Patient guide
Giant cell arteritis: the headache over 50 that can take your sight
This is an emergency. If you are over 50 and have a new headache together with any of these, be seen today: jaw pain or tiredness when chewing, a tender scalp or temple, a brief blackout or dimming of vision in one eye, double vision, or sudden loss of vision. Vision that goes and comes back is a warning, not a reassurance. Call (609) 246-0236. If the office is closed, or you cannot reach us, go to a hospital emergency room — most have an ophthalmologist on call. Say that you are worried about giant cell arteritis. Weakness, numbness or trouble speaking is a 911 call.
Giant cell arteritis is inflammation in the walls of medium and large arteries, most often the ones in the temples, the scalp and behind the eye. It almost never affects anyone under 50. Its danger to sight is the artery that feeds the optic nerve: when that artery closes, the nerve loses its blood supply and the vision it carried is usually lost for good, sometimes within hours.
The treatment is simple, effective and available in any emergency room: high-dose steroids, started the same day the condition is suspected. Started in time, it protects the other eye and usually saves sight that has not yet been lost. That is why this page is mostly about recognizing it early.
Warning signs
Most people with giant cell arteritis have several of these, and they often come on over a few weeks. Any one of them, new, in someone over 50, is worth a same-day call.
- A new headache, often at the temples or the back of the head, different from any headache you usually get, or a usual headache that has changed.
- A tender scalp. Brushing or combing the hair, wearing glasses, or resting the head on a pillow hurts.
- Jaw pain or tiredness when chewing that eases when you stop. This is the most telling single symptom, and it is easy to blame on teeth.
- Vision that blacks out or dims in one eye for seconds or minutes and then returns. It often comes before permanent loss, sometimes by days.
- Double vision, which may also come and go.
- Sudden loss of vision in one eye, often noticed on waking, usually painless.
- Feeling generally unwell: tiredness, low fever, night sweats, poor appetite or weight loss.
- Stiffness and aching in the shoulders and hips, worst in the morning. That is polymyalgia rheumatica, a related condition. About half of people with giant cell arteritis have it, and a smaller share of people with polymyalgia go on to develop giant cell arteritis.
In some people, a change in vision is the first and only sign, with no headache at all. If you are over 50 and vision in one eye has blacked out, even once, call the same day.
Who gets it
- Age. Almost always over 50, and most often in the seventies and eighties.
- Women are affected two to three times as often as men.
- Northern European ancestry carries the highest rates, though anyone can get it.
- Polymyalgia rheumatica, now or in the past.
It is not caused by anything you did, and it is not contagious.
Why it is an emergency
The inflamed artery wall narrows the vessel until blood can no longer get through. Behind the eye, that starves the optic nerve, which has no backup supply. Vision lost this way rarely returns, even with treatment, so the aim is to start treatment before it happens.
The second eye is the reason not to wait. Without treatment, the other eye can follow within days or weeks. Once steroids are started, that risk drops sharply, which is why doctors start them on suspicion and confirm the diagnosis afterwards, rather than waiting for test results.
Brief blackouts of vision, double vision and jaw pain when chewing are the signs most often seen in the days before permanent loss. They are the window.
How it is diagnosed
- At the eye exam
- Vision and side vision in each eye, the pupils, and a dilated look at the optic nerve, which swells and turns pale when its blood supply fails. A swollen, chalky-white optic nerve in someone over 50 is a finding that is acted on the same day.
- Blood tests
- Two markers of inflammation, the ESR (sedimentation rate) and CRP, and a platelet count. They are raised in almost everyone with giant cell arteritis. Normal results make it less likely but do not rule it out when the symptoms fit.
- Temporal artery biopsy
- A short piece of the artery at the temple is removed under local anesthetic and examined. It remains the standard test in the United States. Steroids do not spoil it if the biopsy is done within a week or two of starting them, so treatment never waits for it.
- Ultrasound or other imaging
- An ultrasound of the temple arteries can show the inflamed wall, and some centers use it first. Scans of the larger arteries, including the aorta, are sometimes added.
If giant cell arteritis is suspected at a visit here, you are sent the same day to an emergency room or to an ophthalmologist for the blood tests and treatment, with the examination findings going with you.
Treatment
- High-dose steroids, the same day. Prednisone tablets, or steroids through a vein when vision has already been affected. Most people feel better within a day or two, which is itself a strong clue to the diagnosis.
- A slow taper over months, usually a year or more, guided by a rheumatologist. Coming down too fast is the commonest reason symptoms return.
- Medicines that let the steroid dose come down sooner. Tocilizumab, a weekly injection approved for giant cell arteritis in 2017, and upadacitinib, a daily tablet approved in 2025. Both reduced relapses in trials and are often used to limit how much steroid a person needs.
- Protection from the steroids' side effects: bone protection, checks on blood sugar and blood pressure, and attention to infections.
Long courses of steroids also affect the eyes. They can raise eye pressure and bring on cataract, so eye exams during treatment are part of the plan.
After treatment has started
- Take the steroid every day, exactly as prescribed. Never stop it suddenly, even when you feel well; the body needs the taper.
- Report any return of symptoms to the doctor managing the taper: headache, jaw pain, scalp tenderness, shoulder stiffness. A relapse is common and treatable.
- Any change in vision is still a same-day call, at any point in treatment.
- Keep the eye exams on the schedule you are given, for pressure and cataract while on steroids, and for the optic nerve.
- Carry a note that you take long-term steroids, in your wallet or the medical notes on your phone, so any doctor who treats you in an emergency knows.
Common questions
Is giant cell arteritis the same as temporal arteritis?
Yes. Temporal arteritis is the older name, from the artery at the temple that is most often involved and biopsied. Giant cell arteritis is the current name, because it can affect arteries elsewhere too, including the aorta.
My vision blacked out for a minute and came back. Can I wait for an appointment?
No. In someone over 50, a brief loss of vision in one eye needs to be seen the same day. It can be a warning sign of giant cell arteritis, and it can also be a sign of a blocked artery from the neck or heart, which carries a risk of stroke. Both are emergencies, and both are worked up quickly.
I already have a headache that is not going away. How do I know if it is this?
You cannot tell from home, and neither can a doctor without examining you and checking blood tests. What raises the concern is being over 50 with a headache that is new or different, especially with any of the other signs on this page. Call and describe it; if it fits, you will be seen the same day or sent to the emergency room.
Will the vision I lost come back?
Usually not, or only a little. That is the hard truth behind the urgency. Treatment protects what is left, and above all the other eye, which is why the same-day start matters so much.
Can it come back after treatment?
Symptoms often return during the steroid taper, especially in the first two years. A relapse is usually caught early by the symptoms and blood tests and managed by adjusting the dose or adding a medicine such as tocilizumab. Loss of vision during a relapse is uncommon once treatment is under way, but any vision change is still a same-day call.
Does this go through my vision plan or my medical insurance?
Visits for giant cell arteritis, or to rule it out, are medical visits and go through your medical insurance, even though you are seeing an optometrist. Vision plan or medical insurance explains the difference. In an emergency, come in or go to the emergency room first and sort out the coverage afterwards.
Call the office
If any of this describes you, call rather than book online, so you can be seen today. If the office is closed, or you cannot reach us, go to a hospital emergency room — most have an ophthalmologist on call.
Khoury Eye Care, Hamilton Mall, 4403 Black Horse Pike, Mays Landing. Dilated examination, optic nerve imaging and visual field testing are done in this office.
Sources
The figures and recommendations on this page come from the following. Ask at your visit if you would like a copy of any of them.
- Maz M, Chung SA, Abril A, et al. 2021 American College of Rheumatology/Vasculitis Foundation guideline for the management of giant cell arteritis and Takayasu arteritis. Arthritis & Rheumatology. 2021;73(8):1349-1365.
- Hellmich B, Agueda A, Monti S, et al. 2018 update of the EULAR recommendations for the management of large vessel vasculitis. Annals of the Rheumatic Diseases. 2020;79(1):19-30.
- Hayreh SS, Podhajsky PA, Zimmerman B. Ocular manifestations of giant cell arteritis. American Journal of Ophthalmology. 1998;125(4):509-520.
- Kermani TA, Schmidt J, Crowson CS, et al. Utility of erythrocyte sedimentation rate and C-reactive protein for the diagnosis of giant cell arteritis. Seminars in Arthritis and Rheumatism. 2012;41(6):866-871.
- Stone JH, Tuckwell K, Dimonaco S, et al. Trial of tocilizumab in giant-cell arteritis. New England Journal of Medicine. 2017;377(4):317-328.
- Blockmans D, Penn SK, Setty AR, et al. A phase 3 trial of upadacitinib for giant-cell arteritis (SELECT-GCA). New England Journal of Medicine. 2025.
- US Food and Drug Administration. Approval of Rinvoq (upadacitinib) for giant cell arteritis in adults, April 2025; approval of Actemra (tocilizumab) for giant cell arteritis, May 2017.