Giant cell arteritis

GCA is also known as temporal arteritis. This is because it often affects the temporal artery. The temporal artery is at the side of your forehead (temple).

In GCA, the inner artery walls become swollen or thickened (arteritis). This is due to inflammation that may include inflammatory cells called giant cells. This swelling restricts the blood flowing through the arteries The restriction means blood may not be able to reach the structures it supplies. If there is reduced blood flow to the eye it can cause sight loss in that eye. For this reason, GCA is considered an emergency.

This page contains a summary of our information on giant cell arteritis. To read our full information, download our factsheet:

The cause of GCA is unknown. It is believed to be an autoimmune condition., It rarely affects people under the age of 50 years old. It usually affects people from 60 years of age, but it is most common in those over 70 years old. Females are more affected by GCA than males.

Headache

One of the first signs of GCA is a new onset of frequent or constant headache. This can be severe in some cases, and may come on suddenly or gradually. It is often at the side of your forehead, at your temples, and it may affect one or both sides of your head.

Scalp and temple tenderness

You may also feel that your temples and scalp are tender to touch. This might mean that combing or brushing your hair feels uncomfortable. The temporal artery is located close to the skin just in front of your ears and continues up to your scalp. Sometimes the temporal artery becomes thickened and more prominent.

Pain on chewing

Another early sign of GCA is jaw pain on chewing. This can be a cramp-like pain in your jaw which can make you stop eating. When you stop chewing the pain gets better. You may hear this referred to as jaw claudication and it is due to ischaemia in the muscles that help you to chew. Ischaemia can also cause pain in your tongue, mouth or ear.

If you have any of the symptoms outlined above, you should contact your GP urgently.

Visual symptoms

Around 30 in 100 people with GCA will experience visual disturbance. Most patients with GCA have a headache first. Some people have visual disturbance as the first symptom of GCA.

Temporary vision disturbances

You may experience a temporary complete loss of vision in one eye which returns after a while. This is known as amaurosis fugax.

Double vision

The muscles controlling your eye movements can also be affected. This can cause double vision. This may be temporary, lasting seconds or minutes, or it can be persistent.

Permanent loss of vision

GCA can result in severe permanent loss of vision in one eye. Without immediate treatment, it can also lead to sight loss in the other eye. This often happens within a week of the first eye developing symptoms.

Sight loss in GCA is most commonly caused by damage to the optic nerve. This is known as arteritic anterior ischaemic optic neuropathy. It may also be due to loss of blood supply to the retina. This is known as retinal artery occlusion. Rarely, people with GCA can have a stroke resulting in sight loss.

Prompt treatment can stop the other eye from becoming involved.

Sudden loss of vision is an emergency. It should always be investigated immediately by an ophthalmologist (hospital eye doctor).

It should be assessed even if your sight returns after a while. It should also be assessed even if you are not experiencing any of the other symptoms of GCA. Some people lose their sight without having previously noticed any other symptom of GCA. If you experience sudden sight loss, you should be seen urgently by an ophthalmologist.

You can seek an urgent review by:

• attending a walk-in eye casualty or eye emergency department
• contacting your GP
• calling 111
• attending A&E
• In some areas optometrists (opticians) offer emergency eye appointments.

You need to be seen urgently so that if treatment is required it can be given as soon as possible.

Other general health issues

The symptoms of GCA can resemble the symptoms of other conditions. This means GCA can be difficult to diagnose. Some people with GCA also experience more general symptoms. These can include weight loss, tiredness, flu-like symptoms, night sweats, fever, and depression.

Usually, people have some symptoms of GCA before they notice a problem with their sight. It’s very important to see your GP straight away if you have any concerning symptoms.

If it is suspected that you have GCA, you will be given treatment straight away, even before all the results of the diagnostic tests are obtained. This is to reduce any possible inflammation as quickly as possible, and to prevent blood flow in other arteries becoming restricted.

There are several things that your ophthalmologist or GP will check:

• Eye examination. Your vision will be measured on an eye chart and the ophthalmologist will check your eyes for signs of GCA. You may have a scan of your optic nerve and retina called an optical coherence tomography scan (OCT).
• The doctor will assess the artery in your temple (the superficial temporal artery). They will check for the pulse and thickening of the artery.
• Blood tests which check for signs of inflammation in your blood. These blood tests are non-specific tests, meaning they don’t pinpoint exactly where inflammation is in your body. Also, in some people, the results are inconclusive. Therefore, other tests such as a temporal artery biopsy or an ultrasound scan are used to confirm the diagnosis.

Steroids

If it is suspected that you have GCA, emergency treatment with high dose steroids will be started immediately.

Steroids are medication that reduce inflammation in the body. If GCA is suspected, you will be given steroid tablets (prednisolone) or a steroid drip (methylprednisolone). The steroid drip is usually given for three days. You'll be given this treatment even if your test results are not yet available.

The high doses of steroids are given to try to bring down the swelling in your arteries. This helps to prevent sight loss. If you already have sight loss, it aims to prevent further sight loss in your other eye. It also helps prevent rare complications, such as stroke.

You will probably have to take steroid tablets for between 18 months and two years or even longer, with the dose being reduced gradually (tapered) over time, as the inflammation subsides. A small number of people may need to take steroids for the rest of their life.

Other treatments for GCA

Tocilizumab

Tocilizumab is a biological therapy. This means that it is a drug which alters a biological process occurring in your body. Tocilizumab blocks a protein called interleukin 6. High levels of interleukin 6 can be found in people with GCA. The aim of tocilizumab treatment is to control GCA inflammation and reduce the amount of steroid treatment required. It may be used in people who have a relapse of GCA as they reduce their steroid treatment. Tocilizumab is started alongside steroid treatment. The NHS restricts the use of tocilizumab. Because of this, eligibility for this treatment can vary across the UK.

It is given as a weekly injection under the skin (subcutaneous), in the abdomen, thigh or upper arm. The drug is injected under the skin using a pre-filled syringe or a pen device and you may need to have these injections for up to a year, but your specialist will advise you about this. This treatment is normally self-injected at home.

Methotrexate

Methotrexate is a medication that suppresses the immune system and reduces inflammation. Methotrexate is more commonly used to treat arthritis. It has been found to reduce relapses of GCA and reduce the amount of steroid required to control GCA.

Methotrexate may be prescribed for people who have a relapse of GCA or who have side effects from steroids. Methotrexate is given once a week as tablets or as an injection under the skin with a pen device. Methotrexate is not licensed for GCA. This means that it has not been officially approved for GCA. However, national guidelines recommend it as a treatment for GCA based on the results from clinical trials.

About half the people with GCA have another condition called polymyalgia rheumatica (PMR). PMR causes inflammation in the blood vessels that supply the larger muscles in your body. It mainly affects muscles in the shoulders, neck, hips and back. These muscles can be painful and stiff, especially in the morning. It is possible to have GCA without having PMR. The link between GCA and PMR is not fully understood. However, both conditions are treated with steroids.

If you have been diagnosed with GCA it’s normal to find yourself worrying about the future. If you have sight loss you might be worried about how you will manage if your vision changes. It can be helpful to talk about these feelings with someone outside of your circle of friends or family. At RNIB, we can help with our telephone Helpline and our Counselling and Wellbeing team. Your GP or social worker may also find a counsellor for you if you feel this might help.

Your eye clinic may also have an Eye Care Liaison Officer (ECLO). They can provide you with practical and emotional support about your eye condition

Help to see things better

For some people both eyes are affected by GCA. For others, the affected eye was your good eye, and you have another sight issue in your other eye. There are lots of things that you can do to make the most of your remaining vision. This may mean making things bigger, using brighter lighting or using colour to make things easier to see. A low vision assessment gives people a chance to discuss any practical problems they are having with their vision with a low vision specialist. The specialist can explore things like magnifiers, lighting, colour contrast and other adaptations that may help.

Assistive technology can also be very useful to help you with your work, hobbies and activities.

You can ask for a referral to a low vision clinic from your ophthalmologist, optometrist, or GP.

You can also find out tips for making the most of your sight by downloading our booklet: