Steroids – a guide for people with lymphoma - Lymphoma Association

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Steroids – a guide for people
with lymphoma
Steroid drugs are commonly used as part of the treatment for lymphoma. They are
used in the treatment of both Hodgkin lymphoma and non-Hodgkin lymphoma. In this
information sheet we aim to answer the questions you might have about steroids:
• What are steroids? (see below)
• How are steroid drugs given? (page 2)
• Why are steroids given as part of lymphoma treatment? (page 2)
• When are steroids given as part of lymphoma treatment? (page 3)
• What side effects can steroids cause? (page 3)
• Are there any precautions I should take if I am taking steroids? (page 6)
Steroids are often given together with chemotherapy. We have separate
information on chemotherapy and on other lymphoma treatments. Please
contact the helpline on 0808 808 5555 if you would like this information or if you
would like to talk to someone about any aspect of your treatment. You can also
download the information from our website (www.lymphomas.org.uk).
What are steroids?
Natural steroids
Steroids are hormones that are produced naturally in the body. Hormones are chemical
messengers that control the way our bodies work. The body produces two main types
of steroid hormone – sex hormones and corticosteroids. The sex hormones you might
have heard of are oestrogen, progesterone and testosterone. They are produced in the
ovary and the testis and they are involved in our sexual development and in fertility.
These are not the type of steroid used to treat lymphoma and other cancers.
The steroids used to treat cancer are a form of corticosteroid. Corticosteroids are
made naturally in the body by the adrenal glands, which are small organs that lie just
above each kidney. Corticosteroids play a vital role in our metabolism and they help to
control many of the body's functions. They help to:
• control the way the food we digest is processed and the way it provides the energy
we need
• control the balance of salt and water in the body
• regulate the blood pressure
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• regulate the immune system, our defence against infection
• reduce inflammation and allergic reactions
• regulate our mood and how excitable we feel.
Steroid drugs
The steroids that are used to treat disease are man-made corticosteroids. Steroid drugs
have been used for many years to treat a wide range of diseases. Steroids can be
used to treat illnesses that are caused by inflammation, such as asthma, inflammatory
bowel disease and some forms of arthritis. They are also used in the treatment
of some cancers. The steroids used most often to treat cancer are prednisolone,
methylprednisolone and dexamethasone.
Note that ‘anabolic’ steroids are manufactured steroid hormones that some athletes
have been known to take in order to increase their muscle strength. These are quite
different from the steroids that are used in cancer treatment.
How are steroid drugs given?
Steroid drugs can be given:
• orally (by mouth), in tablet, soluble tablet or liquid form
• intramuscularly (by injection into a muscle)
• intravenously (into a vein) – either given through a short, thin tube called a 'cannula'
that has been put in one of your veins or through a central line or a PICC line
(a peripherally inserted central catheter)
• topically (as ointments or creams).
Our information on chemotherapy gives more detail on central and PICC lines
used to give lymphoma treatments. Please ring the helpline on 0808 808 5555
or visit www.lymphomas.org.uk if you would like more information.
Why are steroids given as part of lymphoma treatment?
Steroids are given to treat lymphoma because they can:
• help destroy the cancerous lymphoma cells – high levels of steroids are very
poisonous to lymphocytes, the blood cells which form a lymphoma when they grow
out of control
• make the body more sensitive to chemotherapy
• reduce some of the side effects of chemotherapy, such as nausea (feeling sick) or
allergic reactions to other anti-lymphoma drugs
• improve your appetite and increase your energy levels – this effect is sometimes
used in people who are particularly unwell because of their lymphoma, to improve
their general health before starting chemotherapy (this is called 'prephase' or 'lead-in'
steroid treatment, see page 3)
• reduce any painful tissue swelling that the lymphoma is causing, for example from
very swollen lymph nodes (glands) pressing on a nerve.
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When are steroids given as part of lymphoma treatment?
Steroids may be given:
• alone to treat a few types of lymphoma, such as cutaneous T-cell lymphoma, a skin
lymphoma that can often be treated successfully with steroid creams or ointments
• together with chemotherapy to make it more effective and to help reduce
side effects such as nausea. This is the most common way steroids are given in
lymphoma treatment. An example of a chemotherapy–steroid treatment regimen
is CHOP, a combination of cyclophosphamide, hydroxydaunorubicin and vincristine
(Oncovin ® ) with the steroid drug prednisolone
• to treat side effects of other lymphoma treatments – for example to treat
allergic reactions to transfusions of blood products or allergic reactions to 'targeted
therapies' such as rituximab
• as prephase treatment for a few days before starting chemotherapy in people
who are very unwell or frail.
If you are already on steroid treatment for another medical condition, your medical
team will take that into account when they plan your treatment. They will review all
your current medication when they assess your general health and will liaise with your
other doctors if necessary.
What side effects can steroids cause?
Over the next few pages we will describe the side effects that you might experience.
These effects are really just an exaggeration of the normal functions of corticosteroid
hormones in the body.
Everyone’s reaction to steroids will be different. Whether you develop side effects
will depend on what dose of steroids you are given and on how long you take them
for. There are some things you can do to cut down the likelihood of some of the side
effects developing.
Many side effects are short term and will go away once you stop treatment but it is
important that you let your team know about any symptoms you have, so that they
can help you to manage them.
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. This is because some preparations can react with steroids
(see page 6).
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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 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.
Fluid retention
Steroid hormones from the adrenal glands play a role in regulating the body's salt and
water balance. Sometimes people taking steroid drugs retain too much fluid, causing
swelling of the ankles, hands or feet, or puffiness around the eyes. This can make you
feel bloated, which is unpleasant but rarely very troublesome.
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 under control. This balance can be disrupted by steroid drugs and the body's
glucose levels can rise. Some people who are taking steroids develop high levels of
glucose in the blood and some even develop diabetes. This is usually temporary but it
is important to recognise the symptoms. Symptoms to look out for are thirst, passing
lots of water, blurring of your vision and having frequent infections such as thrush. Tell
your medical team if you have any of these symptoms.
If you already have diabetes you will need to keep a special check on your glucose
levels if you are being treated with steroids. Your diabetic medication might need to be
adjusted. You should be given special advice on how to manage your diabetes while you
are on steroids. If you have a nurse who helps you manage your diabetes, make sure
you let them know you are taking steroids.
Mood and behaviour changes
Steroids can cause changes in mood and behaviour. Some people can feel better
in themselves and more upbeat than usual, but this can be felt as an unpleasant
edginess or a sensation of being a bit 'high'. Steroids can also make people very
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 on how excited and nervous we feel.
Some people experience problems once the steroids are reduced or stopped – when
they describe feeling ‘low’ or 'flat'. This is also a side effect of your treatment, so do
let your medical team know if you feel this way. Sometimes it is possible to stop the
steroids more slowly, which can be helpful.
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Difficulty sleeping
Some people complain of an inability to sleep when they are taking steroids. The best
way to avoid this problem if you only need one dose in the day is to take your steroids
in the morning. This is the time of day when the body is expecting higher levels of
these hormones naturally, while steroid levels are naturally lower in the evening.
Increased risk of infection
High doses of 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. Fungal
infections such as thrush are also more common if you are on steroids.
Less common side effects of steroids used to treat lymphoma
When steroids are used to treat lymphoma, they are given over a period of several
months and in quite high doses, but they are normally only given for a few days at a
time, together with cycles of chemotherapy. This is why the side effects described
above are temporary and normally not too severe.
The following side effects are less common because they are usually only seen if
steroids are given to people for long periods, but tell your medical team or your GP if
you have problems with:
• skin changes – high levels of steroids can lead to thinning of the skin, making it
more fragile, with a tendency to bruise easily. The skin also becomes greasier, with a
tendency to develop spots.
• muscle aches or weakness – people sometimes find they have difficulty standing
up from a chair or climbing stairs.
• headaches or dizziness – these might be caused by raised blood pressure. Your
blood pressure should be checked regularly while you are on steroids.
• aching bones or bones that break easily – 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 (called 'osteoporosis'). This is extremely uncommon
with the chemotherapy–steroid regimens used to treat lymphoma. You can be
prescribed medicines that will protect you against osteoporosis.
• blurred or reduced vision – if steroids are taken for long periods you can develop
cataracts or glaucoma. Again, these side effects are uncommon, but it is important
that you visit your optometrist if you notice changes in your vision.
These lists of side effects of steroids look quite alarming but it is important to
remember that people who are treated with steroids as part of treatment for cancer
rarely experience any lasting ill-effects of these drugs.
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Are there any precautions I should take if I am taking
steroids?
Taking other medicines
Steroids can react with other medicines, including some medicines that you can buy
yourself without a prescription. When drugs react with one another their effects in
the body can be changed. There are some drugs used to treat inflammation (such as
ibuprofen), indigestion (such as antacids), high blood pressure, heart problems and
tuberculosis that react with steroids. Some blood-thinning drugs, anti-diabetic drugs
and anti-seizure drugs are also affected by steroids.
It is therefore important to tell your medical team about any other medicines you are
taking. You should also check with them before taking any over-the-counter medicines,
including herbal medicines.
Carrying a steroid warning card
If steroids are taken for a long time, the body adapts to the changed hormone levels
and the tablets should not be stopped suddenly. If they are stopped suddenly,
withdrawal symptoms can occur, which can be severe, especially if you are already
feeling unwell. This is why people who take steroids regularly over a long period need
to have them tapered off slowly and why people on steroids are sometimes given a
steroid warning card (see Figure 1). A card is not necessary if the steroids are being
given as a very short course of treatment, for example when they are used only as an
anti-sickness measure, but you might be given one if you are having a longer course
of steroid treatment.
Figure 1: A steroid treatment card
If you are given a card you
should carry it with you
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. Keep it in
your handbag, purse 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 any dental work or
an operation during this time,
you must show the card to
the dentist or anaesthetist.
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Pregnancy and breastfeeding
It is recommended that you use reliable contraception while you are on steroids
because it is not advisable to become pregnant or father a child while taking steroids.
Steroids pass into breast milk, so breastfeeding is also not advised.
Vaccinations
Ideally, you should not be immunised with live vaccines while you are on steroid
treatment or for 6 months afterwards. Live vaccines include the measles, mumps and
rubella vaccines (usually given together in the MMR jab), the shingles vaccine and
vaccines against tuberculosis and yellow fever. You can have other, non-live vaccines,
such as the winter flu jab, but they might not be as effective as usual.
Feeling unwell while you are on steroids and chemotherapy together
Steroids have an anti-inflammatory effect. This means that they can lower the
body’s temperature and the normal warning signs you get when you have an
infection – such as a fever – might not be so obvious.
This is especially important to remember if you have reduced numbers of
white blood cells called 'neutrophils' in your bloodstream. This low white
blood cell count is called 'neutropenia' and it is a common side effect of many
chemotherapy drugs. If it is possible that your counts could be low, you must tell
your hospital medical team straightaway if you notice any new symptoms such
as cough, diarrhoea, burning when you pass water, or any soreness, redness or
swelling anywhere.
You should also contact the hospital if you have no specific symptoms but just
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 in contacting your hospital team, so
that any infection can be treated quickly.
Conclusion
• Steroids are a very important and very effective part of lymphoma treatment. They
are given to kill lymphoma cells and to help with the side effects of chemotherapy
and other lymphoma treatments.
• Steroids are given in a way that maximises their good effects but minimises their
side effects. This means that although side effects are common in people having
steroids to treat lymphoma, they are not usually severe, difficult to treat or harmful
in the long term.
• If steroids form a substantial part of your chemotherapy, you should carry a steroid
warning card during treatment and for 2 years afterwards so that other doctors,
anaesthetists and dentists know that you have been taking them.
• If you are taking chemotherapy drugs at the same time as steroids, let your hospital
team know straightaway if you feel generally unwell, even if your temperature is
not high, especially if your blood counts could be low.
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Acknowledgement
The Lymphoma Association would like to thank Dr Paul Revell, consultant
haematologist at Stafford Hospital, for his help with revising this information sheet.
Further information
British Medical Association and Royal Pharmaceutical Society of Great Britain. British
National Formulary. 66th edition. September 2013 – March 2014.
Cancer Research UK. Steroids (dexamethasone, prednisolone, methyl prednisolone).
CRUK. Available at: www.cancerresearchuk.org/cancer-help/about-cancer/treatment/
cancer-drugs/steroids (accessed 16 November 2013).
Patient.co.uk. Oral steroids. Available at: www.patient.co.uk/health/oral-steroids
(accessed 16 November 2013).
How we can help you
We provide:
● a Freephone helpline providing information and emotional support 0808 808 5555
(9am–6pm Mondays–Thursdays; 9am–5pm Fridays) or information@lymphomas.org.uk
● information sheets and booklets about lymphoma (free of charge)
● a website with forums – www.lymphomas.org.uk
● the opportunity to be put in touch with others affected by lymphoma through our
buddy scheme
● a nationwide network of lymphoma support groups.
How you can help us
We continually strive to improve our information resources for people affected by lymphoma
and we would be interested in any feedback you might have on this article. Please visit
www.lymphomas.org.uk/feedback or email publications@lymphomas.org.uk if you have
any comments. Alternatively please phone our helpline on 0808 808 5555.
We make every effort to ensure that the information we provide is accurate but it should
not be relied upon to reflect the current state of medical research, which is constantly
changing. If you are concerned about your health, you should consult your doctor.
The Lymphoma Association cannot accept liability for any loss or damage resulting from
any inaccuracy in this information or third party information such as information on
websites which we link to. Please see our website
(www.lymphomas.org.uk) for more information about
how we produce our information.
© Lymphoma Association
PO Box 386, Aylesbury, Bucks, HP20 2GA
Registered charity no. 1068395
Updated: November 2013
Next planned review: 2016
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