What is giant cell arteritis (GCA)?

GCA is a disease known as ‘giant cell’ because of the presence of very large inflammatory cells in the wall of the arteries, causing them to swell and sometimes become occluded.

About giant cell arteritis (GCA)

About giant cell arteritis (GCA)

GCA is a disease known as ‘giant cell’ because of the presence of very large inflammatory cells in the wall of the arteries, causing them to swell and sometimes become occluded.

The condition affects large arteries of the head, neck, upper limbs and the main artery of the body – the aorta.  In old times, the condition was sometimes called ‘temporal arteritis’ because the temporal arteries were seen to be visibly swollen and the involvement of the deeper blood vessels was not recognised.

GCA typically afflicts people over the age of 50.  Although it’s rare, it sometimes occurs in people in their 40s. The peak age for developing GCA is between 60 and 80 years.  It typically affects women more than men and those of northern European descent.  It is most common in Scandinavians.  GCA is an auto-immune disease (disease of the immune system).  People who get it have done nothing to get it, and scientists still do not know how it starts.

The main early symptoms of GCA are headache, feeling generally unwell, weight loss, drenching night sweats and loss of appetite.  Over time, the blood vessels on the side of the head can be visibly swollen with tenderness on touch.  Things like brushing your hair may become painful.  In more advanced cases, people may find difficulty in chewing.  Typically, it is chewy foods like a piece of chicken or a hard piece of toast that cause problems.  The chewing becomes progressively painful rather than being painful from the first bite.  If ignored, the condition can affect either part or whole of an individual’s eyesight.  Very rarely, individuals may not notice any early symptoms and develop sudden painless loss of vision.

People with GCA need urgent treatment with steroids, which will usually prevent serious complications such as eye problems and blindness.

Have you just been diagnosed with GCA?
If you need to talk it over, please call our Helpline on 0300 111 5090
(open weekdays from 9am to 5pm) and/or contact us for an information pack 

For more details on how we can support you visit our Get Support page

What are the symptoms?

  • Headaches – the exact form this can take can vary, but the pain of GCA is a new headache, of a kind that the person hasn’t had before
  • Pain in the head
  • Tenderness of the scalp, for example when you comb your hair
  • Blood vessels at the temples may look or feel prominent.
  • Sudden loss of vision
  • Double vision.

If you have these symptoms, you should contact your doctor urgently.

You may also experience:

  • Tiredness
  • Low mood
  • Night sweats
  • Fever
  • Loss of appetite
  • Weight loss.

Up to 50% of people with GCA have symptoms similar to PMR at some time.

What tests are needed?

What tests are needed?

Blood tests have to be done to look for the level of inflammation in the body. Abnormal tests do not confirm the diagnosis, but normal tests do make it less likely to make a diagnosis of GCA.

Your doctor will refer you to the hospital on suspicion of diagnosis.  The best way to diagnose the condition is with either an ultrasound scan, a biopsy of the temporal artery or a specialised scan called a PET scan.  PET stands for Positron Emission Tomography.  It is not routinely done because it carries a large dose of radiation, but if the other tests are either negative or not possible, your doctor will do this to make a confirmed diagnosis.  If you are told you need a biopsy, please download our information leaflet.

What is the treatment?

What is the treatment?

Suspected GCA is usually treated immediately with a high dose of prednisolone (steroid) to reduce the risk of complications and relieve headaches and other symptoms. Starting the treatment immediately is very important, but your doctor will ensure that blood tests are done prior to starting the treatments.  The test result does not need to be available prior to the treatment, but it is important that the test is unaffected by the steroid treatment.  The usual starting dose is 40mg to 60mg per day, unless you are very petite or very large in which case the dose of prednisolone may be slightly lower or slightly higher.

Your specialist will make a plan for you to gradually come off steroids completely.  This may take 2 years. Unfortunately, some people will relapse and need longer duration of steroids.  For people experiencing relapsing disease, your doctor will need to give you medication in addition to steroids.  After all, if the same thing is done again, it is unlikely to produce different results.  Common additions to this treatment are drugs to modulate the immune system called methotrexate or tocilizumab.

Are there any complications?

Complications are less likely if treatment is started immediately after onset of symptoms.

Untreated GCA could lead to the following possible complications:

  • Blindness in one or both eyes (this is in untreated patients; it is rare after the 1st week of starting steroids, which is why immediate treatment is so important).
  • Stroke (rare)
  • An ulcer of your scalp or tongue (very rare)

The long-term complications of GCA are probably related to being on steroids.  Raised blood pressure, diabetes, brittle bones and other problems of being on steroids will be monitored by your doctor, specialist or nurse.