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Steroids – a guide for people
with lymphoma
Steroid drugs are commonly used as part of the treatment for lymphoma because they can:
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help destroy the malignant lymphoma cells and make chemotherapy more effective
reduce some of the side effects of chemotherapy, such as nausea (feeling sick) or allergic
reactions
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c ombat the low blood counts (of red blood cells and platelets) that can occur in one
particular form of lymphoma, chronic lymphocytic leukaemia
improve your appetite and make you feel a bit better.
In this article we will:
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explain what steroids are and what they do
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describe how they are used in lymphoma treatment
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discuss the side effects that they can cause
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highlight some precautions you need to take while you are on them.
What are steroids?
Steroids are substances that are produced naturally in the body. Most of the body’s natural
steroids are hormones (chemical messengers) that control the way our bodies work. There
are two main types of steroid hormone:
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sex hormones – oestrogen and progesterone in women and testosterone in men – which
are involved in the development of our sexual characteristics and our fertility
adrenal steroid hormones (sometimes called corticosteroids), made by the adrenal glands,
which are small organs that lie just above the kidneys.
What do adrenal steroids do in the body?
Adrenal steroid hormones play a vital part in the body’s metabolism, controlling the way the
food we digest is processed and the way it provides the energy we need. They are particularly
important in controlling the balance between using food immediately and storing it in the
body as fat, to use later on. Another major role of these hormones is in the control of the
body’s water content. Steroids stop us from drying out in hot weather, ensuring that the body
holds on to water and salt to replace the loss of these in sweat and urine.
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The adrenal steroids have several other, less well-understood functions. For example, they
can influence mood, behaviour and brain excitability. People with a condition called Addison’s
disease, in which the adrenal glands stop making steroids, are often apathetic, depressed and
irritable. On the other hand, Cushing’s disease, in which the adrenal glands produce excessive
amounts of steroids, often causes excitability, euphoria and strange thoughts.
In healthy people the level of these steroids in the blood varies throughout the day, being
highest after waking and lowest at night. This has led to the suggestion that they might be
important in getting us going in the morning and for letting us wind down at night.
Steroids are essential for normal bone marrow function – patients with Addison’s disease are
usually anaemic, for example. Steroids can also affect the immune system, the body’s defence
against infection. However, in this case they seem to have a negative effect – people with
Cushing’s disease (who have excessive levels of steroids) are less able to fight infections.
Having some understanding of what steroids normally do in the body helps to explain why they
cause certain side effects, which we will describe later on. The side effects of corticosteroids
are just an exaggeration of the normal functions of these hormones in the body.
How are natural steroids normally controlled in
the body?
The body’s natural steroids are therefore potent and vital chemical signals. Control is
exercised by the body’s ‘master’ gland, the pituitary gland. This hazelnut-sized gland sits at the
base of the brain and monitors the function of most of the body’s hormone-producing glands,
including the adrenal glands.
The pituitary gland can detect exactly how much adrenal steroid is in the blood and whether
or not the level is correct. If there is too little, the pituitary sends out its own chemical signal
which tells the adrenal glands to make more. When the pituitary senses the correct level it
stops signalling and the adrenal glands temporarily switch off. If left undisturbed by disease
or medical treatments this hormonal control system keeps our body’s biological processes
in balance.
Steroid medicines
Steroids can be manufactured and used as drugs and they have been used for many years to
treat a wide range of diseases. The sex hormone steroids, oestrogen and progesterone, are
used in contraceptive pills and in hormone replacement therapy. Other steroid hormone
treatments are important in the treatment of breast and prostate cancer. Steroids can be used
to treat illnesses that are caused by inflammation, such as some forms of arthritis.
‘Anabolic’ steroids (male hormones) are the ones that athletes sometimes take to increase
their muscle strength and these are quite different from the steroids that are used in cancer
treatment.
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Using steroids for treating lymphoma
The steroids used in the treatment of lymphomas and leukaemias are the steroids that mimic
the natural adrenal steroids. Common steroids that are used in lymphoma treatment are
prednisolone, dexamethasone and hydrocortisone. It seems that high levels of these steroids
are very toxic to lymphocytes, the blood cells which give rise to lymphomas when they grow
out of control. It is still not fully understood how steroids kill lymphocytes and inhibit the
growth of lymphomas but they are very effective.
On their own, steroids cause only temporary and partial reversal of most lymphomas, but
when they are combined with cytotoxic chemotherapy this remission can be prolonged
or even permanent. They are now an essential part of most treatment regimens for both
Hodgkin lymphoma and non-Hodgkin lymphoma.
As well as their poisonous effect on lymphoma cells, steroids have other more general effects
that are useful as part of treatment for many cancers. Dexamethasone, for example, is a highly
effective anti-sickness drug and is often used together with chemotherapy to prevent nausea.
Steroids are also important drugs in advanced cancer when cure is no longer possible and
control of distressing symptoms is the priority, because:
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they can be used to improve the appetite in people who are rapidly losing weight
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they can improve your feeling of wellbeing and energy levels
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they can reduce the painful tissue swelling or pressure that cancers can sometimes cause
roundabout them.
All of these benefits can be obtained with quite modest doses of steroid and without
significant side effects.
How steroids are given
When you are given steroids, either in tablet form or into your vein by injection or through
a central line, your own pituitary is fooled into believing that the body is making more than
enough adrenal steroids and so it switches your own adrenal glands off. They stay switched
off for as long as you take the steroids continuously. If this extends for many weeks or months
the adrenal glands shrink (atrophy).
If you suddenly stop taking the corticosteroids, the pituitary gland senses the lack of steroids
immediately and should start off the body’s production of natural steroids again. However, if
the adrenal glands have shrunk, no matter how hard the pituitary signals, they might not be
able to resume normal hormone production straightaway.
Without any steroids, whether they are artificial or your own, you would be in danger of
becoming seriously ill. This is why people taking steroids should take them very regularly and
should carry a steroid warning card. (A card is not necessary if the steroids are being given as
a very short course of treatment, for example as an anti-sickness measure.) The card should
be carried at all times so that in an emergency a doctor will know that you are on steroid
treatment and that you need to keep taking it. If you need to have any dental work, tell your
dentist that you are having steroid treatment.
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It is also why, at the end of a prolonged course of treatment, steroids are often tailed off by
gradually reducing the dose over days or weeks or by prescribing them on alternate days.
This allows the adrenal glands to ‘wake up’ gradually, so that when the tablets are stopped the
glands can resume their normal function.
To be safe, the card should be carried in your handbag or wallet for 2 years after your steroid
course has finished to alert people to the fact that you have had steroid therapy. If you have an
operation during this time you must show the card to the anesthetist.
One way of getting round the problem of the adrenal glands shrinking is to give steroids in
short bursts, such as giving them for 5 days every few weeks or on alternate days if they are
to be continued for several months. Both these patterns of administration are used in certain
chemotherapy regimens for lymphoma, so avoiding the need to tail off the dose at the end of
treatment in some people.
Side effects of steroids
Everyone’s reaction to steroids will be different. Any side effects you might develop from
taking steroids will depend on the dose and how long you take them for and will also depend
on whether or not you are taking other medications. Most of the side effects are temporary
and most are upsetting rather than serious. It is important to talk to your doctor or nurse
about all your side effects so that they can help you to manage them.
Increased appetite and weight gain
Steroids stimulate the appetite, so people taking them tend to eat more and put on weight.
Weight tends to go on around the face and trunk and can be lost from the arms and legs.
This change in fat distribution occurs because of the way adrenal steroids control the body’s
food stores.
You might find that even if your appetite doesn’t seem greatly increased or you are off your
food because of the chemotherapy drugs you might still put on weight while you are taking
steroids. Many people find this side effect of their treatment quite distressing but your weight
should go down again when the steroids are stopped.
Changes in blood sugar levels
Our natural steroids act to raise the level of glucose (sugar) in the blood, while the hormone
insulin acts to lower it. The balance of these hormones keeps our glucose level on an even
keel. If this balance is disrupted by overpowering the body’s insulin with large amounts of
artificial steroids the glucose levels can rise. Some patients on corticosteroids develop high
levels of glucose in the blood and can even develop diabetes – though this is often temporary.
Symptoms to look out for are thirst, passing lots of water and having frequent infections,
especially thrush.
If you are already a diabetic you would have to keep a special check on your glucose levels
if you are being treated with steroids. You would have to liaise with your doctor or diabetic
nurse to adjust your diabetic medication if necessary. You should be given special advice on
how to manage your diabetes while you are on steroids.
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Fluid retention
As we have explained, adrenal steroids are important in stopping us drying out by keeping
our salt concentration and water balanced. Sometimes people taking steroid drugs retain too
much fluid, causing swelling of the ankles, hands or feet.
Mood and behaviour changes
Steroids can cause changes in mood and behaviour. They can produce feelings of wellbeing and
sometimes even of euphoria and some people experience a strange ‘low’ feeling when they
are stopped. They can also make you short-tempered and irritable. Very rarely, they can cause
mental confusion. These changes in mood are caused by an exaggeration of the normal actions
of natural steroids.
Difficulty sleeping
Some patients complain of an inability to sleep when on high doses of steroids. The best way
to avoid this problem is to take steroids in the morning when the body is expecting higher
levels of these hormones naturally, rather than in the evening, when they are naturally low.
Indigestion or heartburn
Steroids can irritate the stomach and cause heartburn, stomach pain or indigestion. The
tablets should be taken after a meal or with milk to help protect the stomach lining. You might
be prescribed specially coated steroid tablets or stomach-protecting medicines. Don’t take any
over-the-counter medicines, such as antacids, without discussing this with your doctor first,
however.
Increased risk of infection
High-dose steroids reduce the body’s ability to fight infection. In particular, you can become
prone to develop viral infections, such as cold sores and shingles, and fungal infections,
especially thrush.
Skin changes
High levels of steroids can lead to thinning of the skin, making it more fragile, with a tendency
to bruise easily. Where this thinned skin is stretched over the increasing abdominal fat, pink
stretch marks can appear. The skin also becomes greasier, with a tendency to develop acne.
Less common side effects of steroids used to treat lymphoma
If corticosteroids are given in high doses for more than a few months, especially if they are
given for several years, they can cause thinning of the bones. This is known as osteoporosis.
However, this is extremely uncommon in the regimens used to treat lymphoma. If steroids are
taken for long periods you can also develop cataracts or glaucoma. Again, these side effects
are uncommon, but tell your doctor if you notice any eye problems.
Typical steroid side effects for someone on
lymphoma treatment
After reading this long list of possible side effects, you might be wondering which steroid side
effects you might expect to have if you are on a typical chemotherapy regimen for lymphoma
(when steroids tend to be given off and on at quite high doses, for several months).
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The most prominent side effect is usually the weight gain, particularly around the face, and
this might be accompanied by an increased appetite. Abdominal stretch marks are uncommon,
however. Fluid retention might make you feel a bit bloated and might cause ankle swelling but
this is rarely troublesome. You could develop oral thrush, with a sore mouth, though this is
easily treated. You might notice a tendency to spots and cold sores. Older people sometimes
find their skin is more fragile, with a tendency to bruise relatively easily. Women can be
troubled by vaginal thrush, again straightforward to remedy. During the steroid treatment days
you may feel less tired, with more energy, but find sleep disturbance a problem, especially if
some of the steroids are taken late in the day.
Most regimens do not cause long-term suppression (damping down) of the adrenal gland and
it would be exceptional if they caused sufficient bone or eye problems to cause symptoms.
A word of warning about being on steroids and
chemotherapy together
Steroids have an anti-inflammatory effect. People with rheumatoid arthritis, for example, often
notice that their joints are better during their treatment for lymphoma. Because they are
anti-inflammatory, however, they can suppress the body’s temperature and the normal warning
signs you get when you have an infection might not be so obvious.
This is especially important if your white blood cell count is low as a result of having
chemotherapy. This low white blood cell count is called neutropenia. While your counts are
low you must tell your hospital medical team straightaway if you notice any soreness, redness
or swelling anywhere or if you feel generally unwell – even if your temperature is not raised –
in case you have an infection. You will probably have been given a telephone number to ring if
this happens. The important thing is not to delay, so that any infection can be treated quickly.
Conclusion
Steroids are a very important and very effective part of lymphoma treatment, The way in
which they are given for lymphoma is to maximise their good effects and minimise their side
effects.
Some important points about steroids you need to remember:
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If steroids are part of your chemotherapy, you should carry a ‘steroid card’ during
treatment and for 2 years afterwards.
If you have an operation, always tell the anaesthetist you are on or have previously taken
steroids.
Side effects are common in people having steroids to treat lymphoma – but they are not
usually difficult to treat or harmful in the long term.
If you are taking chemotherapy drugs at the same time let your hospital team know
straightaway if you feel generally unwell, even if your temperature is not high, especially if
you know your blood counts are low.
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Acknowledgements
We would like to thank Dr Paul Revell, consultant haematologist at Stafford General Hospital
and a member of our Medical Advisory Panel, for his help with revising this article, which was
originally written by Dr Chris Cottrill.
More information
The Lymphoma Association produces a wide range of booklets and information sheets on all
aspects of lymphoma, including the treatments that are available, their side effects and how to
cope with them. Visit our website at www.lymphomas.org.uk or phone our freephone helpline
on 0808 808 5555 if you would like to receive any of this information or if you would like to
talk to someone about your lymphoma.
References
British Medical Association and Royal Pharmaceutical Society of Great Britain. British National
Formulary. 61st edition. March 2011. Royal Pharmaceutical Society, London.
Rang HP, et al. Rang and Dale’s Pharmacology. 7th edition. 2011. Churchill Livingstone,
Edinburgh.
American Cancer Society. Steroids and hormones. 2011. Access at: http://www.cancer.org/
Treatment/TreatmentsandSideEffects/PhysicalSideEffects/DealingwithSymptomsatHome/
caring-for-the-patient-with-cancer-at-home-steroids-and-hormones.
This publication should not be used for medical diagnosis or treatment and is for
information only. Although the Lymphoma Association has taken great care in researching
and putting such information together, we cannot give any warranties as to its accuracy.
Please consult a medical professional if you have concerns about your health or treatment.
See www.lymphomas.org.uk for our full disclaimer.
© Lymphoma Association
PO Box 386, Aylesbury, Bucks, HP20 2GA
Freephone Helpline
Produced 08.06.2011
Due for revision 08.06.2013
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