Steroids are hormones (chemical messengers) that are made naturally in your body.
There are 2 main types of steroid:
- sex steroids (oestrogen, progesterone and testosterone), involved in sexual development and fertility
- corticosteroids, which help to control many of your body’s functions.
Corticosteroids are the type of steroid used to treat cancer. They are made in the adrenal glands. We all have 2 adrenal glands, 1 above each kidney.
Corticosteroids play a vital role in:
- metabolism (the way the body digests food to get energy)
- controlling the balance of salt and water in the body
- regulating blood pressure
- fighting infection (immunity)
- reducing inflammation (swelling) and allergic reactions
- regulating mood.
The corticosteroids used to treat disease are made in a laboratory. The types most often used to treat cancer are prednisolone, methylprednisolone and dexamethasone.
Note: You might have heard of ‘anabolic steroids’. These are man-made steroids that copy the effects of the male hormone testosterone. Some athletes take them illegally to increase their muscle strength and boost athletic performance. Anabolic steroids are not used in the treatment of lymphoma.
You might be given steroids alone or as a part of your treatment for lymphoma to:
- Treat the lymphoma itself – steroids are poisonous to lymphocytes (the white blood cells from which lymphomas develop). You might have steroids alone to treat some types of lymphoma (eg cutaneous T-cell lymphoma, a type of skin lymphoma).
- Increase the effectiveness of chemotherapy – you might have a regimen (drug combination) that includes steroids and chemotherapy, for example ‘CHOP’.
- Reduce the side effects of chemotherapy, such as nausea (feeling sick).
- Treat an allergic reaction to another anti-lymphoma drug, such as to rituximab (a targeted antibody therapy).
- Increase your appetite to help you eat more and to boost your energy levels. This might be part of ‘prephase treatment’, which you have for a few days before you start chemotherapy if you are very unwell or frail.
You might be given steroids:
- orally (by mouth) in the form of tablets or liquid
- intramuscularly (by an injection into a muscle, usually in your thigh)
- intravenously (into a vein), through a cannula or central line (thin, plastic tubes)
- topically (directly onto the skin) as an ointment or cream.
As is the case with all treatments, steroids can have side effects. Most of these are just an extreme form of the natural effects of your body’s own corticosteroid hormones.
Although possible side effects of steroids may seem alarming, they are usually short-term and go away once you stop taking steroids. Not everyone experiences side effects – whether you develop them depends on the dose of steroids you have and how long you take them for. Below, we outline the most common side effects of steroids first. We then list some of the less common side effects.
Let your medical team know if you have any side effects so that they can help you to cope with them.
When used in the treatment of lymphoma, the most common side effects of steroids are:
- indigestion or heartburn
- increased appetite and weight gain
- fluid retention
- changes in blood glucose (sugar) levels
- changes in mood
- difficulty sleeping
- increased risk of infection.
Steroid tablets can irritate the lining of your stomach and cause indigestion or heartburn. To protect your stomach, you should take steroids with milk or after a meal. You might also be prescribed stomach-protecting medicines such as ranitidine. Some over-the-counter medicines for indigestion and heartburn (eg antacids) may interact with steroids. Do not take any such medicines without first seeking advice from your doctor.
Steroids can stimulate your appetite, leading you to eat more and gain weight. Steroids can also temporarily affect how your body stores fat; it may start to build up in areas such as your face, while you lose weight from your arms and legs.
Some people find that their weight increases even if their appetite doesn’t. This can happen for various reasons including changes to your metabolism (how quickly you burn calories). Although this can be distressing, your weight should return to normal once you stop taking steroids.
Steroids play an important role in regulating the balance of water and salt in your body. Sometimes, steroid medication causes you to keep too much fluid in your body, which can make you feel bloated. It can also lead to swollen ankles, hands or feet, and puffiness around your eyes.
To ease fluid retention, avoid standing for long periods of time. You might also find that it helps to raise your legs when you are lying down. Gentle exercise – even a short walk – can help, too.
Natural steroids made in your body cause the level of glucose (sugar) in your blood to rise. Insulin (another hormone) lowers the level of glucose. Together, steroids and insulin balance your blood glucose levels. Steroid medication disrupts this balance and may cause high levels of blood glucose. Occasionally, this can lead to diabetes. Usually, the imbalance is temporary. It is important, however, that you recognise the symptoms of diabetes in case you need treatment.
Common symptoms of diabetes are:
- being very thirsty
- passing a lot of urine, especially at night
- blurred vision
- frequent infections (eg thrush)
- cuts and grazes that take a long time to heal
- losing weight without trying to
- feeling more tired than usual.
Tell your doctor straightaway if you have any of these symptoms. There are various possible causes for each of these symptoms, particularly for weight loss and fatigue. Your doctor should examine these causes and advise you accordingly.
If you already have diabetes, monitor your glucose levels carefully while you are being treated with steroids. Your diabetic medicine might need to be adjusted. You should be referred to a specialist diabetes nurse. You should be given advice for managing your diabetes while you are taking steroids; ask for it if you haven’t received it.
The steroids that occur naturally in your body regulate how excited and nervous you feel. Taking steroid medication can have an impact on your mood – some people feel more upbeat than usual; others feel an unpleasant edginess. Steroids can also make you feel short-tempered and irritable. Very rarely, they can cause confusion. Some people feel low or flat once they stop taking steroids.
Let your medical team know if steroids affect your mood. They might stop your steroids gradually to help manage how you feel.
Some people have difficulty sleeping when they are on steroids. You should take your steroids first thing in the morning, when your steroid levels are naturally higher. Speak to your medical team for advice on when to take your steroid medication.
Steroids can reduce your ability to fight infection. In particular, you might be more prone to viral infections, such as cold sores and shingles. Fungal infections (eg thrush) are also very common when you are taking steroids.
Tell your doctor straightaway if you develop signs of infection, including, but not limited to:
- chills and sweating
- feeling generally unwell, confused or disoriented
- earache, cough, sore throat or mouth
- redness and swelling around injuries, skin sores, or intravenous lines
- a burning or stinging sensation when passing urine
- unusual vaginal discharge or itching
- unusual stiffness of the neck and eye discomfort around bright lights.
Keep a thermometer handy so that you can easily check your temperature. Call your medical team if your temperature goes above 38°C. Remember that shivering can be a sign of infection even if you do not have a fever. This is more likely if you are taking steroids because steroids can have an anti-inflammatory effect and mask the normal warning signs of infection. An awareness of signs of infection is particularly relevant to you if you are neutropenic (have low neutrophils) because you are more likely to get infections.
Other side effects of steroids used in the treatment of lymphoma are rare. They usually happen if you take steroids for a period of months or at least a few weeks. Tell your medical team or your GP if you have any of these side effects so that they can help you to cope with them.
- Skin changes – a high dose of steroids can lead your skin to become thin and fragile, making you bruise more easily than usual. Your skin may also become more oily, which can cause spots.
- Aches and weakness in your muscles – your legs might feel weaker than usual. Standing, climbing stairs and getting up from a chair may be more difficult than usual.
- Aches and weakness in your bones – if you have high doses of steroids for more than a few months, you could develop osteoporosis (weak bones). This is extremely uncommon with the types of steroids used in the treatment of lymphoma. If your doctor feels you are at an increased risk of osteoporosis, they may prescribe medicines to protect you against it or suggest a special scan to keep a check on your bone density.
- Headaches and dizziness – these can be the result of raised blood pressure. Your medical team should check your blood pressure regularly while you are on steroids.
- Blurred or reduced vision – if you take steroids for a long time, you could develop cataracts (cloudy patches in the lens of your eye) or glaucoma (build-up of pressure in the eye), both of which affect sight. If you notice changes in your vision, consult an optometrist or your GP.
There are some simple steps you can take to ensure you stay well when you are taking steroids.
Avoiding taking other medicines that could interact with your steroids
Steroids sometimes interact with other medicines, which can change the effect of both medicines. Examples of drugs that can interact with steroids are medicines used to treat:
- inflammation, eg ibruprofen
- indigestion, eg antacids
- high blood pressure
- heart problems
Anticoagulants (blood thinning drugs that help to prevent blood clots) such as warfarin, can also interact with steroids.
Tell your medical team about any medicines you are taking. You should also check with them before taking any over-the-counter (non-prescription) medicines, including herbal medicines.
Prevent pregnancy and avoid breastfeeding
It is not advisable to become pregnant, or to father a child, while on steroids or for a few months afterwards. This is because steroids can harm the development of an unborn baby so it is important to use reliable contraception during this time.
If you already have a baby, it is not advisable to breastfeed. Steroids can pass into the breast milk and cause side effects, including slowing your baby’s growth.
Take care not to get chicken pox or shingles
If you’ve never had chicken pox or shingles, avoid people who have these infections. Although they are not too troublesome nowadays for most people, they could be serious for you if you have lymphoma and are on steroids. Tell your doctor straightaway if you think you could have chicken pox or shingles.
Be aware of which vaccinations are safe for you to have
You shouldn’t have live vaccines (made using bacteria or viruses that are weakened but still alive) while you are on steroids or for 6 months afterwards.
Live vaccines include those given to protect against:
- measles, mumps and rubella (MMR)
- tuberculosis (BCG vaccine)
You can have non-live vaccines (eg the winter flu jab) although these might not be as effective as usual.
What should I do if I feel unwell when I am taking steroids?
Contact your medical team straightaway if you have any signs of infection or if you feel generally unwell. This is especially important if you have neutropenia (low neutrophils), a common side effect of chemotherapy. Problems are usually easier to treat if you seek medical assistance as soon as possible after they develop. You should have been given a number to call if you feel unwell. If you don’t have one, ask for it.
Why is it important that I don’t stop steroid treatment suddenly?
If you are taking steroids for a long time, your body begins to adapt to the changed hormone levels. This can lead to adrenal suppression (where you do not produce enough of your own steroids). When this happens, it is important not to stop steroids suddenly. If you do, you might get withdrawal symptoms, which can be severe. If you have taken steroids regularly over a long period of time, it’s important that they are reduced gradually. Always follow the advice of your doctor.
In case of an emergency, a steroid card lets doctors know that you are on, or have recently had, steroid treatment. It tells them the dose of steroid and, if applicable, alerts them to the fact that you need to keep taking them.
You are usually given a steroid warning card if you are on steroids for 3 weeks or longer. You should carry it in your purse, wallet or bag while you are taking steroids and for 2 years after your treatment ends.
It can take a long time to fully recover from adrenal suppression, particularly if you had high-dose steroid treatment. Steroids are important in the recovery from surgery or injury. If you have any dental work or an operation during this time, you must show the card to your dentist or anaesthetist. He or she can take any necessary precautions to ensure you recover well.