INFORMATION SHEET STEROIDS (CORTICOSTEROIDS)

INTRODUCTION

This information leaflet is designed to answer common questions you may have
if you have been given steroids (corticosteroids) to treat your Crohn’s Disease or
Ulcerative Colitis (UC), the two main forms of Inflammatory Bowel Disease (IBD). It
is not intended to replace specific advice from your own doctor or any other health
professional. You can obtain further information from your doctor, pharmacist, the
information leaflet supplied with your medication or from the website:
www.medicines.org.uk.
Once your IBD is under control
(with steroids) life quickly
returns to normal. You realise WHY AM I BEING TREATED WITH THIS MEDICINE?
how much the steroids can help
Some types of steroids, known as glucocorticoids, can be very effective medicines
you to get your life back. at healing inflamed parts of the bowel. The immune system is important for
fighting infections, but sometimes immune cells attack the body’s own tissues and
trigger chronic inflammation (like that found in IBD). Steroids (glucocorticoids)
are one of the oldest treatments used in IBD. They work by reducing the activity
of cells in the immune system and blocking inflammation. Four out of five people
Barry, age 41 with IBD are likely to be treated with steroids at some time for their condition. The
diagnosed with Intermediate Crohn’s steroids used in IBD should not be confused with anabolic steroids, which are
Colitis in 2009
sometimes used by body builders to increase muscle mass.

WHAT ARE STEROIDS?

Steroids are hormones (chemicals) that are produced naturally from cholesterol
by the body’s adrenal glands (which sit on top of your kidneys). These hormones
have a number of important functions. They help regulate blood pressure
and the breakdown of carbohydrates and proteins and help the body adjust to
physical stress. In the treatment of IBD, steroid drugs are man-made versions of
glucocorticoids, that reduce inflammation and allow the bowel to heal.

HOW EFFECTIVE ARE STEROIDS IN IBD?

Treatment for IBD has two main goals – to lessen the symptoms of active disease
or a flare-up, and to maintain remission (a period of time where you have no
symptoms and feel well).

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STEROIDS

Studies show that steroids help to control both active Crohn’s Disease and active
UC. But research shows steroids do not help to maintain remission. Steroids are
therefore not used as long term maintenance therapy to prevent flare-ups. After
achieving remission, you may need other medications, such as 5 amino-salicylates
(5-ASA), azathioprine, or anti-TNF therapy in order to stay in remission. For more
information, see our drug information sheets. Steroids do not prevent IBD flares
following surgery.

While steroids are good at healing inflamed bowel, they are not recommended for
long term treatment due to their lack of effect in preventing flare-ups and their
side effects [see What are the possible side effects?] The aim for people with IBD
is to reduce and stop steroids and move on to alternative treatments as soon as
possible.

HOW ARE STEROIDS TAKEN?

There are several different types and formulations of steroids allowing these drugs
to be taken in a variety of ways. The choice depends on the location of your IBD
and severity of symptoms.

• Most commonly steroids are taken as tablets by mouth (orally).

• For severe flare-ups steroids are given intravenously (injected into a vein) to
achieve the quickest response. This only takes place in hospital. You will then be
switched to oral steroids.

• For IBD affecting the lower part of the colon and rectum, steroids can be given
as topical treatments that apply drugs directly to an affected area by enemas or
suppositories. Enemas use a specially designed applicator (containing the drug
as a liquid or foam) that is inserted into the anus (back passage) and reaches into
the colon. Suppositories are small ‘bullet-like’ capsules of drug inserted into the
rectum via the anus. One of the main advantages of topical treatments is their
ability to directly target inflamed area. This means other parts of the body are not
so affected, reducing side effects.

WHAT DIFFERENT NAMES ARE USED FOR STEROID MEDICATIONS?

Steroids have different brand names according to the companies making them.

• Steroids taken orally include prednisolone (brand names Deltacortril®,

Deltastab® and Dilacort®) prednisone, hydrocortisone (Plenadren®),
methylprednisolone (Medrone®), and beclometasone dipropionate (Clipper®).
Budesonide (Entocort and Budenofalk) is a newer type of oral steroid used in
Crohn’s Disease. The Budensonide Multi-Matrix system® (Cortiment® and
Uceris®) allows budensonide to be released throughout the colon. It is mainly
used for people with UC.
• Steroids given intravenously (by infusion into a vein) include hydrocortisone
and methylprednisolone.
• Steroids delivered directly to the site of inflammation with suppositories, foam
or liquid enemas include hydrocortisone(Colifoam®), prednisolone (Predfoam®)
and budesonide (Budenofalk®).

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 STEROIDS

WHAT IS THE NORMAL DOSAGE?

Your IBD team will advise you on the correct dose depending on the type of steroid
prescribed, your condition and weight. For prednisolone, for example, people
are usually started on 40 mgs (eight tablets a day) taken as a single dose in the
morning. But there can be considerable variations in doses prescribed. Talk to
your IBD team before making any changes to your dose or how you take it. People
with severe flare-ups admitted to hospital normally receive methyl-prednisolone 60
mg over 24 hours or four infusions of hydrocortisone (100 mgs each dose) every
day. Higher doses offer no greater benefits, but lower doses have been shown to
be less effective.

HOW SHOULD ORAL STEROIDS BE TAKEN?

It took me a few goes to If your condition allows, oral steroids should be taken in the morning. This helps
reduce my steroid dose as to reduce side effects and is less likely to affect your sleep. Budesonide tablets
and granules, as well as any delayed release or enteric coated steroids, should be
the symptoms kept coming
swallowed whole with a glass of water and taken around half an hour before food.
back and I had to return to the This is important because chewing can destroy the way the drug is delivered.
starting dose. But each time I
was able to get telephone advice
from my IBD nurse.
HOW LONG DO STEROIDS TAKE TO WORK?

Oral steroids normally improve symptoms within one to four weeks, while
intravenous steroids take four to 10 days. Around one in five people shows no
Lucy, age 45 response to steroid treatment (this is known as being steroid refractory). If your
diagnosed with Crohn’s Disease in condition is not improving, contact your IBD team.
2013
There are many reasons why steroids may not work including people not taking
them as prescribed and genetic differences. It could also be that your symptoms
are not caused by active IBD, but by a separate problem, such as underlying
infections (Cytomegalovirus, Clostridium difficile), or another condition, such
as irritable bowel syndrome (IBS) or lactose intolerance. If your symptoms are
definitely being caused by inflammation, but are not responding to steroids, then
your IBD team might suggest alternative treatments, such as biologic therapy
(infliximab, adalimumab or vedolizumab) or an immunosuppressant, such as
azathioprine. For more information, see our drug information sheets.

HOW LONG SHOULD I BE ON STEROID TREATMENT FOR?

Steroids should ideally only be used for a short period of time to get over a flare-up
or while long term treatments, such as azathioprine, become established.
If you are starting a course of steroids, then you should complete the full reducing
course, which is generally prescribed for eight weeks. You should NOT stop on
your own accord even if you are feeling better. If you have been using steroids
for more than a few weeks (or a week in the case of prednisolone 40 mg per day
or more) you will need to gradually reduce the dose before stopping completely.
Your IBD team will carefully guide you on this.

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WHY YOU SHOULD NOT SUDDENLY STOP TAKING STEROIDS

For steroid treatments lasting longer than a few days, it is VERY important not
to miss a dose, and to only stop treatment under medical supervision. This is
because after some days or weeks of taking steroids your body stops
making enough of its own steroids to maintain important functions (such as blood
pressure). A sudden withdrawal from medication may cause a sharp fall in blood
pressure and affect blood sugar levels. You will need to - ‘taper’(gradually reduce)
the dose to give your adrenal glands time to start making their own steroids again.
Generally, people will not need to ‘taper’ if they have taken steroids for less than
three weeks, but you should always consult your IBD team before stopping
treatment.

Unfortunately, sometimes when people reduce the dose of steroids their IBD
symptoms return (known as steroid dependence). If this happens you can be
offered other drugs, such as azathioprine, to help you come off steroids
completely.

HOW ARE STEROIDS USED IN ACUTE SEVERE ULCERATIVE COLITIS?

Intravenous steroids are considered to be the main treatment for patients with
severe UC, with studies showing they work in seven out of 10 patients who
have been hospitalised. Steroids have revolutionised the treatment of severe
UC. Responses to intravenous steroids take around two to four days (much
quicker than oral treatments). Response is assessed around day three, allowing
alternative drugs to be introduced (such as ciclosporin, infliximab or tacrolimus)
or surgery to be performed if steroids are not working. Once flare-ups have been
brought under control, people can be moved on to tablets, and in time (under the
supervision of their IBD team) start to ‘taper’ the dose.

WHAT IS BUDESONIDE?

Budesonide is a steroid developed more recently with special features to reduce

side effects. It has been designed to be broken down more completely by the
liver, reducing the amount of steroid in the blood affecting the rest of the body.
Budesonide is used for Crohn’s Disease; while the Budesonide MMX® delivery
system, a new type of tablet which extends the release of budesonide throughout
the colon, is generally used for UC.

While studies show budesonide is less effective than conventional oral steroids at
treating flare-ups, it has the advantage of causing fewer side effects. Bone loss
is reduced with budesonide, but not completely eliminated. Like other steroids,
budesonide is not effective at maintaining remission in IBD longterm, and is not
used in severe IBD.

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STEROIDS

WILL I NEED TO TAKE ANY SPECIAL PRECUATIONS WHILE BE ING

TREATED WITH STEROIDS?

• If you take a course of steroids you may be given a blue ‘steroid card’
providing details of the prescriber, drug, dosage and duration of treatment. This
should be carried with you at all times and given to any health professional
treating you. Also, consider wearing a Medic Alert Bracelet. If you were to
become unconscious health staff would immediately be aware your steroid
treatment needed to be continued and that the dose might need to be increased
temporarily.

• If you become ill, require surgery or have an infection, the dose of steroids
may need to be increased. This is because your body needs more steroids when
exposed to physical stress. Your body’s requirement for extra steroids when unwell
can persist for many months after a course of steroid treatment, especially if the
course is prolonged or has to be repeated.

• Because steroids damp down your immune response, you should avoid people
with chickenpox, shingles and measles. You could become seriously ill from these
conditions. Tell your doctor promptly if you have come into contact with anyone
who has these conditions as you may be able to have a protective injection.

• Also, even mild infections, such as a cold or sore throat, may develop into a
more serious illness. Contact your doctor if you have not been able to shake off an
infection.

ARE THERE ALTERNATIVES TO STEROIDS?

Enteral nutrition (a special liquid only diet) can be used as an alternative to

steroids to induce remission. People on this diet do not need to eat ordinary food
or drink because the liquid diet provides them with all the necessary nutrients they
need. [For more information see our booklet: Food and IBD: Your Guide.] This
approach can be especially helpful for children when there are concerns steroids
could affect growth. In adults, studies show steroids work better at inducing
remission than enteral therapy, but liquid diets or supplements may be used to
support nutrition. If you prefer to try the liquid diet approach discuss this with your
IBD team.

For people with IBD affecting the colon who cannot tolerate steroids (or wish to
avoid them) 5 amino-salicylates (5-ASA) can be considered in some
circumstances, but are generally less powerful. For people who can not come
off steroids (because their symptoms return when they stop treatment) biological
treatments or immunosuppressants can be considered. For more information, see
our drug information sheets.

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 STEROIDS

WHAT ‘CHECKS’ WILL I NEED FOR LONG TERM STEROID

TREATMENT?

• Blood pressure and weight should be measured regularly, and children will
need growth checks.

• You may be offered blood tests to check your potassium level and for raised
blood sugar and triglycerides after starting steroid treatment and then every few
months.

• You should visit an optometrist every six to 12 months to check for glaucoma
(a condition increasing pressure within the eye that can damage the optic nerve)
and cataracts.

• People taking steroids long term will be monitored for adrenal suppression.
The side effects I’ve experienced
include heart palpitations, being
ratty and the dreaded moon WHAT SPECIAL INFORMATION SHOULD YOU GIVE YOUR DOCTOR?
face. The sleepless nights were
annoying, but nothing that I Make sure you tell doctors and nurses treating you about any of the following:
couldn’t handle. • Infections. Oral steroids can both make infections more severe and mask
symptoms of infections. Also let them know if you have had Tuberculosis (TB) in
the past or been in contact with someone with TB.

• Liver problems. Levels of steroids in the blood may be increased if your liver is
not working properly.

Rachel, age 25 • Psychiatric disturbances. If you have a pre-existing mental illness (including
diagnosed with Crohn’s Disease in psychosis, severe depression or bipolar disorder) or a predisposition to mental
2015 health problems (such as a family history of depression).

• If you have wounds from recent surgery or are going to have surgery soon.
Steroids can delay healing.

• Pre-existing conditions, including heart failure, a recent heart attack,

high blood pressure, diabetes, epilepsy, glaucoma, an underactive thyroid,
osteoporosis, obesity or peptic ulcers. Steroids can make some conditions
worse so your medical team may need to monitor your condition more closely.
In patients with diabetes, for example, steroids can increase blood sugar levels
leading to the need to adjust medications.

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 STEROIDS

WHAT ARE THE POSSIBLE SIDE EFFECTS?

Although steroids are produced naturally by the body, steroid medications can
cause unwanted side effects. Studies suggest around one in two people taking
steroids experience side effects. Side effects can be minimized by using the
lowest effective dose of steroids for the minimum period, and sometimes by taking
the medication in the morning.

The side effects of steroids can be divided into three main categories. Early
effects due to the body being exposed to higher than natural levels of steroids;
effects due to prolonged use; and effects due to coming off steroids.
Always speak to your IBD nurse
if you have any concerns or • Early effects include insomnia, cosmetic effects (acne, moon face, growth
side effects. They see lots of of facial hair, and stretch marks), retention of salt (which can lead to ankle
people with IBD and have lots of swelling and raised blood pressure), mood disturbance, indigestion and glucose
intolerance.
valuable experience.
• Effects due to long term use include increased susceptibility to infections,
appetite stimulation (which can cause weight gain), cataracts, osteoporosis,
problems with blood supply to the top of the thigh bone, and myopathy (muscle
Barry, age 41 weakness).
diagnosed with Indeterminate Crohn’s
Colitis in 2015 • Effects due to coming off steroids include adrenal insufficiency (where your
body is not producing enough steroids). Here symptoms include fatigue, loss of
appetite and weight loss, abdominal pain, nausea and vomiting, headache, joint
pains, dizziness and fever.

• In babies, children and adolescents steroids can affect growth. Studies

also suggest around one in 11 IBD patients are allergic to one or more steroid
medications.

This is not a complete list of side effects of steroids, for more information see the
Patient Information Leaflet provided with your medication, or visit www.medicines.
org.uk/emc/. Overall, it is best to let your doctor or IBD nurse know about any
new symptoms you develop while on steroids whenever they occur. Your IBD team
should also be able to help with any queries and concerns.

WHEN SHOULD I SEEK MEDICAL HELP?

People taking steroids can on rare occasions require urgent medical attention. You
should contact your doctor:

• If you experience mental health problems, feel depressed, high, or your moods
go up and down. Contact your doctor if you feel confused, irritable, anxious, have
suicidal thoughts or difficulties sleeping.

• If you have been vomiting and you are unable to take your tablets, or have
diarrhoea, or have missed a dose.

• If you experience an allergic reaction including a rash, itching, difficulty

breathing or swelling of the face, lips, throat or tongue.

• If you develop pain in the hip or groin.

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STEROIDS

SHOULD I BE DOING ANYTHING TO PROTECT MY BONES FROM

OSTEOPOROSIS?

Steroids can affect bones by decreasing the rate at which the bone-building cells
work, which accelerates bone loss. How seriously the bones are affected usually
depends on the dose and length of steroid treatment. Guidelines recommend an-
yone prescribed steroids should take Vitamin D and calcium supplements to help
their bones. They also state that bisphosphonate drugs (which slow down the cells
which break down bone) should be considered for anyone over 65 years who has
been taking steroids for longer than three months and younger people with low
bone density (DEXA) scores. Bisphosphonates can cause skeletal abnormalities in
foetuses, making it important for women of child-bearing years taking these drugs
to avoid becoming pregnant. Older people using steroids could take the opportu-
nity to get their bone density measured. Steroids taken rectally (in enemas or sup-
positories) and budesonide are less likely to cause bone weakness than steroids
taken by mouth or intravenously.

To help maintain healthy bones you can introduce a number of life style changes
including stopping smoking, increasing weight bearing exercise (jogging and brisk
walking) and limiting alcohol intakes. For more details see our information sheet
Bones and IBD.

DO STEROIDS AFFECT PREGNANCY AND FERTILITY?

Tell your doctor if you are thinking of becoming pregnant or find you are pregnant,
and you are taking steroids. Because they are an effective treatment, many ex-
perts now feel steroids can be taken during pregnancy as there may be a greater
risk to the baby if the woman does not take effective treatment and is unwell from
her IBD. Studies suggest active IBD at the time of conception and delivery may
increase adverse outcomes, including spontaneous abortion and pre-term
delivery, making it important to have effective treatment for active IBD.

Guidelines consider steroids taken during pregnancy to be of low risk to babies.

While steroids can cross the placenta to reach the baby they rapidly become
converted to less active chemicals.

Experts prefer prednisone, prednisolone, and methylprednisolone since they are

more efficiently broken down by the placenta than dexamethasone or
betamethasone. Maternal prednisolone doses of up to 40 mg daily are
considered unlikely to affect the baby.

While some studies have shown a small increase in the risk of cleft lip and palate
in babies born to women taking steroids in the first three months of pregnancy,
other studies have not reported this finding. Palate formation is complete by
week 12 so there are no risks of cleft lip and/or palate after this. Less is known
about budesonide, but a small study of eight pregnant women did not find an
increased risk of adverse outcomes.

There have been isolated reports of babies born with adrenal suppression when
mothers took steroids late in pregnancy. So if you are taking steroids at the time
of delivery be sure to let your health care team know as your baby may need a
tapering course of steroids after birth.

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In women taking steroids for other conditions (not IBD), an increase in maternal
pregnancy complications (such as high blood pressure and diabetes) have
occasionally been seen.

WHAT IS KNOWN ABOUT FATHERING A CHILD WHILST ON

STEROIDS?

Much less is known about the effects of long-term steroids on male fertility and ef-
fects on their offspring. One study showed steroids can cause reversible decreas-
es in sperm counts and motility, another found no link between steroid treatment
and infertility.

WHAT ABOUT BREAST FEEDING AND STEROIDS?

Steroids are generally considered safe for use by breast feeding mothers. Al-
though a small amount of the drug may pass to the baby, studies have found no
harmful effects. Recommendations suggest that where possible women (especial-
ly those on high doses) should wait four hours after taking steroids before breast
feeding.
High doses of steroids used in other conditions have occasionally led to temporary
loss of the mother’s milk supply.

CAN I TAKE OTHER MEDICINES ALONG WITH STEROIDS?

Before you take any new medicines, check with your IBD team or pharmacist
whether there could be an interaction with steroids. This also applies to any over-
the-counter medicines and any herbal, complementary or alternative medicines
and treatments. You should tell any doctor or dentist treating you that you are
taking steroids.

Some key drugs that interact with steroids include anticoagulants (such as warfa-
rin), drugs for blood pressure, antiepileptics, antidiabetic drugs, antifungal drugs,
bronchodilators (such as salbutamol) and diuretics.

Studies suggest taking steroids with aspirin and nonsteroidal anti inflammatory
drugs (NSAIDs), such as ibuprofen, increases the risk of peptic ulcers. If you need
both medications, ask your IBD team if you might benefit from taking proton pump
inhibitors as well to help prevent ulcers.

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STEROIDS

CAN I HAVE IMMUNISATIONS WHILE ON STEROIDS?

If you are taking steroids it is recommended that you avoid live vaccines, such
as polio, yellow fever, BCG (tuberculosis), rubella (German measles) and MMR
(measles, mumps and rubella). As a rule you should avoid live vaccines from three
weeks before starting steroids and then for three to six months after steroids have
been discontinued. You should also avoid coming into contact with anyone who
has recently received a live vaccine as there is a chance the infection could be
passed to you.

When first diagnosed with IBD, your doctor should take an immunisation history,
and if any gaps are identified, you should be offered ‘catch up’ vaccinations.

Once on steroids you will still be able to take inactivated vaccines, such as hep-
atitis A, and, typhoid (but not the oral active typhoid vaccine). Guidelines recom-
mend an annual flu vaccination (with the inactivated vaccine) for people with IBD
regardless of whether or not you are taking immunosuppressant drugs. It should
be noted that the new nasal spray flu vaccine for children contains live forms of
the flu virus and should not be used. Vaccines against pneumonia (such as Pneu-
movax®) should also be considered.

If vaccinations are required for travel sometimes a judgment needs to be made

with your IBD team about whether the risks of the disease (you are being vacci-
nated against) outweigh the risks from live vaccination. It is important not to have
any vaccinations during or after steroid treatment without consulting your IBD
team. For more details see our information sheet: Travel and IBD.

CAN I DRINK WHILE TAKING STEROIDS?

Stomach problems may be more likely to occur if you drink alcohol while being
treated with steroids. Talk to your IBD team about whether it is safe for you to
drink alcohol while taking these medicines. For general health reasons it is best
to keep within the Department of Health guideline limits.

WHO SHOULD I TALK TO IF I AM WORRIED?

If you are worried about side effects such as those described above, or have other
questions about your steroid treatment, discuss them with your doctor or IBD
team. They should be able to help you with queries such as exactly why it has
been prescribed for you, what the correct dose and frequency is, what monitoring
is in place, what you should do if new symptoms occur, and also what alternatives
may be available.

You can find more information about other drugs used in the treatment of IBD
from our other Drug Treatment Information leaflets. You can download all our
information sheets and booklets for free from our website:
www.crohnsandcolitis.org.uk.

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STEROIDS

FURTHER HELP

All our information sheets and booklets are available to download from our
website: www.crohnsandcolitis.org.uk. If you would like a printed copy, please
contact our Information Line – details below.

Crohn’s and Colitis UK Information Line: 0300 222 5700, open Monday to
Friday, 9 am to 5 pm, except Thursday open 9 am to 1 pm, and excluding English
bank holidays. An answer phone and call back service operates outside these
hours. You can also contact the service by email [email protected]
or letter (addressed to our St Albans office). Trained Information Officers provide
callers with clear and balanced information on a wide range of issues relating to
IBD.

Crohn’s and Colitis Support: 0121 737 9931, open Monday to Friday, 1 pm
to 3.30 pm and 6.30 pm to 9 pm, excluding English bank holidays. This is a
confidential, supportive listening service, which is provided by trained volunteers
and is available to anyone affected by IBD. These volunteers are skilled in
providing emotional support to anyone who needs a safe place to talk about living
with IBD.

Crohn’s and Colitis UK Forum

This closed-group community on Facebook is for everyone affected by IBD.
You can share your experiences and receive support from others at:
www.facebook.com/groups/CCUKforum

© Crohn’s and Colitis UK 2016

Steroids Edition 1
Last Review - June 2016
Next full review planned - 2019

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 STEROIDS

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