Giant cell arteritis

Also called GCA, Temporal arteritis

New headache over 50 with scalp tenderness or jaw pain. Untreated it blinds people, permanently, sometimes within a day.

What it is

Inflammation of medium and large arteries, particularly those supplying the head and the eyes. Almost never seen under 50, and increasingly common with age.

It is one of the few conditions where treatment starts before the diagnosis is confirmed, because the risk is sight. Inflammation can block the artery supplying the optic nerve, and once vision is lost it does not come back. Steroids started the same day prevent that; steroids started next week may not.

Around half of people with giant cell arteritis also have polymyalgia rheumatica, and around one in five with polymyalgia develop giant cell arteritis. Anybody with polymyalgia should know the warning symptoms of the other.

Treatment is high-dose steroids for months to years, tapering slowly. Managing the steroids, their bone effects and their diabetes risk becomes a large part of the condition.

Signs you might notice

New headache in somebody over 50, usually at the temple, often severe and unlike their usual headaches.

Scalp tenderness. Combing hair or resting on a pillow hurts.

Jaw ache or tiredness when chewing, easing when they stop. This symptom is close to specific.

Visual symptoms: blurring, double vision, a curtain across the vision, or brief loss of sight in one eye. Any of these is a same-day emergency.

Shoulder and hip girdle stiffness, worse in the morning.

Fever, weight loss, night sweats, and feeling generally unwell.

Any of these together in somebody over 50 needs to be seen the same day, and any visual symptom needs to be seen within hours.

How it can affect day-to-day life

The long steroid course is the part people live with. Weight gain, mood change, sleeplessness, thin skin, raised blood sugar and bone loss all follow, and they need actively managing rather than accepting.

Bone protection and stomach protection should be started with the steroids, not later. See osteoporosis.

Tapering too fast causes relapse and tapering too slowly prolongs the harm, so the schedule is worth following exactly and worth asking about at every review.

The person needs a steroid emergency card and needs to know never to stop steroids suddenly, and to increase them if they become acutely ill.

Vision loss in one eye, where it happens, is devastating and permanent, and the practical support afterwards is often left to the family to find. See visual impairment.

Supporting someone well

Learn the three questions: is the headache new, is the scalp tender, does the jaw ache on chewing. Over 50 and yes to any is a same-day GP call.

Any visual symptom: A and E or eye casualty within hours. Do not wait for a GP appointment.

Expect treatment to start before the biopsy or scan. That is correct and should not be argued with.

Ask for bone protection, stomach protection and blood glucose monitoring from the start.

Get a steroid emergency card, and make sure anybody supporting the person knows never to stop the steroids abruptly.

Anyone with polymyalgia rheumatica should be told these symptoms explicitly, and rarely is.

Where to get help

A GP practice the same day, or A and E for any visual symptom.

Rheumatology, urgently, and ophthalmology if vision is affected.

PMRGCAuk run a helpline and are the specialist charity for both conditions.

Arthritis UK for general information and self-management.