Patient information from BMJ

Giant cell arteritis

Last published:Apr 20, 2022

Giant cell arteritis causes inflammation (swelling) in the lining of some blood vessels, usually those in the temples (the sides of the head).

If you have symptoms it’s important to see your doctor straight away. Delaying treatment can cause serious problems, including blindness.

There are good treatments for giant cell arteritis. But treatment can take time, and symptoms can return from time to time in some people. You can use our information to talk to your doctor about the best treatments for you.

What is giant cell arteritis?

Giant cell arteritis (or GCA for short) is thought to happen when the body’s immune system, which usually protects us from infection, attacks some of our arteries.

Arteries are blood vessels that carry oxygen and nutrients from the heart to where they are needed in the body.

When the immune system acts in this way, it causes swelling in the lining of these arteries, which interferes with blood flow. The arteries most often affected are those in the temples, so that the symptoms of GCA mainly affect the head.

Giant cell arteritis needs urgent treatment.

If you think that you have symptoms of GCA, get medical advice straight away. Without treatment, GCA can cause serious problems, including blindness and having a stroke.

GCA tends to happen in middle-aged and older people. It rarely affects anyone under 50 years old, and mainly affects people over 70. About 1 or 2 in every 10,000 people aged over 50 have GCA.

Other things that make you more likely to have GCA include:

• having white, northern European ancestry. GCA is rare in people with African ancestry

• being a woman. Women are between two and four times more likely than men to get GCA, especially if they have other blood circulation problems, and

• smoking.

What are the symptoms?

The symptoms of GCA can include:

• suddenly having frequent headaches

• pain and cramping in the jaw and tongue

• scalp tenderness

• vision problems

• fever

• fatigue

• night sweats, and

• weight loss.

Remember: if you suddenly develop frequent severe headaches or problems with your vision, get medical advice straight away. These things can be signs of several medical conditions that need urgent treatment.

If your doctor thinks that you might have GCA, they will examine you and ask you about your symptoms. For example, they will probably ask things like:

• when the symptoms started

• where exactly the pain is, and

• whether you have any other medical conditions.

Your doctor might also suggest some tests that can help to show if you have GCA. These might include:

• blood tests

• a scan, and

• a biopsy, where a small piece of an artery is taken for testing. This is done under local anaesthetic, so you shouldn’t feel anything.

What treatments are available?

The usual treatment for GCA is medicines called corticosteroids. These are powerful anti-inflammatory drugs that can help to reduce inflammation (swelling) in the arteries of people who have GCA.

GCA needs urgent treatment. So if your doctor strongly suspects that you have it, they will recommend that you start treatment with corticosteroids straight away, without waiting for test results.

Most people with GCA take corticosteroids as tablets. But some people with severe symptoms, such as problems with vision, need to start treatment with the drugs given straight into a vein.

The usual treatment method when giving corticosteroids for GCA is:

• a high dose to begin with, usually as a tablet

• then a lower dose over the next 12 to 24 months. This dose is then gradually reduced (tapered) down to nothing.

Side effects of corticosteroids

Corticosteroids can cause side effects if taken over a long period, some of which can be serious. So your doctor should check on you from time to time while you are taking them. This is helps them to:

• check for any side effects, and

• see how much you are improving. They can then gradually reduce your medicine to the dose that does the most good and the least harm. Finally your doctor will reduce your dose down to nothing.

Side effects of corticosteroids can include:

• mood changes and other mental-health symptoms. Unlike some side effects, this can happen in the short term. So it’s good to be aware that this can happen

• developing type 2 diabetes

• increased appetite, which can lead to weight gain

• feeling tired

• being more likely to get infections

• indigestion or bleeding from the stomach. If you need to take corticosteroids for more than a short time, your doctor should prescribe a medicine to help protect your stomach

• raised blood pressure, and

• weakened bones. If you need to take corticosteroids for more than a short time your doctor should prescribe a vitamin D supplement to help keep your bones strong. It’s important to get enough calcium, too. Your doctor might recommend an extra medicine, called a bisphosphonate, to protect your bones.

If you can’t take corticosteroids for any reason, or if they don’t help your symptoms enough, your doctor might suggest medicines that help to stop the immune system attacking your arteries.

These types of medicine are often used to treat other conditions that involve inflammation, such as rheumatoid arthritis.

They can work well, but they can also affect how well your immune system works against infection. So your doctor should discuss these effects with you, as well as how to help protect yourself against infections.

What to expect in the future

The outlook for most people who have treatment for GCA is good. Most people find that their symptoms clear up with corticosteroids, and treatment usually prevents any vision loss.

But you will probably need to keep up your treatment for between one and two years. Many people also find that their symptoms come back after some time, and they need to have more treatment.

GCA can cause complications. For example, people with GCA are more likely to have other problems with their blood vessels, and possibly with their heart.

The treatment itself can also cause problems. For example, corticosteroids can cause problems including type 2 diabetes, and weaker bones, which can lead to fractures.

Regular follow-up appointments with your doctor can help prevent some of these problems.