Living with a brain tumour: Taking steroids

This leaflet aims to answer commonly asked questions about steroids and explains how steroids are used to help people living with a brain tumour.

What are steroids?

Corticosteroids (steroids) are a natural hormone produced by your body’s adrenal glands. Steroids are vital in helping you to function normally in your daily activities. In people living with a brain tumour, additional steroids are often prescribed in tablet form. They help to reduce the swelling (oedema) and inflammation sometimes caused by brain tumours. This is known as an anti-inflammatory effect.

Why do I need to take steroids?

Oedema is one of the body’s natural responses to disease. If a tumour develops in the brain it is usually surrounded by oedema, which acts as a form of protective barrier in between the tumour and brain tissue.

As there is limited space inside the skull, too much oedema will lead to increased pressure in the brain. This in turn can cause symptoms such as headaches, nausea/vomiting, drowsiness, weakness down one side, speech and language problems or even fits (seizures). These symptoms can be severe and a serious threat to your health if left untreated.

Dexamethasone is the name of the steroid most often prescribed to reduce this swelling.

Will steroids shrink my tumour?

No - steroids do not treat or shrink your tumour itself but they may help to reduce the symptoms caused by the brain tumour and subsequent oedema. Some people make significant improvements whilst taking these tablets, many of their symptoms may resolve completely.

Steroids will not stop your tumour from growing. Eventually the effects of the steroids will reduce if the tumour grows too big. Steroids will not replace any surgical interventions which may be required in this case.

When are steroids prescribed?

Steroids may be prescribed if there is evidence of swelling in the brain caused by a brain tumour. Evidence of swelling can be seen on the CT (computerised tomography) or MRI (magnetic resonance imaging) scans which you will have had undertaken. The severity of your swelling dictates how much dexamethasone you will be prescribed.

Further medical treatments such as surgery, radiotherapy and chemotherapy (if applicable) can make swelling worse and steroids may be prescribed in anticipation to try to prevent this. Your doctor/ key worker (specialist nurse) will discuss these options with you should they be required. For the purposes of this document, your key worker is your specialist nurse.

Are there any side effects?

The doses of dexamethasone used to control your symptoms are much larger than the normal level of steroid occurring naturally in your body. Everyone’s body is unique and a person’s response to any drug cannot be precisely predicted. Our aim is always to use the lowest dose that keeps your symptoms under control. The most common side effects are listed here:

• Stomach irritation
  o You will be prescribed an additional tablet to protect your stomach from acid for the duration of the time you take steroids. If you have not been prescribed this, please check with your GP or specialist nurse.
• Difficulty sleeping
  o If you are prescribed dexamethasone in the mornings and again in later in the day, you can take the second dose at lunchtime / early afternoon. This may help you sleep better at night.
• Increased appetite
• Increased thirst/ passing a lot of urine
  o Temporary increase in your blood sugar leading to sugar in your urine (diabetes). This is a serious side effect of steroid use. You must inform your GP immediately if you think you may be developing symptoms of diabetes. If you already have diabetes, you should increase your blood monitoring frequency and inform your GP if you have persistently elevated blood sugars.
• Mood and behaviour changes
• Oral thrush
  o If your tongue has a white coating, or if you have altered taste/ discomfort when eating, you may have developed oral thrush. This is very easily treated via your GP.
• Increased risk of infections and delayed healing
• Acne
• Increased risk of bruising
• Flushing and night sweats
• Muscle wasting and weakness if used over a long period of time
• Bone problems, when taken over a long period of time additional medication may be required to protect your bones. Most patients will not be on such long courses.
• 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.

Side effects generally disappear once the dose is reduced or stopped. However, you must never reduce your steroid dose on your own accord in order to minimise any potential side effects. You must always take the dexamethasone as prescribed. Please contact your doctor or specialist nurse if you are worried about any of your side effects.

Stopping steroids

Dexamethasone reduces your body’s production of its own natural corticosteroids. As a result, it can be dangerous to stop taking steroids suddenly. The frequency and dose will need to be cut down gradually, so that it encourages your own body’s production of steroids to re-start.

Usually we try and reduce your Dexamethasone dose by one tablet (2mg) every three to five days. We aim to reduce your afternoon dose first. However, everyone is different and the rate at which your steroids are reduced depends on the type of surgery you have had (if any), the size/location of your tumour and any further treatment planned.

Discharge summaries – medication list

Prior to discharge from hospital, you should be given a copy of your discharge summary. This will include a weaning regime (reducing plan) for your dexamethasone tablets. Please contact your neurosurgical ward or specialist nurse if you have not been issued a copy of your discharge summary. You should follow the weaning regime which has been specifically designed to meet your individual needs.

Below is an explanation of the medical terminology found on your discharge summary. It may help you to better understand the abbreviations used and how/ when to reduce your steroid dose:

• Dose – this is the total amount to be taken at any one time.
• Frequency – how many times a day you take your stated dose.
• Mg – this stands for milligrams. This is the strength of your dose. Each dexamethasone tablet usually contains 2mg (please check your tablet box).
• OD – once daily. You will take your dexamethasone dose once daily in the morning only.
• BD – twice (Bi) daily. You will take your dexamethasone dose once in the morning and again at lunchtime/ early afternoon.

Example: Dexamethasone 4mg twice daily.

• Your dose is 4mg.
• This dose should be taken twice daily. = morning and lunchtime/ early afternoon.
• Each dexamethasone tablet (usually) contains 2mg.
• You should therefore take 2x2mg tablets in the morning and again 2x2mg tablets at lunchtime/ early afternoon.

Your discharge summary should routinely state the number of days you are to take a specified dose and the date in which the dose is due to reduce. The clinical pharmacist will routinely review the discharge summary and ensure this reducing regimen is clear.

If you have any questions about your reducing regimen, please contact your specialist nurse.

Minimum dose for biopsies and debulking

You should not stop your steroids completely until advised to do so by either your neurosurgeon or, in the event of further treatment – your oncologist.

If you have had a resection/ debulking procedure, we usually like you to remain on a minimum dose of 2mg dexamethasone once daily. For biopsies, this would be slightly increased to 4mg once daily.

The above is an average estimate only, so please follow the prescription on your discharge summary or contact your specialist nurse for advice if you have any questions about how and when to reduce your steroids, or if you are experiencing any of the side effects mentioned earlier. You will find all relevant numbers at the end of this booklet.

Repeat prescriptions

Your GP will have been sent a copy of your discharge summary, including the list of medication you were prescribed on discharge from hospital. They will continue to prescribe all your medication, so please ensure you inform them if you need any repeat prescriptions.

Please ensure they are given plenty of notice to arrange any repeat prescriptions. If you run out of steroids you must inform your GP immediately as you should not stop taking your steroids suddenly.

Contact details

Please do not hesitate to contact any of the numbers below if you have any questions or concerns regarding your steroids or if you wish to discuss any aspect of your neurosurgical care. We are here to help.

• Neuro oncology specialist nurses (direct dial with answering machine): 01223 256246 or via Addenbrooke’s contact centre 01223 245151 via bleep 154-506 or 152-090
• Team secretary (direct dial): 01223 216780

Additional information about taking steroids

• Always take steroids with or after food. This helps to reduce the possibility of side effects.
• Additional tablets named ‘Calcichew D3 Forte’ are sometimes started to help protect your bones from the thinning effects of steroids. If they were only started as a result of your dexamethasone tablets, you can stop taking the ‘Calcichew D3 Forte’ as your steroids are not for long term use.
• Once you stop taking your steroids, you can usually stop taking your stomach protecting medication (unless you were already on this prior to starting your steroids). Please check with your GP.
• Get the advice of your doctor/ specialist nurse or pharmacist if you forget to take a dose or are sick immediately after taking your steroids. 
• If you need dental treatment, let your dentist know that you are taking steroids.
• Remember, it is extremely important to take your steroids exactly as prescribed.

Safety advice

• Always keep steroids in a safe place and out of the reach of children.
• Never let anyone else take your drugs.
• Once the course has finished, any remaining tablets should be returned to a chemist for safe disposal. Do not flush them down the sink or toilet.