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Drugs used

in IBD

Improving life for people affected


by inflammatory bowel diseases
www.crohnsandcolitis.org.uk
Drugs used in IBD Edition 5 – March 2014
2 Drugs used in IBD

About this booklet


Crohn’s Disease and Ulcerative Colitis are the two main
forms of Inflammatory Bowel Disease (IBD). If you have
IBD, your doctor is likely to prescribe drugs as part of your
treatment. Knowing more about treatment options can
help you to feel better informed and able to take a more
active role in decisions about your care. This booklet aims
to answer some of the questions most often asked about
IBD drugs and medicines. We hope you will find it helpful.
All our publications are research based and produced in
consultation with patients, medical advisers and other
health or associated professionals. However, they are
prepared as general information and are not intended to
replace specific advice from your own doctor or any other
professional. Crohn’s and Colitis UK does not endorse or
recommend any products mentioned.

About Crohn’s and Colitis UK


We are a UK-wide charity established in 1979. Our aim
is to improve life for anyone affected by Inflammatory
Bowel Diseases. We have over 30,000 members and
70 Local Groups throughout the UK.
Membership costs £15 a year. Free membership is
available for 16-18 yr olds, students, and people over 65.
People on lower incomes may join at a reduced rate.
We do not charge for copies of this booklet, but we do
need funds to be able to produce it. Please consider
making a donation or becoming a member of Crohn’s
and Colitis UK. To find out how call 01727 734465 or visit
www.crohnsandcolitis.org.uk
Drugs used in IBD 3

Contents
Introduction
About IBD 04
Why are drugs used in IBD? 06
What types of drugs are used in IBD? 07
Why do some drugs have several names? 08
Why do some drugs come in different forms? 09

Drugs used in IBD


Anti-inflammatory Drugs 12
Symptomatic Drugs 30
Antibiotics 33

Other Common Questions


Can other medicines affect IBD drugs? 35
Can IBD drugs affect fertility or pregnancy? 36
Does it matter if I forget to take my drugs? 37
Can I alter the dose myself? 38
How safe are IBD drugs? 39
Can I take part in clinical trials? 39
Who can I talk to about my treatment? 40
Help and support from Crohn’s and Colitis UK 41
Other useful organisations 42
4 Drugs used in IBD

Introduction
About IBD
Crohn’s Disease and Ulcerative Colitis (UC) are the two main
forms of Inflammatory Bowel Disease (IBD). In IBD, sections of
the digestive system (which is also known as the gut and which
includes the intestines or ‘bowels’) become sore and inflamed.
Crohn’s can affect any part of the digestive system from the
mouth to the anus. UC affects the rectum and often extends
into the colon (large intestine).

IBD is a chronic condition, which means that it is ongoing and


usually lasts throughout your life. It can change unpredictably
– you may have times of good health, called remission, when
there are few or no symptoms, alternating with times when your
symptoms are more active, called relapses or ‘flare-ups’. It is
also a very individual condition. Some people may relapse only
occasionally although others may have more frequent flare-ups
and are generally more seriously affected.

The diagram opposite shows the main features of the digestive


system, including the areas most likely to be affected by IBD.
Drugs used in IBD 5

The digestive system

oesophagus

liver
stomach
gall bladder

pancreas

small large
intestine intestine
(colon)
ileum

rectum
anus
6 Drugs used in IBD

Why are drugs used in IBD?


If you have IBD your doctor or IBD nurse is
likely to prescribe medication (drugs) as part
of your treatment. We do not yet know what
causes IBD, so these drugs are not cures,
but they can be very effective in treating
your symptoms.
Initially, the aim of the drug treatment will be reduce the
inflammation in your gut to give you relief from symptoms
and induce (bring about) remission. This is sometimes called
induction therapy. Once your condition is under control,
your doctor will usually continue to prescribe drugs to help
maintain remission and prevent a relapse. This is called
maintenance therapy.
Drugs used in IBD 7

What types of drugs are used in IBD?


The main types of drugs commonly used in IBD are:

Anti-inflammatory drugs:
These stop or damp down the inflammation typical of IBD.
They include:
• aminosalicylates (5-ASAs)
• corticosteroids, often just called steroids
• immunosuppressants
• biologics or ‘anti-TNF’ drugs.

Symptomatic drugs:
These are used to help reduce symptoms such as diarrhoea,
constipation or pain, but cannot reduce the inflammation. They
may include antidiarrhoeals, laxatives, anti-spasmodics, and
analgesics (painkillers).

Antibiotics:
These are used to treat and in some cases prevent bacterial
infections. They tend to be used for Crohn’s Disease rather than
for UC.

These drugs are covered in more detail in the sections starting


on page 12.
8 Drugs used in IBD

Why do some drugs have several names?


Generic and brand names
Every drug has an approved generic or medical name, decided on
by an expert committee. Many drugs are also known by a brand
or trade name chosen by the pharmaceutical company making
and selling that drug as a medicine. So, for example, the drug
infliximab (generic name) is also known as Remicade (brand name).

Some drugs are sold in a generic form as well as in a branded


form. If several companies market a drug, it will have several
different brand names.

Does it matter which I have?


Medicines usually contain inactive ingredients as well as the main
active ingredient, the generic drug. These help to formulate the
medicine, that is, to make it into its tablet, cream or liquid form.
They can also be used, for example, to give tablets a particular
colour or affect how long the tablets take to dissolve in the gut.

Usually, for most prescription medicines, such small differences are


unlikely to create any problems. Whether you are prescribed the
branded medicine or a generic version of a drug, provided your
dose contains the same amount of active ingredient your medicine
should have the same therapeutic effect.

However, for a very small number of drugs, the differences in


formulation may be more significant. For example, some of the
different brands of mesalazine work in a slightly different way.
For this reason your doctor may decide to prescribe a particular
brand rather than the generic version. (See Aminosalicylates for
more detail.)
Drugs used in IBD 9

Why do drugs come in different forms?


Some of the drugs and medicines
prescribed for IBD come in several different
forms – for example as tablets, as granules,
or as a liquid or foam.
This is so that they can be taken in the way that helps them to
work most effectively. This is usually orally (by mouth) but may
be topically (applied directly) or by injection. Which way is best
will depend partly on the area of the gut affected by your IBD
and partly on the nature of the drug itself.

Oral Drugs
Most of the drugs used for IBD have a tablet, capsule or
granule form, so can be taken by mouth. Many people with
IBD find this a convenient way to take their medication and
it is easy for a doctor to change dosage levels if necessary.
However, anything taken by mouth will start to dissolve very
quickly, so many of the tablets and capsules have a special
’gastro-resistant’ coating. This makes sure the drug is released
in the right part of the digestive system – usually the small
intestine (small bowel) or large intestine (colon). This is why it
can be important to swallow tablets or capsules whole and
not to break or crush them.
10 Drugs used in IBD

Topical treatment
Taking a drug topically means applying it directly to the
affected part of the body. This can mean that the drug works
more efficiently. Another advantage can be that other parts of
the body are not so readily affected by the drug, and this can
reduce possible side effects.

In IBD, topical treatment is usually most appropriate when


the inflammation is in the rectum (a condition often known
as proctitis) or near the end of the colon.

One way of delivering topical treatment to inflammation in


these areas is to use a suppository. This is a small bullet-shaped
capsule of the drug in a waxy like substance that will dissolve at
body temperature. The suppository is inserted directly through
the anus (back passage) into the rectum. As it dissolves, it
releases the drugs in exactly the right area.

Another way of getting a drug directly into the rectum and


colon is to take it as an enema – in a liquid or foam form, put
into the rectum through the anus using a specially designed
applicator. Foam enemas are often easier to retain than liquid
enemas so can be particularly useful at the beginning of a
flare-up, when the gut is most sensitive. Liquid enemas can
usually travel further along the colon, so will reach more of the
inflammation, especially if taken just before lying down.

Both steroids and aminosalicylates (5-ASAs) are sometimes


given topically, using a suppository or enema.
Drugs
Crohn’s
usedDisease
in IBD 11
9

If the inflammation is on the surface of the skin, an ointment


or cream may be helpful. Tacrolimus, an immunosuppressant
is available in ointment form and may be used to treat
peri-anal Crohn’s.

Injections and infusions


Some drugs are injected subcutaneously (under the skin),
intramuscularly (into a muscle) or intravenously (into a vein).
Intravenous injections are often given through a drip using an
infusion (a dilute form of the drug). Biologics such as infliximab
and adalimumab cannot be taken orally so are always given by
injection. Steroids and some immunosuppressants may be also
injected intravenously to get a quick response in someone
having a severe flare-up.
12 Drugs used in IBD

Drugs used in IBD


Anti-inflammatory Drugs
Aminosalicylates (5-ASAs)
Aminosalicylic acids are also known as 5-ASAs. They are
chemically related to aspirin, and work by damping down the
inflammatory process, so allowing damaged tissue to heal.

There are several types of 5-ASA drugs:


• sulphasalazine (brand name Salazopyrin)
• mesalazine (Asacol, Ipocol, Octasa, Pentasa, Salofalk and
Mezavant). This 5-ASA comes in different formulations which
target slightly different parts of the digestive system. Asacol,
Ipocol, Octasa and Salofalk tablets and granules have a special
coating that dissolves at a certain pH (acidity) in the gut. This
means that they work best in the last part of the small intestine
and the beginning of the colon. Pentasa tablets and granules
work throughout the gut. Mezavant tablets release their
mesalazine as they pass through the large intestine (colon).
• olsalazine (Dipentum) and balsalazide (Colazide). These 5-ASAs
also work best in the large intestine (colon).
Drugs used in IBD 13

How are these 5-ASAs used in IBD?


5-ASAs are often used to treat mild to moderate flare-ups of UC.
They may then be prescribed to maintain remission and help
prevent flare-ups on a longer term basis.

The use of 5-ASAs for Crohn’s Disease is more controversial.


Some 5-ASAs may help to control mild Crohn’s in the ileum and
colon. However, there is little evidence that 5-ASAs are effective in
maintaining remission, although they may help reduce the chance
of Crohn’s reoccurring after surgery. 5-ASAs are not recommended
for severe Crohn’s.

Some people with IBD have a slightly increased risk of developing


colon cancer, and another possible benefit of using 5-ASAs long-
term is that they may decrease this risk. So, if you have UC or
Crohn’s Colitis your doctor may advise you to continue to take
a 5-ASA indefinitely. For more details see our information sheet,
Bowel Cancer and IBD.

“When they said you have to


keep taking them every day,
I thought, ‘what a drag!’ –
but you get into the habit and
they do seem to be keeping
my UC at bay...” Gary
14 Drugs used in IBD

How do I take 5-ASAs?


As explained above, some 5-ASAs work best in certain parts
of the gut, so you may be prescribed a particular type or brand
depending on where you have the inflammation. Many specialists
in IBD believe that if a particular brand or type of 5-ASA is
working well, you should not be switched to another without
a good clinical reason.

Oral mesalazine is often prescribed in two or three doses during


the day. However, recent evidence suggests that taking these
together in a single daily dose can be just as effective, and there
are once-a-day brands available. If you feel this could be helpful
for you, discuss this with your doctor.

Some 5-ASAs come as suppositories or enemas so may be useful


if you have proctitis (inflammation of the rectum) or inflammation in
the end of your colon.
Drugs used in IBD 15

Can 5-ASAs have side effects?


Like all drugs, 5-ASAs can have side effects, although
not everyone will get them, and some are quite rare. They
can include:
• nausea, vomiting, and watery diarrhoea
• headache and indigestion
• mild allergic reactions with rash, itchiness and fever
• less commonly, problems with the kidneys, liver, lungs
and pancreas.

Sulphasalazine can cause male infertility by reducing the sperm


count, but this usually resolves once the drug is stopped. See
our information sheet: Fertility and IBD. Sulphasalazine can also
reduce the body’s ability to absorb folates (B vitamins) which
are essential for blood cell formation. Some people taking
sulphasalazine may need a folic acid supplement.

It is usual to have regular blood tests while on 5-ASA treatment,


especially when you first start taking the drug, to check for any
unwanted side effects. You may have, for example, a blood test
every three months for a year, then every six months or even
annually. If you are taking sulphasalazine you may need slightly
more frequent blood tests.

As for all drugs and medicines, if you are concerned about side
effects or any new symptoms you experience while on 5-ASAs,
contact your doctor or your specialist IBD team.
16 Drugs used in IBD

Corticosteroids (Steroids)
Corticosteroids are often just called steroids. They are closely
related to cortisol, a hormone produced naturally in the adrenal
gland. They act on the immune system (the body’s protection
system against harmful substances) and work by blocking the
substances that trigger allergic and inflammatory responses.
This means that they can reduce the redness, swelling and pain
of the type of inflammation found in IBD.

A range of corticosteroids are used in IBD. They include:


• prednisolone, prednisone, hydrocortisone and
methylprednisolone. These are sometimes known as the
‘conventional corticosteroids’.
• budesonide (Entocort or Budenofalk). This is a newer type of
steroid which has a local anti-inflammatory effect at the end of
the small bowel (ileum).
• beclometasone dipropionate (BDP) (Clipper).

Fact: The steroids used in IBD are corticosteroids.


They are not the same as anabolic steroids
(the type of steroids sometimes used by athletes
and bodybuilders).
Drugs used in IBD 17

How are these steroids used in IBD?


Steroids such as prednisolone, prednisone, and hydrocortisone are
used to treat acute attacks of UC or Crohn’s. They are generally
very effective at bringing symptoms under control – as many as
eight out of 10 people respond to treatment with steroids. People
often notice an improvement in their symptoms within days of
starting the drug.

These steroids can be given by injection, as tablets, or topically.


When injected or taken by mouth, they can reduce inflammation
throughout the whole body. So they can be used to reduce
inflammation in the eyes, skin and joints, if affected, as well as in
the gut.

While such a wide ranging effect can be very helpful, sometimes


a more targeted approach is needed. Budesonide is a new type
of steroid which is very active in the gut, but then broken down
more quickly, so should affect the rest of the body less than the
conventional corticosteroids. It is mainly used to treat Crohn’s
disease of the ileum (the end of the small intestine) and the
beginning of the large bowel. It can also be helpful for
Collagenous Colitis (a slightly different form of inflammatory
bowel disease).

Beclometasone dipropionate (also known as BDP or Clipper) is


used only for UC. It is usually taken together with a 5-ASA (such
as mesalazine) but for a shorter period of time. Like 5-ASAs, BDP
tablets have a special coating so the drug can reach the targeted
area of inflammation without first dissolving in the stomach. This
should mean less of the steroid enters the bloodstream to reach
the rest of the body, and this can help reduce side effects.
18 Drugs used in IBD

Coming off steroids


Although they are very effective at bringing symptoms under
control, steroids cannot prevent flare-ups and often have rather
strong side effects, so are not used for maintenance treatment.
So, once you begin to feel well, your doctor will start to reduce
your steroid dose. This has to be done gradually, especially if you
have been on steroid treatment for more than a few weeks.

This is because corticosteroids are very similar to the naturally


occurring hormone, cortisol, and when you take steroids as
medicine your adrenal glands reduce or stop cortisol production.
This is known as adrenal suppression. If you suddenly stop your
steroid treatment, it may take some time before the adrenal glands
start producing cortisol normally again. This could leave you with
much lower levels of cortisol in your body, which can mean that
your body does not respond so well to stressful situations, causing
nausea, fatigue and light-headedness.

Unfortunately, sometimes the symptoms return when you reduce


the dose. If this keeps happening, immunosuppressant drugs (see
below) may be added to help you come off steroids completely.

Key Tip: You will need to tell any doctor


treating you that you are on steroid treatment.
Carry a card showing the dose of steroids you
are taking and the date treatment began. It can
also be a good idea to wear a medical identity
bracelet or necklace.
Drugs used in IBD 19

What are the possible side effects of steroids?


Although steroids are naturally present in the body, the high
doses needed to control inflammation can have unwanted side
effects. Most people will experience at least some of these side
effects, which can be off-putting. However, steroids can be
very effective at controlling flare-ups and many of these side
effects usually disappear when the dose is reduced or stopped.
The challenge is to get the greatest possible benefit with the
fewest side effects and it is best to discuss this carefully with
your IBD specialist.
Temporary side effects can include:
• an increase in appetite which can lead to weight gain
• rounding or ‘mooning’ of the face, growth of facial hair
• development or worsening of acne
• an increase in blood sugar level and salt retention –
so legs may swell
• mood changes and problems with sleeping and/or concentrating
• a reduced ability to cope with infections
• more rarely, pain in the chest or upper abdomen.

Longer term side effects may include:


• thinning of the bones, muscles and skin
• a tendency to bruise easily
• diabetes due to increased blood sugar levels
• after longstanding treatment with steroids, problems with
natural cortisol production
• more rarely, glaucoma or cataracts.
20 Drugs used in IBD

“My consultant put me


on steroids, this time,
Budesonide, and wow –
I felt like I’d got my
life back.” Tom

You will be regularly monitored while you are being treated with
steroids. If you are concerned about any side effects or have any
queries about new symptoms you experience, talk to your doctor
or specialist IBD team. You may also be prescribed supplements,
for example of vitamin D and calcium to help combat the bone
thinning effects of steroids. For more details see our information
sheet Bones and IBD.
Drugs used in IBD 21

Immunosuppressants
As their name suggests, immunosuppressants suppress (reduce
the effectiveness of) the immune system (the body’s protection
system against harmful substances). They are helpful in IBD
because, in doing so they also reduce levels of inflammation.

The main immunosuppressants used in IBD include:


• azathioprine (Imuran) and mercaptopurine or 6-MP (Puri-nethol)
• methotrexate
• mycophenolate mofetil
• ciclosporin
• tacrolimus.

How are these immunosuppressants used in IBD?


Immunosuppressants are mainly used when treatment with
steroids and 5-ASAs has failed to control the inflammation, or
when steroids cannot be withdrawn without causing a relapse.
If someone who is dependent on their steroid treatment in this
way starts taking an immunosuppressant as well, they can often
gradually reduce or even stop taking the steroids without
worsening the inflammation. This is why immunosuppressants
are sometimes called ‘steroid-sparing’ drugs.

The various immunosuppressants work slightly differently. Your


doctor will talk you through the benefits and possible side effects
of the one they are recommending for you. Make sure they know
about any previous illnesses and about any new symptoms you
notice once you start your treatment.
22 Drugs used in IBD

Azathioprine and mercaptopurine


These two drugs are closely related chemically and work in a
similar way. Azathioprine is used more commonly in the UK, while
mercaptopurine (sometimes called 6-mercaptopurine or 6-MP) is
more wide prescribed in the USA.

They have been used to treat IBD for many years and have been
shown to be very effective at reducing symptoms and maintaining
remission in both Crohn’s and UC. However, they act slowly and it
may be several months before you notice any benefit.

Because azathioprine and mercaptopurine are


immunosuppressants and affect the way the immune system
works, people taking them tend to be more susceptible to
infections, such as cold and flu. So you will be advised to have
an annual flu vaccination. You may also need an extra vaccination
against infectious diseases such as measles, chickenpox or
shingles, and some forms of pneumonia as these illnesses can
be more severe in people on immunosuppressants.

These drugs also increase the skin’s sensitivity to sunlight and the
risk of developing some types of skin cancer, so it is best to use
sunblock and to avoid sunlamps or sunbeds.

“When I started on Azathioprine


I was a bit concerned about
keeping out of the sun and so on,
but I’ve been on it for four years
now, no side effects yet, and my
employers are really good about
time off for check ups.” Patrick
Drugs used in IBD 23

Other side effects of azathioprine and mercaptopurine


can include:
• especially at first, nausea, or a flu-like illness with fever, and
general aches and pains
• a sudden worsening of diarrhoea
• less commonly, inflammation of the liver, and/or the pancreas
(pancreatitis) anaemia
• suppression of the bone marrow function which can lead
to anaemia
• a slightly increased risk of developing lymphoma (a type of
cancer affecting the lymph glands). However, research suggests
that for most people taking these drugs the risk is very small
and likely to be outweighed by the potential benefits.

For more details, see our drug treatment information sheet,


Azathioprine and Mercaptopurine.

Regular monitoring is important for people taking


immunosuppressants. At first you will need frequent blood
tests, usually weekly or fortnightly. As you become used
to the treatment you will probably move to having a blood
test every two to three months, for as long as you are on
azathioprine or mercaptopurine.
24 Drugs used in IBD

Methotrexate
Methotrexate is used to help bring about and maintain
remission in people with Crohn’s who are steroid dependent
(cannot stop steroid treatment without having a relapse) and
who do not respond well to azathioprine or 6-MP. Occasionally,
it is used to treat UC, but there is there less evidence of its
effectiveness for this condition.

Methotrexate is taken only once a week, as tablets or by


injection. Like azathioprine, is slow acting and it may take up
to three months before symptoms improve.

As an immunosuppressant, methotrexate can cause a greater


susceptibility to infections. It also increases the skin’s sensitivity
to sunlight and the risk of developing some types of skin cancer.

Other side effects can include:


• nausea and diarrhoea, especially at the beginning of treatment
• more rarely, suppression of the bone marrow production
• liver and kidney problems.

If you are a woman it is important not to become pregnant while


you or your partner are taking methotrexate, as it can have serious
effects on the unborn baby. You should stop taking methotrexate
at least six months before trying to conceive.

For more details, see our drug treatment information sheet,


Methotrexate.

You will need to have blood tests and tests to check liver and
kidney function before starting methotrexate, and then regular
blood tests while you continue on methotrexate treatment.
Drugs used in IBD 25

Mycophenolate mofetil
Mycophenolate mofetil has been used for many years for cancer
treatment and after organ transplants. More recently it has been
used for people with IBD who do not respond well to other
immunosuppressants or biologics. Some studies have found it
to be effective in bringing about steroid-free remission, but
more research is needed in this area.

The possible side effects are similar to those with methotrexate


and you will need regular blood checks.

Ciclosporin
Ciclosporin is used widely for preventing the body’s rejection of
organ transplants. It is also useful in various conditions caused
by a reaction of the body against its own tissues. In IBD,
ciclosporin is generally used to treat severe UC flare-ups and
may help to avoid or delay surgery to remove the large bowel.
It can be a useful treatment while a slower acting drug, such as
azathioprine, is building up its effectiveness.

Ciclosporin is usually given intravenously and in hospital to


begin with, but may then be given as an oral preparation
(in capsule or as a drink), over a period of three to six months.

Ciclosporin can cause a number of side effects including:


• nausea, headache, tingling of the hands or feet
• growth of hair on the face
• swollen gums
• reduced kidney function (usually temporary) and a rise in
blood pressure.

You will be given regular blood and kidney function tests while
you are being treated with ciclosporin – probably weekly at first,
and then about once a month.
26 Drugs used in IBD

Tacrolimus
Tacrolimus is similar in action to ciclosporin but may be used
for severe Crohn’s as well as for UC. It works quickly and can
be taken with azathioprine until this slower acting drug
becomes effective. Tacrolimus can be taken orally from the
start so does not necessarily require a hospital stay. It is also
available as an ointment and may be helpful for Crohn’s in the
anal area and UC in the rectum.

Tacrolimus taken orally tends to have side effects similar to


those of ciclosporin.

“I was advised to go
on infliximab after
a flare-up that lasted
six months. It wasn’t a
decision I took lightly,
but it was the right one
for me, and saved me
from surgery.” Rachel
Drugs used in IBD 27

Biologics (Anti-TNF Drugs)


Biologics are the newest group of drugs to be used in IBD.
They are sometimes called ‘anti-TNF’ drugs because most of
them work by targeting a protein in the body called TNF-alpha.
Your body naturally produces TNF-alpha as part of its immune
response, but it is thought that over-production of TNF-alpha
is partly responsible for the chronic inflammation found in IBD.
Anti-TNF drugs bind to TNF-alpha, helping to prevent
inflammation and relieve the symptoms of IBD.

The two most commonly used biologics are:


• Infliximab (Remicade)
• Adalimumab (Humira).

Other biologics that may in time be licensed for IBD in the


UK include:
• Certolizumab pegol (already approved in the UK as a
treatment for arthritis)
• Golimumab
• Vedolizumab (This is a slightly different type of biologic. It
works by blocking white blood cells, rather than by binding
to TNF-alpha cells).

How are biologics used in IBD?


In general, biologics are prescribed for severe IBD when standard
treatments have not worked. However there is some evidence
that earlier use of biologics or combined therapies (biologics
plus immunosuppressants) may be helpful, especially in Crohn’s
Disease. Research is continuing in these areas, and on the
comparative effectiveness of the newer biologics.
28 Drugs used in IBD

Infliximab
Currently infliximab is most commonly used to treat severe
active Crohn’s that has not responded to steroids or
immunosuppressants. It may also be used to treat severe
UC as an alternative to ciclosporin.

Not everyone responds to infliximab, but a number of studies


have shown that it can be very effective at improving symptoms,
bringing about remission and reducing the need for surgery.

Infliximab is given by intravenous infusion (a drip), over several


hours, usually in hospital or a day clinic. If you respond well you
will usually be prescribed a course of infusions. Your treatment
should be reviewed at least every 12 months.

It is important to talk to your IBD specialist before you start


infliximab about its possible benefits and risks, including the
potential for side effects. You will also need to have a series of
checks for pre-existing conditions such as tuberculosis (TB) as
infliximab can reactivate this.

Other side effects can include:


• reactions to the infusion
• greater susceptibility to infections
• a worsening of a pre-existing heart condition
• skin rashes
• joint inflammation
• more rarely, liver or nervous system problems
• an increased risk of some cancers including lymphoma
(cancer of the lymph glands).
Drugs used in IBD 29

For more details on infliximab and how it works, see our drug
treatment information sheet, Infliximab.

Your health will be carefully monitored while you are on infliximab


and the clinic staff or your IBD team should be able to help with
any queries and concerns.

Adalimumab
Adalimumab is a more recent synthetic (man-made) anti-TNF
drug. It is mainly used for severe Crohn’s, although it is licensed
to treat UC in some circumstances.

Adalimumab, like infliximab, has been shown to be effective at


controlling flare-ups and at treating Crohn’s fistulas. It can also
be useful when infliximab has failed. Adalimumab is injected
subcutaneously (under the skin), so is easier to take at home.

A common side effect is pain at the injection site, sometimes


with redness, itching and swelling. Other side effects are similar
to those with infliximab and you will need similar checks and
monitoring. For more information see our drug treatment
information sheet, Adalimumab.

“I have had allergic


reactions and these
can be very scary but
the nurses are always
fantastic and know
exactly what to do.” Rita
30 Drugs used in IBD

Symptomatic Drugs
There are a number of drugs available, often ‘over the counter’
(without a prescription), which can be very effective at treating
symptoms such as diarrhoea, constipation and pain. These are
known as symptomatic drugs. However, they do not reduce the
inflammation causing these symptoms.

It is best to check with your doctor or IBD specialist


before taking any of these drugs or medicines, in
case they are not suitable for your type of IBD or may
interact with your IBD medication.

Antidiarrhoeals
Codeine phosphate, loperamide (Imodium, Arret), and
diphenoxylate (Lomotil) are all drugs which reduce diarrhoea by
slowing down the contractions (muscle activity) of the gut, so
food takes longer to pass through your system. This allows more
time for the water produced by the digestive processes to be
reabsorbed by the colon, and for the stools to become firmer
and less urgent.

This means that abdominal cramps and constipation can be a side


effect of these antidiarrhoeals. Sometimes they can cause hard
stools that are difficult or painful to pass. Codeine can also cause
nausea and drowsiness, and may encourage dependence if taken
in relatively large doses for a prolonged period. If codeine is
suddenly withdrawn it may cause a general feeling of being unwell
or of anxiety.

Loperamide is generally considered the safest antidiarrhoeal – but


should not be taken by anyone having a significant UC flare-up.
Drugs used in IBD 31

Bile salt binders


Bile salts are naturally released from the liver to help with digestion,
and are then reabsorbed in the ileum (the lower part of the small
intestine). If you have Crohn’s Disease and have had surgery to
remove the ileum, higher levels of bile salts can drain into the colon
and cause watery diarrhoea.

Bile salt binders such as cholestyramine (Questran), colestipol


(Colestid) and colesevalam combine with the bile salts and prevent
them from reaching the colon. This helps reduce the diarrhoea.
Cholestryramine and colestipol are in powder form and can be
mixed with water, juice or soft food. Colesevalam comes as a
tablet, which some people find more convenient.

Possible side effects include indigestion, abdominal bloating and


discomfort, nausea and constipation. Bile salt binders can also
affect how well other drugs are absorbed so should not be taken
within four hours of other medication.

Bulking agents
Bulking agents or ‘bulk formers’ contain a water absorbent plant
fibre – usually ispaghula or stercula. Popular brands include
Fybogel, Isogel, and Normacol. These come as granules which,
when taken with plenty of water, swell up inside the bowel and
thicken liquid or soften hard stools. The fibre also provides enough
bulk for the bowel to work normally.

Bulking agents can be particularly helpful in treating diarrhoea if


you have had surgery to remove your colon in which your small
intestine is joined to your rectum (colectomy with ileo-rectal
anastomosis). They can also be useful to soften the hard motions
you can get with UC of the lower colon or of the rectum.
However, you should not take bulking agents if you have a
stricture (narrowing) of the bowel, as sometimes happens with
Crohn’s Disease.
32 Drugs used in IBD

Laxatives
Constipation can also be a symptom of IBD, especially of proctitis
(inflammation in the rectum). Laxatives help to relieve constipation.
Osmotic laxatives, such as Movicol, which contain a compound
known as macrogol, are usually considered the best type of
laxative for people with IBD. These increase the amount of water
in the large bowel and make the stools softer and easier to pass.
However, laxatives can also cause wind and stomach cramps,
especially at the start of treatment.

Anti-spasmodics
Anti-spasmodics such as mebeverine (Colofac), hyoscine
butylbromide (Buscopan) and alverine citrate (Spasmonal) reduce
painful gut cramps or spasms by relaxing the intestinal muscles.
These medicines are most likely to be recommended for people
with Irritable Bowel Syndrome (IBS), but they may also be helpful
for the IBS-like symptoms sometimes experienced by people
with IBD.

Analgesics (painkillers)
If you need to take over the counter painkillers it is probably best
to avoid ibuprofen and diclofenac. These are what are known as
non-steroidal anti-inflammatory drugs (NSAIDs). While they can
be very effective for pain in the joints and spine, which may affect
some people with IBD, there is some evidence that they may make
other IBD symptoms worse or possibly trigger a flare up. Some
people may also be affected by aspirin, so for simple pain relief
paracetamol is probably the safest option for people with IBD.

If you find you have ongoing problems with pain and need to keep
taking painkillers, talk to your doctor about your symptoms as
other treatment may be more appropriate.
Drugs used in IBD 33

Antibiotics
Antibiotics kill or stop the growth of bacteria, and are
sometimes used for IBD.

They have a well-established role in helping to treat


complications of Crohn’s Disease such as abscesses and fistulas
(abnormal connections between the bowel and the skin or other
organs). Antibiotics have also been tried as a treatment for other
IBD symptoms, often in conjunction with other drugs. This use
is based on the theory that while the exact cause of IBD is still
unknown, it seems very likely that it involves an abnormal
reaction of the immune system to intestinal bacteria. Antibiotics
can reduce these bacteria, and it is also known that some
antibiotics may have an immunosuppressant effect.

Most of the evidence suggests that antibiotics are not that


effective as a treatment for Crohn’s flare-ups or as maintenance
treatment. However, a recent review concluded that the
two most commonly used antibiotics, metronidazole and
ciprofloxacin, may be helpful for treating active Crohn’s Colitis
(Crohn’s in the colon), and after surgery. It also confirmed the
effectiveness of antibiotics for abscesses and fistulas, and in
helping to treat pouchitis (inflammation of an ileo-anal pouch,
a complication that sometimes follows surgery for UC).
34 Drugs used in IBD

Metronidazole (Flagyl)
This is the most commonly prescribed antibiotic for Crohn’s
Disease. It is usually taken as a tablet, but it can be taken as
a suppository or be given by injection. Side-effects may
include nausea, lack of appetite and a metallic taste in the
mouth. More rarely, long term use can cause nerve damage
and a tingling in the hands and feet.

It is best to avoid drinking alcohol while taking metronidazole


and for at least two days following the last dose, as there can
be an interaction.

Ciprofloxacin
Ciprofloxacin is also used for the treatment of Crohn’s and has
been found to be as effective as metronidazole, with fewer
side effects. It too is normally taken as a tablet, but can be
given by injection. Common side effects include nausea and
diarrhoea, and it may interact with some of the other
medications used for IBD.
Drugs used in IBD 35

Other Common Questions


Can other medicines affect IBD drugs?
It is possible that other drugs or medicine
might interact with your IBD medication –
and that this interaction could make your
treatment less (or more) effective, or
perhaps alter its side effects.
So it is very important to tell your doctor and specialist IBD
team about any other medicines, treatments or therapies
you are taking. This includes not only medication for
other conditions but also any over-the-counter, herbal or
complementary medicines. It may also be a good idea to
carry a list of all your medicines, including dosages, to make
sure you don’t forget to mention something.
36 Drugs used in IBD

Can IBD drugs affect


fertility or pregnancy?
In general, the evidence suggests that active Crohn’s or UC may
do more harm to the growing baby than most IBD medicines.
So most women with IBD are advised to continue taking their
IBD medication during pregnancy. However, a small number
of the drugs used for IBD should not be taken when trying to
conceive a baby or by women once they are pregnant. Male
fertility can also be affected. So if you are planning to have a
baby, or especially if you are already pregnant, it is important to
check with your IBD team whether you need to change your
drug treatment.

More details are given in our information sheets Fertility and


IBD and Pregnancy and IBD, which also looks at IBD drugs and
breastfeeding.
Drugs used in IBD 37

Does it matter if I don’t take my drugs?


When you are first prescribed medication for your IBD you
will probably find it easy to remember to take it as exactly as
instructed, especially if it has an immediate effect on your
symptoms. Once you feel better, you may be less focused on
taking your tablets or applying your topical medicines, and start
to forget the odd dose. Or you may be tempted to stop taking
it altogether, now you don’t feel so ill, thinking you don’t need
it. A lot of people get fed up with having to take pills every day,
maybe even several times a day – or just feel they would rather
do without such a regular reminder of their IBD.

These are understandable feelings, but many studies


have shown that maintenance therapy (continuing to
take medication even when you are well) is important
and does reduce the chance of a flare-up. It can also
mean that you are less likely to need to move on to
taking additional or stronger drugs. There is also some
evidence that some IBD drugs may help reduce the
chances of developing another condition. For example,
5-ASA drugs may reduce the slightly increased risk of
bowel cancer for some people with IBD.

If you do miss taking a dose, don’t panic – the Patient


Information Leaflet that comes with your medication should
tell you what to do. If you can’t find this, check with your doctor
or nurse.

If you are prone to forgetting things like taking tablets, try and
make taking them part of your daily routine, like brushing your
teeth. Our leaflet, Staying well with IBD has some other
suggestions of ways to remind yourself.
38 Drugs used in IBD

Can I alter the dose myself?


It is usually important to take the full dose to get the full effect.
Some medicines must also be taken in particular ways – for
example, at particular times of day, on an empty stomach, or
with or after food. If your lifestyle makes it difficult to for you to
do this, try discussing it with your doctor. It may be that some
compromise or alteration in the dose is possible. For example,
if you are taking 5-ASAs you may be able to change to taking
the full dose just once a day, which some people find easier.

It is also worth talking to your doctor and/or your IBD nurse


about any other worries you have about the amount of
medicine you are taking, or concerns about side effects. It may
be that they can reassure you, or again, suggest changes that
you find helpful.

There may be other options such as different size doses as


mentioned. Or it may be that a change in brand or form of drug
would suit you better. With some drugs just taking them at a
different time of day can make a difference, for example, taking
steroids before 11am can help reduce side effects because this
follows the natural rhythm of steroids in the body.

You may be feeling that as someone who has lived with an


ongoing medical condition for some time, perhaps years, you
are now quite an expert on what works for you. And, as a result,
you may feel you would like to take a more active part in your
treatment and be able to adjust your own medication when
your symptoms begin to get worse or better. If so, discuss this
with your doctor or IBD specialists. You may find that they are
happy to include this idea in a plan around what to do in the
event of a flare-up.
Drugs used in IBD 39

How safe are IBD drugs?


Before drugs are licensed in the UK, they go through rigorous
research and clinical trials on thousands of people. This process
can take many years. Drugs are licensed by the Government’s
Medicines and Healthcare products Regulatory Agency
(MHRA). The MHRA is responsible for regulating all medicines
and medical devices in the UK, ensuring they work and are
acceptably safe. It gives permission and sets strict safety criteria
for all clinical trials in the UK. It demands very high standards
from medicines manufacturers, and will only issue a licence
when it is satisfied that a medicine meets all its safety and
quality requirements.

The MHRA also continues to review the safety of drugs after


licensing. As part of this process, it has introduced a Yellow Card
scheme to encourage people to report any suspected side-
effects from medicines. For more information on the regulation
and monitoring of medicines see Medicines & Medical Devices
Regulation: What you need to know available to download from
the MHRA website at www.mhra.gov.uk. To make a yellow card
report go to http://yellowcard.mhra.gov.uk. More contact
details for the MRHA are given at the end of this booklet.

Can I take part in clinical trials?


To take part in a clinical trial you may have to be referred by
your doctor – and it is always a good idea to discuss any trial
you are thinking of taking part in with your doctor or IBD
specialist, before you take your decision. It is important to be
sure that you fully understand all the potential benefits and risks
the trial may have for you. For further information on how to
find out about clinical trials including questions to ask, see the
NHS Choices website: www.nhs.uk/conditions/clinical-trials.
40 Drugs used in IBD

Who can I talk to about my treatment?


Many hospitals have a specialist IBD nurse for information
and support. It can be very helpful to build a good relationship
with your healthcare team, so that you can ask about your options
and discuss any concerns and worries. Talking openly about your
feelings and symptoms will help them understand your needs
more fully and make sure they are providing the right treatment.

You can also talk to your local pharmacist, who has professional
knowledge and should also be able to answer any questions
you have about any drugs and medicines.

At Crohn’s and Colitis UK we have a telephone information line


and a support line. All our information leaflets and booklets are
available on our website as well as from the office. All medicines
come with a ‘Patient Information Leaflet’. These are produced
by the manufacturer and approved by the MHRA. They include
instructions on how to take the medicine and information on
possible side-effects not all of which are mentioned in this
booklet. For more details and copies of Patient Information
Leaflets go to the Electronic Medicines Compendium at
https://www.medicines.org.uk.

For more detailed written information look at the ‘Patient


Information Leaflet’ that comes with every medicine. You can
find details of companies that make prescription drugs on the
Association of British Pharmaceutical Industry website: www.
abpi.org.uk. For companies that make over-the-counter drugs,
(drugs you can buy without a prescription) go to the Proprietary
Association of Great Britain (PAGB) website: www.pagb.co.uk.
See our list of Other useful organisations for more details.

NHS Choices has a wide range of useful information about


Crohn’s Disease and Ulcerative Colitis, including information
about drugs and medicines, at www.nhs.uk.
Drugs used in IBD 41

Help and support from


Crohn’s and Colitis UK
All our booklets and information sheets 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:


0845 130 2233
open Monday to Friday, 10am to 1pm, 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: 0845 130 3344


open Monday to Friday, 1pm to 3.30pm and 6.30pm to 9pm,
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.
42 Drugs used in IBD

Other useful organisations


Bladder and Bowel Foundation
www.bladderandbowelfoundation.org
0845 345 0165
Colostomy Association
www.colostomyassociation.org.uk
0800 328 4257
Core – Fighting Gut and Liver Disease
www.corecharity.org.uk
020 7486 0341
Crohn’s in Childhood Research Association
www.cicra.org
020 8949 6209
IA – The Ileostomy and Internal Pouch Support Group
www.iasupport.org
0800 0184 724
MHRA
www.mhra.gov.uk
Association of British Pharmaceutical Industry
www.abpi.org.uk
020 7242 8331
Proprietary Association of Great Britain (PAGB)
www.pagb.co.uk
0870 890 4333
Drugs used in IBD 43

How we write our information


Crohn’s and Colitis UK is an accredited member of the
Information Standard scheme for health and social care
information producers. This means that we have passed
a rigorous assessment to ensure that our information is
• clear
• accurate
• balanced
• evidence-based and
• up-to-date
For more information see our website at
www.crohnsandcolitis.org.uk and the Information
Standard website at www.theinformationstandard.org.

How to contact us with comments or


questions about this booklet
If you would like more information about the sources
of evidence on which this publication is based, or
details of any conflicts of interest, or if you have
any comments or suggestions for improvement,
please email the Publications Team at
[email protected] or write to
us at the address below.
The Publications Team
Crohn’s and Colitis UK
4 Beaumont House, Sutton Road
St Albans, Hertfordshire AL1 5HH
You can also comment using the Publications
Feedback page on our website, or by contacting us
through the Information Line on 0845 130 2233.
Drugs used in IBD
© Crohn’s and Colitis UK 2014
Drugs used in IBD Edition 5
Last Review March 2014
Next Planned Review 2016

Crohn’s and Colitis UK


4 Beaumont House, Sutton Road,
St Albans, Hertfordshire AL1 5HH
Administration: 01727 830038
Information Service: 0845 130 2233;
[email protected]
Publications: [email protected]
www.crohnsandcolitis.org.uk
Crohn’s and Colitis UK is the working name for the
National Association for Colitis and Crohn’s Disease (NACC)
Charity registered in England and Wales No. 1117148 and in Scotland No. SC038632
A company limited by guarantee in England: Company number 5973370

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