Steroids for treatment of oedema

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What is this information about?

This information is about steroid treatment for people with oedema (swelling) caused by cancer. It explains:

• what steroids are
• why you need steroid treatment if you have oedema
• which types of oedema you may have that could mean we may give you steroid treatment
• the side effects of steroids
• which side effects mean that you should seek urgent advice from a GP or other healthcare professional if you have them
• how your dose of steroids may change

Why have I been given this information?

You have been given information because we have prescribed steroids for you to treat the oedema that you have because you have cancer. This information will enable you to know what to expect from your treatment.

What are steroids?

Steroids are one type of hormone.

Hormones are chemical substances made in different glands in your body. They act like messenger molecules. After being made in one part of the body, they travel to other parts of the body. They help control how cells and organs do their work. Steroids that are naturally present in your body are called corticosteroids.

Your body usually makes the amount of natural corticosteroids that it needs to help to keep it working properly.

Why might I need extra steroids if I have oedema caused by cancer or other symptoms?

When you have oedema caused by cancer your body needs more steroids than it can make itself. If this happens to you we may prescribe you an artificial steroid medication. This can help in many ways including helping to reducing the swelling caused by the oedema and improving other symptoms.

Steroids can also help if you have been feeling sick (have nausea) or being sick (vomiting). If you take steroids, you may feel or be sick less often or less severely. This is because steroids have what is called an anti-emetic effect.

Because you may feel less sick if you are taking steroids, they can improve your appetite. 

If you are taking steroids for this reason, you are likely to be on a lower dose than you would be for other reasons.

The steroid medication that we are most likely to prescribe for you is called dexamethasone.

It is possible to have dexamethasone alongside the other treatments for cancer that you are having such as surgery (having an operation), chemotherapy or radiotherapy.

When might you prescribe steroids for me?

Steroid medicines can be used for many reasons including reducing the swelling caused by oedema and improving other symptoms. We will prescribe them for you if:

• we can see swelling in your brain or spine on your scan or
• you are having problems which we think are caused by oedema

What symptoms might I get from oedema caused by a cancer or tumour?

This will depend on where in your body the cancer or tumour is:

Spinal oedema can be caused by a collection of fluid around the spinal cord. This may happen if you have a spinal tumour or metastatic cancer spread (cancer that has spread to your spine from another part of your body). Spinal oedema symptoms can include:

• pain
• tingling or numbness in your arms or legs
• changes to how you pee or poo (bladder and bowel habits)
• weakness in your arms or legs
• changes to how easily you are able to move around and walk
• weakness
• memory problems
• change in speech or language
• headaches
• feeling sick or being sick (nausea or vomiting)

I am diabetic. What must I do if I have been prescribed steroids?

Do tell your diabetic nurse or a GP that you have been prescribed steroids. They may need to change the type or dose of medicines that you are taking for your diabetes. They are likely to arrange for your blood glucose levels to be checked more often. You will be given a blood test called a HbA1c and a glucose test to see how well your body is coping with your diabetes while you are taking steroids.

What are some of the more usual side effects might I get from taking steroid medicines?

Like most medicines, steroids can have side effects. These will be different for different people but are likely to be more noticeable if you are on a higher dose of steroids.

Side effects from steroids can include:

Changes in mood

Steroids can have an impact on your mood. You could have mood swings or feel depressed, agitated, or irritable. Your mood should return to normal as the steroids are reduced but if you have any concerns please contact your health professional or a GP.

Muscle weakness

You may notice it is more difficult to do your usual daily activities such as walking, dressing or housework as taking steroids can make your muscles weaker.

Bone weakness

Taking steroids can weaken your bones. There is a greater chance that you may get weak, brittle, or fragile bones (osteoporosis). This is more likely if you have been taking steroids for several weeks or months.

Your doctor may prescribe you a medicine that will protect your bones and help them to stay strong while you are taking steroids. If you have any concerns, please contact your health professional or GP.

Difficulty in getting to sleep or staying asleep (insomnia)

Steroids can cause some sleeping difficulties. To avoid these do take your steroid medicines early in the day as you have been prescribed. Steroids are usually prescribed to be taken once (OD) or twice (BD) a day.

• If you only have to take your steroids once a day (OD) take them at breakfast time.
• If you have to take your steroids twice a day (BD) take them at breakfast time and lunch time.

Sleeping difficulties are likely to be worse if you are on a higher dose of steroids so aim to move to a lower dose (wean to a lower dose) as in the plan below.

Day 1-4 (4 days) – 16mg  8mg B.D*

Day 5-8 (4 days) – 12mg  6mg B.D*

Day 9-12 (4 days) – 8mg  4mg B.D*

Day 13-16 (4 days) – 4mg  2mg B.D*

Day 17-20 (4 days) – 2mg O.D**

Irritation of the stomach lining

You will have medication prescribed to protect your stomach lining. Always take your steroids with food or a glass of milk. Please tell your health professional if you have any heartburn or indigestion.

Feeling more hungry (increased appetite)

You may feel hungrier and have cravings for sweet food which can lead to you putting on weight.

Do try to have a healthy balanced diet. Your appetite should return to what it was before as your dose of steroids is reduced but do contact your health professional or GP if you have any concerns.

Higher blood glucose (blood sugar) levels

Your body adjusts the levels of glucose in your blood using insulin that it makes. Steroids can change your blood glucose level and mean that you get a type of diabetes. The symptoms of this include:

• feeling thirsty more often
• peeing more often
• feeling more tired
• blurred vision

Do contact a GP, the NHS 111 service (phone 111 or visit 111.nhs.uk) or your Clinical Nurse Specialist team straightway if you get any of these symptoms.

We will give you a blood test to measure your blood glucose levels. Some people need to take a medicine to lower their blood glucose while they are taking steroids. Your blood glucose levels normally return to normal once you have stopped taking your steroid medication.

Increased risk of infection and delayed healing

Taking steroids can mean that your immune system does not work so well. It can mean that there is a higher chance that you may get infections such as thrush (an infection caused by a fungus) in your mouth, bladder (urine) and chest infections. If you have any concerns, please contact a health professional or a GP.

Changes in your periods (your menstrual cycle)

Your periods may come at different times of the month or have different gaps between them or become heavier or lighter. They will usually return to what is usual for you after you have finished your steroid treatment.

There are some side effects that are less usual for people to get when they are taking steroid medication. If you think steroids have caused a side effect, please contact your health professional or GP.

Are there any symptoms that I might get when I’m taking steroid medication that mean I should contact a health professional or GP straightaway?

Yes. Do contact a health professional or GP straightaway if you have:

• a raised temperature (fever)
• flu type symptoms
• pain or stinging when you pee (urinate)
• a new cough that does not go away after a few days
• a new sore mouth
• wounds or cuts that take longer than usual to heal
• any of the symptoms listed in the  higher blood glucose (blood sugar) levels section of this information.

Where can I find more information about steroids?

Steroid tapering guidance (clatterbridgecc.nhs.uk)

Steroid-induced diabetes | Diabetes UK