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Arthritis Research UK
Giant cell arteritis
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Arthritis Research UK
Giant cell arteritis
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What is GCA? People with GCA may have a number
of different symptoms. Most people
Giant cell arteritis, or GCA, is one of
will experience some, but not all, of these
a group of conditions referred to as
symptoms. The most common symptoms
vasculitis, meaning inflammation in the
of GCA are:
blood vessels. It’s called an arteritis
because it affects the arteries rather than • headache, with severe pain and
the veins. It commonly affects the arteries tenderness over the temples and the
of the skull, causing pain and tenderness scalp – it may be painful to brush your
over the temples. Because of this, GCA is hair or to shave
often known as temporal arteritis. • thickening or tenderness of the blood
vessels at your temples
• pain in the jaw or tongue when
Who is affected? chewing (claudication)
GCA is very rare in people younger than 50.
• fatigue
It’s more common in women than men,
and more common in people of northern • flu-like symptoms, night sweats or fever
European descent than in people of other • weight loss
races. In the UK, 22 people in every 100,000 • rarely, loss of vision which can occur
are affected. GCA is quite often associated suddenly (this may be only partial,
with a condition called polymyalgia but it can sometimes be total. It’s
rheumatica (PMR), which causes pain and usually temporary in the early
stiffness of the muscles, particularly in the stages, but without treatment loss
shoulders and hips. About 15% of PMR of vision can become permanent)
patients also develop GCA, while 40–50% • double vision.
of people with GCA also have symptoms
of PMR. You should see your doctor urgently
(contact the out-of-hours service if
See Arthritis Research UK booklet necessary) if you think you may have
Polymyalgia rheumatica (PMR). GCA, particularly if you have visual
disturbance or pain in the jaw or
tongue. These symptoms suggest that
you may be at greater risk of visual loss
What are the symptoms unless you receive prompt treatment.
of GCA? Less commonly, GCA can affect other large
blood vessels that could lead to pain when
Although some of the effects of
using the arm muscles or in the calves
GCA can be serious, these can usually
when walking. Occasionally, GCA can
be avoided by prompt treatment
cause strokes or mini-strokes (also known
with steroids.
as transient ischaemic attacks or TIAs).
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Arthritis Research UK
Giant cell arteritis Patients with GCA
often have symptoms
of PMR, including pain,
stiffness and tenderness
in the muscles of the
shoulders, arms, hips
and legs, especially
in the morning.
What causes GCA? What tests will I have?
We don’t yet know the exact cause of Blood tests
GCA. However, we do know that it’s These are used to check for signs of
caused by a problem with the immune inflammation in the blood vessels.
system. The immune system normally They’re useful in diagnosing GCA,
helps keep us healthy by fighting but will also be repeated over time to
infection. However, in GCA, these defence check that the inflammation is controlled.
mechanisms attack the healthy artery,
The key blood tests are the C-reactive
causing inflammation. We don’t yet know
protein (CRP) and the erythrocyte
why this happens. Although GCA isn’t
sedimentation rate (ESR). The levels
directly inherited, we know that genetic
measured by both these tests increase
factors play some part.
when there is inflammation in the
body. Your doctor may do one or other
How is GCA diagnosed? of these blood tests. In most cases,
ESR and CRP are high in people who
The diagnosis is based on your symptoms,
have GCA. However, a normal result
a clinical examination, blood tests, the
doesn’t necessarily rule out GCA, and
results of a temporal artery biopsy or
inflammation may have other causes
an ultrasound scan showing a typical
such as infection.
halo effect.
Other blood tests may be performed to
Should I see a specialist? look for other possible causes for your
It’s very important that your family doctor symptoms, including tests to check for
(GP) starts treatment straight away if inflammation in other blood vessels.
GCA is suspected. However, you should
also be referred promptly to a specialist Scans
to confirm the diagnosis. Depending on You may be asked to have a chest x-ray to
your symptoms, this specialist will usually rule out other conditions.
be either an ophthalmologist (an eye Your doctor may ask for an ultrasound
specialist) or a rheumatologist (a doctor of the arteries overlying the temple
who specialises in immune problems, and and in the armpit. This can be helpful in
problems with the joints and muscles). confirming a suspected GCA diagnosis, in
Tests need to be performed quickly, combination with a biopsy, but this type
so you’ll probably be given an urgent of scan isn’t yet available in all hospitals.
referral with an appointment arranged
at short notice. Temporal artery biopsy
Your doctor may suggest this test to
confirm the diagnosis of GCA even if you
have already started on steroid treatment.
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Arthritis Research UK
Giant cell arteritis
This should be done within 1–2 weeks that you don’t have GCA the steroid
of starting steroids. After this time, the treatment can be stopped.
steroids may be starting to take effect • There’s some evidence that the test
making the result less reliable. There are can help in assessing how severe the
three main reasons for having the test: condition is. In some cases, more
• It is important to confirm the diagnosis powerful treatment may be needed.
since this means a prolonged period
The biopsy will usually be carried out by
of steroid treatment which can have
a surgical doctor, but is a test and not a
side-effects. Rarely, an alternative
treatment. Using local anaesthetic, a small
diagnosis might be suggested by
sample of artery from the scalp over the
the biopsy.
temple is removed and examined under
• If your condition doesn’t improve with a microscope. Your doctor will explain
steroid treatments, it may be that you the procedure, including the risks and
don’t have GCA. If the test shows no benefits, and you will be asked to sign
signs of GCA and your doctor is satisfied a form consenting to the biopsy.
Figure 1
Profile of the
head showing
the temporal
artery
Photography used with kind permission of Elsevier. © Elsevier 2011. Taken from Practical Rheumatology, third edition.
Edited by Marc C Hochberg, Alan J Silman, Josef S Smolen, Michael E Weinblatt and Michael H Weisman.
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After the biopsy is carried out you’ll called anabolic steroids). Prednisolone is
have a wound about 3–4 cm (1–1½ in) the most commonly used steroid tablet.
in length, close to the hairline. The wound
Steroid treatment consists of an initial
will be covered with a dressing until your
high dose, followed by a gradually
follow-up appointment about a week
reducing dose as the inflammation is
later, but you will still be able to wash
brought under control.
your hair with care. When the anaesthetic
wears off you may need painkillers such Because there’s a serious risk of sight loss
as paracetamol for a time. if you’re not treated, it’s important to start
As with any surgical procedure, you steroid treatment straight away. If your
should look out for signs of infection – doctor has a strong suspicion that you
such as redness which starts to spread have GCA, they may prescribe steroids
or a continuous discharge. Very rarely, even before the diagnosis is confirmed
the procedure may lead to temporary or by a specialist.
permanent damage to the nerves, which To effectively treat GCA you’ll usually
may result in numbness or a drooping be given a high dose of between 40 mg
brow. In patients who have narrowing and 60 mg of prednisolone tablets
of the arteries in the neck (carotid artery every day to begin with. This dose of
disease) there may be a very small risk of steroids is usually continued for 3–4
a stroke. If you have any concerns about weeks. If you’re well after that, and your
the risks you should discuss them with blood tests have improved, then your
your doctor beforehand. doctor will advise you to start reducing
the dose. The specialist will want to see
you regularly to monitor your progress.
What treatments
If you do develop visual symptoms, you
are there for GCA? may need to go to hospital urgently to
Steroid tablets be given steroids (methylprednisolone)
Although there’s no cure as yet for through a drip into a vein.
GCA, treatment with steroid tablets is Corticosteroid tablets come in
very effective, and they usually start to different strengths and different
work within a few days. Steroid tablets colours. Therefore, it’s very
are sometimes called corticosteroids important that you know exactly
and they work by reducing the activity what dose you’re supposed to be
of the immune system to reduce the taking, and how many tablets of
inflammation in the blood vessels. These each strength you need to take
are not the steroids sometimes used by every day.
athletes and body builders (which are
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Arthritis Research UK
Giant cell arteritis
Although there’s
no cure as yet for
GCA, treatment with
steroid tablets is very
effective, and they
usually start to work
within a few days.
Reducing the dose and coming off steroid If the inflammation in the blood vessels
tablets is a gradual process. If this is done returns this is called a relapse, and your
too quickly, the inflammation can come steroid dose may have to be increased
back. Usually it takes 1–3 years to come again to deal with this. Relapse is most
off steroids altogether; however, for most common within the first 18 months of
of this time you’ll be on a low dose. It isn’t treatment. Your regular check-ups will
always possible to stop taking steroids include blood tests for CRP or ESR,
completely and some people will need to and these will show if there are signs of
be on a low dose for a long time. the inflammation returning.
Your body makes small amounts of It’s extremely important that you
steroids (cortisol) as part of its normal let your doctor know if you get any
function, to help maintain blood pressure disturbances in your vision or jaw
and control the balance of salt and water pain while eating, even if it’s between
in your body. But when you’re on steroid clinic appointments.
treatment your body stops producing its
own supply. This can take a little while
What are the side-effects
to start up again. It can therefore be
of steroid treatment?
dangerous to suddenly stop taking
Unfortunately, there are some possible
your steroid tablets, or to alter the
side-effects from steroid treatment.
dose unless advised by your doctor.
Although the side-effects can be
worrying, steroids are necessary to treat
GCA. Your doctor will try to keep you on
the lowest dose of steroids that keeps the
disease under control; however, the early
high dose may cause side-effects such as:
• facial flushing
Steroids can cause • lack of sleep
high blood pressure • indigestion or stomach pain
(hypertension), • dizziness or faintness
or a rise in your • difficulty concentrating
blood sugar • mood changes including depression or
level. You should elation, irritability or aggressiveness.
If you are on steroids for a long time,
therefore have these other side-effects may include:
tested regularly. • weight gain
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Arthritis Research UK
Giant cell arteritis
Related conditions
Polymyalgia rheumatica (PMR) Large vessel vasculitis (LVV)
GCA is sometimes associated with a We now know that GCA can sometimes be
condition called polymyalgia rheumatica linked with inflammation of other blood
(PMR), which can cause pain and stiffness vessels (vasculitis), including the main artery
especially in the muscles of the shoulders from the heart (aorta) and those supplying
and thighs which is usually worse in the head, neck and arms. This is called large
the morning. vessel vasculitis (LVV) and is usually linked
The stiffness may be so severe that with symptoms such as weight loss, anaemia,
dressing, reaching, climbing stairs or even night sweats, limb pains and persistent
getting out of bed may be difficult. You inflammation.
may also feel unwell, have a slight fever It’s not certain how common the condition
or lose weight. At times, tiredness can be is, but your doctor may want to do further
overwhelming. tests if you are having frequent flares in spite
About 40–60% of people with GCA may of steroid treatment. It can be diagnosed
also have symptoms of PMR. People who with the help of specialist imaging such as
have previously been treated for PMR vascular ultrasound or a positron emission
may also develop GCA, possibly some tomography (PET) scan. It is usually treated
years later. with additional immunosuppressive drugs
such as methotrexate and leflunomide, and
newer biological drugs such as tocilizumab
are also being tried.
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Arthritis Research UK
Giant cell arteritis
At times, clinical trials of possible new The richest sources of calcium are dairy
treatments are carried out, and you may products (milk, cheese, yogurt), calcium-
be offered one of these new drugs as part enriched soya milk, and fish that are eaten
of a scientific study. Before agreeing to with the bones (e.g. sardines). Leafy green
take part in one of these trials, you vegetables, beans, chick peas and some
should make sure you fully understand nuts and dried fruits also contain calcium.
what it involves. We recommend a daily intake of calcium
of 1,000 milligrams (mg) or 1,500 mg if
Will I need any other treatments? you are over 60.
Your doctor may suggest low-strength
Figure 2 Approximate calcium content
aspirin (75 mg) as it helps to protect of some common foods
against loss of vision in GCA.
Food Calcium
As steroids have possible side-effects,
115 g (4 oz) whitebait 980 mg
your doctor may also suggest additional (fried in flour)
medications to protect you from these.
You will be started on calcium and 60 g (2 oz) sardines 260 mg
(including bones)
vitamin D supplements to protect your
bones. Your doctor may also advise 0.2 litre (1⁄3 pint) semi- 230 mg
skimmed milk
you to start another medication called
a bisphosphonate to reduce the risk 0.2 litre (1⁄3 pint) whole milk 220 mg
of developing osteoporosis. Because 3 large slices brown or 215 mg
steroids can affect the stomach lining, white bread
you may also be given a stomach- 125 g (4 1⁄2 oz) low-fat yogurt 205 mg
protecting tablet (for example, a
30 g (1 oz) hard cheese 190 mg
proton pump inhibitor, or PPI) such as
omeprazole. Bisphosphonates and PPIs 0.2 litre ( ⁄ pint) calcium-
13 180 mg
enriched soya milk
will usually be started at the same time
as the steroids. 125 g (4 1⁄2 oz) calcium-enriched 150 mg
soya yogurt
115 g (4 oz) cottage cheese 145 mg
Self-help and daily living 3 large slices wholemeal bread 125 mg
Diet 115 g (4 oz) baked beans 60 mg
There are no particular foods that you 115 g (4 oz) boiled cabbage 40 mg
should avoid, but you should make sure
Note: measures shown in ounces or pints are
you eat a healthy diet, containing plenty approximate conversions only.
of calcium and vitamin D (see Figure 2).
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Planning activities
and setting realistic,
achievable goals
can improve your and vegetable-based margarines. For
energy levels many people, the most convenient way of
obtaining an adequate vitamin D intake is
and well-being. with supplements.
Pacing and planning activities and If GCA has caused partial or total loss of
setting realistic, achievable goals can sight, this impairment should be registered
improve your energy levels and well- to make sure you are offered the benefits
being. If fatigue becomes a significant and support you are entitled to.
problem for you, an assessment with Support and advice is available from
a specialist nurse or occupational a number of different organisations.
therapist might help. There are also local self-help and patient
support groups around the country.
See Arthritis Research UK booklet The contact details for these groups
Fatigue and arthritis. can be found at the end of this booklet.
There are no
particular foods
that you should
avoid, but you
should make sure
you eat a healthy
diet, containing
plenty of calcium
and vitamin D.
Patient story diagnosis. Everything moved so quickly in
those few days. It felt like a rollercoaster.
Lucy was diagnosed with GCA When I left hospital I was taking 70 mg
3 years ago of prednisolone tablets every day,
It started when I was 70. For a few weeks but the doctor gradually reduced the
I felt extremely tired, had no appetite, dose over the next 2 years. I had one
and my shoulders and hips ached. I had relapse when the symptoms came back,
a terrible headache and my face was but they got better after the steroid dose
tender, especially at the temples. I noticed was temporarily increased. I came off
a flickering light in my right eye and pain steroids completely last year.
in my upper jaw when I ate. Then I woke
up one morning and found that half my I feel quite well now. I keep active and
bedroom looked black. I closed my eyes, have lots of different interests. My ESR
and when I opened them, everything is now 11 and my symptoms have gone,
looked normal again. except a slight flickering in the right eye.
I still feel tired sometimes and my legs
I was very scared and went to see my GP ache at times, but I know that I could have
immediately. He arranged a blood test lost my eyesight, and I’m so grateful that
and he told me my ESR was very high at this didn’t happen.
112. They took me straight in to hospital
and gave me steroids into a vein for
3 days. My symptoms settled down in
a few days and I had much more energy.
While I was in hospital I had a biopsy, and
the specialist told me this confirmed the
Arthritis Research UK
Giant cell arteritis
17
Positron emission tomography – an Where can I find out more?
imaging technique in which a radioactive
If you’ve found this information useful you
substance is introduced into the body, for
might be interested in these other titles
example into a vein. The substance can be
from our range:
tracked as it moves round the body using
special scanners which pick up positively Conditions
charged particles (positrons) from the • Osteoporosis
substance. The images can be matched • Polymyalgia rheumatica (PMR)
with images taken by other methods to
give a clearer picture of how the body’s Self-help and daily living
organs are working. • Diet and arthritis
Ultrasound scan – a type of scan that • Fatigue and arthritis
uses high-frequency sound waves to • Keep moving
examine and build up pictures of the
Therapy
inside of the body.
• Physiotherapy and arthritis
Drug leaflets
• Azathioprine
• Leflunomide
• Methotrexate
• Steroid tablets
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and leaflets from our website or order
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Giant cell arteritis
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Published June 2014 2061/GCA/14-1