Steroids
You might have steroids as part of your lymphoma treatment.
On this page
How can steroids help in lymphoma treatment?
How might I be given steroids?
What are steroid warning cards?
What side effects of steroids might I get?
What are some of the less common side effects of steroids?
What safety precautions can I take to help me stay well while taking steroids?
Frequently asked questions about steroids and lymphoma
What are steroids?
Steroids are hormones your body makes naturally. Scientists can also make steroids in a laboratory. These copy the effects of the steroids your body makes. Corticosteroids are a type of steroid that are often used as part of lymphoma treatment.
Corticosteroids
Corticosteroids are a type of steroid your body makes. They are important in:
- balancing the water and salt in your body
- controlling your blood pressure
- controlling your metabolism (breaking down food to get energy from it)
- managing your body’s response to allergic reactions
- helping to reduce swelling (inflammation) that can happen as a result of fluid retention
- responding to stress
- regulating your mood.
The most common types of corticosteroids used in lymphoma treatment are dexamethasone, methylprednisolone and prednisolone.
Other types of steroids are sex steroids (oestrogen, progesterone and testosterone) and anabolic steroids. Neither type is used in lymphoma treatment.
How can steroids help in lymphoma treatment?
You might be given steroids alone or as a part of your treatment for lymphoma to help:
- Treat the lymphoma – steroids are poisonous (toxic) to lymphoma cells. You might have steroids alone to treat some types of lymphoma (such as cutaneous T-cell lymphoma, a type of skin lymphoma), or as ‘prephase’ treatment before other treatment such as chemotherapy.
- Boost your appetite – steroids can make you feel hungrier, so that you eat more and increase your energy levels. This can be helpful if you have lost your appetite, are very unwell or physically weak. Sometimes, they are given as part of prephase treatment for a few days before you start chemotherapy.
- Make chemotherapy more effective – you might have a drug combination (regimen) that is made up of steroids and chemotherapy.
- Reduce side effects of chemotherapy, such as sickness (nausea and vomiting).
- Treat an allergic reaction to another lymphoma drug, for example, to rituximab (an antibody therapy).
- Treat cytokine-release syndrome, a possible complication of CAR-T cell therapy.
How might I be given steroids?
You might be given steroids:
- by mouth (orally) as tablets or liquid
- by injection (intramuscularly), as an injection into a muscle – usually your thigh
- through a thin, plastic tube (cannula or central line) into a vein (intravenously)
- as an ointment or cream to put directly onto your skin (topically).
What are steroid warning cards?
Depending on your type of steroid medication and how long you take it for, you might be given a steroid treatment card, a steroid emergency card, or both.
Carry any warning cards you’re given with you all the time you are on steroids and for some time after finishing them – this is usually 12 months, but seek advice from your medical team.
Read any warning cards you’re given carefully and carry them with you all the time you are on steroids and for some time after finishing them – this is usually 12 months, but seek advice from your medical team.
Before you have any dental work, or if you ever need an operation, you should be asked questions about your medical history. Make sure you tell the anaesthetist or dentist that you’ve had steroid treatment. If you have a steroid treatment card, you could show this to them. They can then take any necessary precautions to help you recover well.
Steroid treatment card
A steroid treatment card tells you:
- not to stop taking steroids suddenly
- what to do if you become unwell.
It also gives health professionals information about which steroids you have been prescribed.
You can read more about steroid treatment cards and when you might have one in the frequently asked questions section.
Steroid emergency card
If you are on daily steroid treatment for longer than a few weeks, it’s important to carry a steroid emergency card. The information on it tells healthcare professionals that you should not stop taking steroids suddenly, and that your dose should not be lowered too quickly. This can help to prevent adrenal crisis.
Adrenal crisis
Taking steroids for a long time can mean that your body starts to get used to the changed hormone levels and your body makes fewer steroids. If you then stop taking steroids suddenly, it can lead to a drop in the steroid hormone cortisol in your body. This is known as adrenal crisis, or secondary adrenal insufficiency. It is more likely to happen with steroids taken by mouth (orally).
If you experience adrenal crisis, it is important that you do not stop taking steroid medication suddenly because withdrawal symptoms can be severe. Your consultant can help you safely and gradually reduce your steroid medication.
Symptoms of adrenal crisis include:
- increased risk of infection
- headache
- light-headedness or dizziness
- confusion
- extreme tiredness (fatigue)
- rapid and unexpected weight loss
- feeling or being sick (nausea or vomiting)
- tummy pain
- mild (low-grade) fever, where your body temperature is just a little over normal temperature.
In babies, children and adolescents, the symptoms of adrenal crisis might start off as being quite vague. For example, they could include tummy pains, sickness, feeling tired and lethargic and frequent infections.
If your doctors think you are at a higher risk of developing adrenal crisis, they adjust your steroid medication to help lower this risk.
If you develop adrenal crisis, your doctors give you an injection of extra steroid medication. This helps to help bring your steroid level back up to a safe level.
A group of steroids called mineralocorticoids (including fludrocortisone and hydrocortisone) are sometimes used to treat adrenal crisis.
What side effects of steroids might I get?
Below is a list of some of the most common side effects of steroids. We also outline some less common side effects.
Not everyone gets side effects. You can read more about factors that could affect how likely it is that you will develop them in the frequently asked questions section. However, your medical team can give you advice specific to your situation.
Any side effects of steroids are usually short-term and gradually improve once you stop taking them.
Tell your medical team if you experience side effects so that they can help you to manage them. In some cases, you might need treatment for them. Do not just stop taking steroids without seeking advice as this can lead to adrenal crisis.
Lymphoma Action’s Helpline Services are also here to support you if you are struggling with side effects, or any aspect of living with and beyond lymphoma.
Common side effects of steroids
Common side effects of steroids include:
- muscle weakness and aches (myopathy)
- increased risk of infection
- indigestion or heartburn
- water (fluid) retention (such as lymphoedema)
- changes in metabolism (how your body gets energy from food)
- changes in blood-sugar (glucose) levels
- changes in mood
- difficulties sleeping.
The prednisolone steroids I had for five days perked me up and made me feel great. But once the steroids finished and came out of my system, I had a massive drop. I am now 4 months post-treatment, and I think I tolerated the treatment pretty well. I’m back to work doing half days and look forward to doing things with my family.
Topical steroids can cause side effects in the areas they are applied to. These can include:
- thinning of the skin, making bruising in this area more likely – the risk is further increased if you have a shortage of platelets in your blood (thrombocytopenia)
- changes in skin colour – which are more noticeable in people with darker skin
- spots (acne)
- increased hair growth.
A topical steroid could also cause contact dermatitis, a skin irritation caused by an allergic reaction. If this happens, you will be given a different type of topical steroid treatment.
Myopathy
Steroids can affect your muscles. This is known as myopathy.
Myopathy can cause muscle weakness, often in your hips and shoulders. Symptoms of myopathy can include:
- weakness in your arms and legs, which can make it harder to do things like climbing steps, getting up from a chair, reaching up into a cupboard, and getting dressed
- muscle cramps and stiffness.
Myopathy is more common with higher-dose steroids taken over a long time, particularly in older people.
Usually, myopathy gradually improves once you lower your dose of steroids or stop taking them. However, it can take weeks or months to build muscle strength back up.
Higher risk of infection
Taking steroids for longer than a few weeks can lower your immune system, which helps to fight infection. If this happens, you are at a higher risk of developing infections and it might be harder for you to fight them off.
The type of infections you are more at risk of depends on the type and dose of steroid medication you take. For example steroid tablets and steroids given intravenously (into a vein) can make you more prone to developing colds, chickenpox, shingles and measles. Talk to your doctor about any vaccinations you should or shouldn’t have, and when to have them.
Oral steroids can also cause oral thrush (an infection in your mouth).
Be aware of any signs of infection and seek medical advice straightaway if you notice any.
Indigestion
Steroid tablets can irritate the lining of your stomach. This can cause indigestion, which can include heartburn. Tell your medical team if you experience these side effects so that they can help you to manage them.
Changes in metabolism
Steroids can affect the speed at which your body breaks down food to get energy from it (your metabolism). This can cause weight changes and other changes in how you look.
Weight changes
You might feel hungrier, and so eat more than usual. This can lead to weight gain. However, you might gain weight even if you do not eat more if your metabolism is slower than usual.
Other changes in how you look
Steroids can cause:
- fluid retention in your face and a change to where you store fat – this can lead to a more rounded or puffy appearance, sometimes known as moon face
- a build-up of fat at the base or your neck, sometimes known as buffalo hump
- weight gain in your tummy area (abdomen)
- weight loss in your arms and legs
- less commonly, changes to your skin.
Although a change in weight can be upsetting, continue to eat a healthy, balanced diet. Your weight should gradually return to normal once you stop taking steroids.
Water (fluid) retention
Steroids are important in helping to balance the water and salt in your body. Sometimes, steroid medication can make you keep too much fluid in your body. This is known known as fluid retention or water retention.
Fluid retention can cause:
- bloating
- swelling in your ankles, hands and feet (such as lymphoedema)
- puffiness around your eyes.
Avoid standing for long amounts of time to help ease fluid retention. You might also be interested in our information about coping with lymphoedema.
Changes in blood-sugar (glucose) levels
Steroids and insulin are hormones that your body naturally makes. Steroids cause the level of sugar in your blood to go up. Insulin lowers this level. Together, they work together to balance your blood-glucose levels.
Steroid medication can disrupt this balance and lead to high blood-sugar levels. Usually, this is short-term and the balance comes back once you stop taking steroids. Ask your medical team if you have concerns about this. You should have your blood sugar levels monitored and given advice accordingly. As there is potential for your blood-sugar levels to be disrupted while on steroids, avoid sugary foods and drinks.
Diabetes
Occasionally, taking steroids for a long time can lead to type 2 diabetes, or it can uncover this type of diabetes that has gone undiagnosed. It is important to recognise symptoms of type 2 diabetes, in case you need treatment to help control your blood-sugar levels.
The main symptoms of diabetes are:
• feeling very thirsty
• needing to wee more often than is usual for you, especially at night
• feeling very tired
• losing weight (including muscle) without trying to
• itching around the penis or vagina
• thrush, a yeast infection
• blurred vision.
Tell your doctor straightaway if you have any of these symptoms. It is also important to tell them that you have taken steroid medication.
If you had diabetes before you started steroid treatment, your lymphoma medical team and your diabetes medical team work together to manage your treatment and blood sugar levels.
There is more information about steroids and blood-glucose levels on the Bedfordshire NHS Foundation Trust website.
Mood changes
Steroid medication can affect your mood. This can happen quite soon after you start taking it. Usually, this improves once you stop taking it.
Some people feel happier or more energetic than usual. Other people feel low in mood, short-tempered and irritable. Some people feel low or flat for several days to weeks after they stop taking steroids, as it takes a while for your body to begin making its own steroids naturally again. Very rarely, steroids cause confusion.
Let your medical team know how you are feeling so that they can help to manage these side effects of steroids. If your side effects are severe, they might lower your dose of steroids.
Changes in mood can also impact your relationships with family and friends. You can contact us if you’d like support with any aspect of living with and beyond lymphoma. You might also be interested in our information about communicating with the people around you, which includes tips to help you let others know how you’re feeling.
Difficulty sleeping
Steroids can disrupt the natural sleep cycle. You might feel alert and have more energy when you are trying to sleep. It can also be harder to sleep if steroids affect your mood, such as making you feel irritable.
If you have fluid retention as a side effect of steroid medication, the swelling and discomfort can also make sleep less restful. You might also need to wee more often, which can interrupt sleep.
Speak to your doctor or clinical nurse specialist for advice. They might recommend that you take your steroids first thing in the morning and can offer suggestions to help you get restful sleep.
You might also be interested in our podcast in which Dr Mike Scanlon talks about getting a good night’s sleep. Our Facebook Support Group also share top tips for difficulty sleeping.
What are some of the less common side effects of steroids?
We list some of the less common side effects of steroids below. These are more likely if you take higher-doses of steroids, particularly over a long time. However, they could also happen with low-doses of steroids taken for a long time. Your medical team can talk to you about your individual likelihood of developing any side effects.
Changes to your skin
Oral and topical steroids can cause your skin to become thin and fragile, which can make you bruise more easily than usual. Having a shortage of platelet cells in your blood (thrombocytopenia) can further increase this risk.
Steroids can also make your skin more oily, which can cause spots (acne). Most commonly, this happens on the face, back and chest, and in younger people.
Bone thinning and weakness
You might experience aches and weakness in your bones.
If you take steroids for a long time, you might be at risk of bone thinning and weakness (osteoporosis). This can make them more likely to fracture or break.
Osteoporosis is very uncommon with the types of steroids used in lymphoma treatment. However, in older people who have also had chemotherapy, it can increase the risk of fracture – particularly in the spine.
If you are at an increased risk of osteoporosis, your doctors might suggest a dual energy X-ray absorptiometry (DEXA) scan to check your bone density. You might also be prescribed medicines to help protect you from developing osteoporosis.
The NHS outlines lifestyle factors that can help to reduce the risk of developing osteoporosis.
Increased blood pressure
Steroids can lead to higher blood pressure (hypertension), causing headaches and dizziness. You should have regular blood pressure checks while you are taking steroids – ask your medical team for advice.
To help reduce your risk of developing high blood pressure, the NHS recommends following a healthy lifestyle.
You can read more about hypertension (high blood pressure) on the NHS website.
Eye problems
If you take steroids for a long time or at a high dose, they can cause effects such as:
- reduced vision
- cloudy patches in the lens of your eye (cataracts)
- a build-up of pressure in the eye (glaucoma).
If you notice any changes in your vision, ask your GP or optometrist (optician) for an eye health check. You might be interested in Macmillan Cancer Support’s information about help with health costs, including with eyesight tests and eye treatment.
What safety precautions can I take to help me stay well while taking steroids?
There are some simple things you can do to help lower the risk of developing problems while you are on steroid medication.
Infection
As steroids can affect your immune system:
- be aware of signs of infection and tell a member of your medical team as soon as possible if you notice any – early action can help stop problems from developing into more serious difficulties.
- try to lower your risk of developing infection. Avoid contact with people who have chicken pox or shingles, even if you have had these infections in the past – they could be serious if you have lymphoma and are on steroids. Tell your doctor straightaway if you think you could have chicken pox or shingles.
- follow the advice of your medical team about any vaccinations you should or shouldn’t have – including when to have them.
Other medicines
Some medicines and other treatments could interact with your steroid medication and change their effect.
Speak to your doctor about the safety of taking other medications while you are taking steroids. This includes any non-prescription and herbal treatments, such as those taken for:
- pain relief medications, such as ibuprofen
- indigestion, such as antacids
- high blood pressure (hypertension)
- heart problems
- tuberculosis
- diabetes
- seizures
- blood clotting, for example blood thinning drugs, such as warfarin.
Vaccinations
Ask a member of your medical team or your GP about which vaccinations are safe and advisable for you to have; this includes travel vaccinations if you are planning a trip to another country, and the COVID-19 vaccination.
Live vaccines
In general, you shouldn’t have live vaccines (made using live viruses or bacteria) while you are on steroid medication and for 6 months afterwards. This is likely to be longer (at least 24 months) if you have had a stem cell transplant. Your doctors can give you advice specific to your situation.
Non-live (inactivated) vaccines
Inactivated vaccines (such as the winter flu vaccination) are considered safe for people with lymphoma; however, they might not be as effective. Speak to your doctor for advice.
There is more information about vaccinations in our day-to-day living information.
Frequently asked questions about steroids and lymphoma
Your doctors plan your steroid treatment based on your individual needs and other health factors.
You might first have a higher dose of steroids for up to a few weeks to help manage lymphoma symptoms.
The risk of developing them is affected by factors such as:
- the dose of steroid
- how long you take steroids for
- taking certain other medications
- your age – children and older people have a higher likelihood of developing side effects
- having certain other medical conditions.
It is important that you do not stop taking steroid medication suddenly. Once you are taking steroid medication, your body starts to get used to the changed hormone levels. If you stop taking them suddenly, withdrawal symptoms can be severe. This includes the risk of adrenal crisis.
Your consultant can help you to safely and gradually reduce your steroid medication.
You are given a steroid treatment card at the beginning of treatment with steroids if you are taking them in tablet or liquid form (orally), for more than 3 weeks.
Your doctor might also give you a steroid warning card in other situations. For example, if you have four or more short courses of oral steroids a year that you take for around 1 to 2 weeks.
The amount of steroid medication in breast milk is unlikely to harm an infant. However, speak to your medical team for advice.
No. The types of steroids sometimes used illegally to boost muscle strength and improve athletic performance are anabolic steroids. These are made in a laboratory and copy the effects of the male sex hormone testosterone.
Anabolic steroids are not used in lymphoma treatment.
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