mg in the morning.)