Temporal arteritis: symptoms, causes, tests and treatment

The symptoms depend on which arteries are affected. The NHS lists frequent, severe headaches, pain or tenderness at the temples or on the scalp, jaw pain while eating or talking, and vision problems such as double vision or loss of vision in one or both eyes. More general symptoms are also common, including flu-like symptoms, unintentional weight loss, depression and tiredness.

NICE Clinical Knowledge Summaries suggest suspecting giant cell arteritis in anyone aged 50 or older with a new-onset headache that is usually, but not always, temporal, temporal artery abnormalities such as tenderness or thickening, acute visual disturbance, scalp tenderness, intermittent jaw or tongue claudication (pain on chewing that eases with rest), or systemic features such as fever, sweats, fatigue and weight loss.

Patient.info's professional reference says scalp tenderness usually comes a few weeks before the headaches, and that headaches and scalp tenderness tend to occur before visual loss, which occurs in about 30% of patients and is permanent in about 10 to 15%.

• New headache in someone over 50, often at the temples

• Tender scalp or tender, thickened temples

• Jaw or tongue pain when chewing or talking

• Double vision, blurred vision or partial loss of sight

• Fever, tiredness, weight loss, sweats or low mood

• Shoulder, neck or hip stiffness from polymyalgia rheumatica

In temporal arteritis, the walls of some arteries become inflamed. The arteries at the sides of the head, the temples, are the classic site, which is where the name comes from. The same disease is called giant cell arteritis.

NICE Clinical Knowledge Summaries describe it as a chronic vasculitis, meaning inflammation of blood vessel walls, affecting medium and large arteries. It usually affects people over 50. Cranial giant cell arteritis, also known as temporal arteritis, occurs when the extracranial branches of the carotid artery are involved, and extra-cranial or large vessel disease typically causes inflammation of the thoracic aorta and its proximal branches.

Patient.info's professional reference says cases under 50 have been reported but are exceptionally rare, and that the condition is more likely in northern European countries and in people of northern European ancestry, and quite rare in people of African and Asian descent.

The NHS advises asking for an urgent GP appointment or getting help from NHS 111 if you think you might have temporal arteritis. Do not wait for a routine slot, because the NHS says it can lead to serious problems like stroke and blindness if not treated quickly.

If you have problems with your vision, the NHS says you should have a same-day appointment with an eye specialist at a hospital eye department, and NICE CKS recommends an urgent same-day ophthalmology assessment for suspected giant cell arteritis with new vision loss or double vision. Go to A&E or call 999 if that cannot be arranged quickly, and call 999 for signs of stroke such as facial drooping, arm weakness or slurred speech.

Patient.info's professional reference says the actual cause of temporal arteritis is unknown. It says the mean age at onset is is approximately 70, and giant cell arteritis is 2.5 times more likely to occur in women than men.

Patient.info reports that 40 to 60% of people with temporal arteritis also have polymyalgia rheumatica (PMR), and 16 to 21% of people with PMR have temporal arteritis, perhaps because of shared genetic risk factors. The NHS says PMR causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips.

The NHS says a GP will ask about your symptoms and examine your temples. After some blood tests you will be referred to a specialist, who may carry out further tests. NICE CKS says inflammatory marker bloods, including full blood count, ESR and CRP, should be arranged before or immediately after starting steroid treatment, and that referral should not be delayed while awaiting results. It recommends urgent discussion with a specialist (usually a rheumatologist) and referral using a local fast-track pathway.

Patient.info says less than 5% of people with the condition have normal inflammatory markers, so normal results make it less likely but do not definitively rule it out. The NHS lists an ultrasound scan of the temples, and a biopsy under local anaesthetic, where a small piece of the temporal artery is removed and checked. Patient.info says a biopsy should be performed within 4 weeks of starting steroids, ideally earlier, because steroid therapy can lead to resolution of the inflammation, and that FDG-PET/CT can detect large vessel involvement.

The NHS says temporal arteritis is treated with steroid medicine, usually prednisolone, and that treatment is started before it is confirmed because of the risk of vision loss. There are 2 stages: an initial high dose for a few weeks to bring symptoms under control, then a lower dose, after symptoms have improved, given over a longer period of time, possibly several years. A small number of people may need steroids for the rest of their life.

NICE CKS suggests considering an alternative diagnosis if symptoms do not respond rapidly to high-dose steroids, and a specialist tapering schedule once the person is in remission. The NHS warns not to suddenly stop taking steroids unless your doctor tells you to, as this could make you very ill.

The NHS lists other medicines you may need: low-dose aspirin to reduce the risk of a stroke or heart attack, proton pump inhibitors to lower the risk of stomach problems, bisphosphonate therapy to reduce the risk of osteoporosis, and immunosuppressants to allow the steroid dose to be reduced. Patient.info describes tocilizumab as an effective steroid-sparing therapy, originally approved by NICE in 2018 for relapsing or refractory giant cell arteritis only.

NICE CKS says relapses are common while steroids are being reduced, and that complications are largely preventable by treatment with adequate doses of steroids. Patient.info says relapse occurs in up to 50% despite appropriate treatment, and that treatment is usually needed for 1 to 2 years, with continued low-dose prednisolone needed for several years in some cases. The NHS says you will have regular follow-ups to check how you are doing and for any side effects.

NICE lists possible complications as vision loss, large artery complications such as aortic aneurysm, aortic dissection and large artery stenosis, and cardiovascular disease such as stroke. Patient.info says overall survival is similar to that of the general population, but the risk of developing large vessel complications such as aortic aneurysm is increased.

Because suspected temporal arteritis is an emergency pathway, assessment and the first doses of steroid usually come through the GP, NHS 111 or an emergency department rather than a booked private appointment. Waiting for an outpatient slot would defeat the purpose.

Once the situation is stable, long-term care is often shared between a hospital rheumatology team and the GP. Some people choose a private rheumatologist or eye specialist for follow-up or a second opinion. The medicines and monitoring are the same either way. Ask who will manage the steroid reduction and bone protection.