Giant Cell Arteritis (Formerly Temporal Arteritis)

What is giant cell arteritis?

Giant cell arteritis (GCA), previously known as temporal arteritis, is a form of vasculitis (inflammation of your blood vessels). It affects the large blood vessels in your body, particularly the arteries in your head, neck and arms. These arteries become inflamed, swollen and constricted (narrowed). Inflammation and narrowing of these arteries can interrupt their blood flow, which can damage vital organs and tissues.

Your temporal arteries, which run along your temples, supply blood to your scalp, jaw muscles and the optic nerve in your eye. When GCA involves these arteries, it can lead to various complications, including blindness. GCA can also involve the largest blood vessels in the body, like your aorta and its branches. Inflammation in your aorta (aortitis) can lead to serious health problems.

Giant cell arteritis commonly occurs together with another inflammatory condition called polymyalgia rheumatica (PMR).

Is GCA a serious condition?

Yes. If not diagnosed and treated quickly, giant cell arteritis can cause:

• Damage to your eyesight, including sudden vision loss or blindness in one or both eyes
• Damage to your blood vessels, like an aneurysm (enlargement or widening of a blood vessel that puts it at risk of bursting)
• Other disorders, including stroke or transient ischemic attacks (“mini-strokes”)

How common is GCA?

GCA is one of the most common forms of vasculitis, but it’s a relatively rare condition, affecting about 19-23 out of every 100,000 people in the United States.

What are giant cell (temporal) arteritis symptoms?

The most common symptom of giant cell arteritis is a throbbing, continuous headache on one or both sides of your forehead. Other symptoms may include:

• Tenderness at your scalp or temples
• Jaw pain that becomes worse with chewing
• Vision problems, like double vision, blurry vision or temporary vision loss
• Fatigue
• Fever
• Loss of appetite or weight loss
• Muscle aches in your upper arms and shoulders, hips, upper thighs, lower back and buttocks

GCA often occurs together with another condition called polymyalgia rheumatica (PMR). This is an inflammatory condition that causes significant stiffness and pain in your shoulders and hips. PMR can occur by itself (and is far more common on its own than GCA is). But up to 40-60% of people with GCA have PMR, and 10-20% of people with isolated PMR, can go on to develop GCA.

What causes giant cell arteritis?

Researchers don’t know the exact cause of giant cell arteritis, but many believe it’s an autoimmune or autoinflammatory disease. This means your body’s immune system attacks your healthy blood vessels. Because the condition mainly affects people as they age, some believe it could be linked to the aging process. They also believe genetics and environmental factors that stress your immune system may play a role.

Who does GCA affect?

Anyone can get GCA, but it’s most common in:

• Older people. GCA almost always affects people over the age of 50, and it seems to become more common as people age. It’s most common between the ages of 70 and 80.
• Females. Females experience the condition more often than males. However, males are more likely to experience blindness due to the condition.
• White people. GCA predominantly affects people of Northern European ancestry, more often than any other ethnic or racial group.

How is giant cell arteritis diagnosed?

Your healthcare provider will ask about your medical history and perform a physical examination. They’ll check to see if your pulses are weak in your arms and legs. They’ll also examine your head to look for scalp tenderness or swelling of your temporal arteries.

What tests will be done to diagnose GCA?

Your healthcare provider will first order blood tests, like erythrocyte sedimentation rate and C-reactive protein, to measure how much inflammation you have in your body. They may also test for anemia by measuring your hemoglobin levels (the part of your red blood cells that carries oxygen).

If they suspect giant cell (temporal) arteritis, your provider may order a temporal artery ultrasound or temporal artery biopsy. During a biopsy, a skilled healthcare provider removes a small piece of your artery. They send it to a pathologist to examine under a microscope and look for evidence of inflammation (vasculitis).

Other tests that are sometimes necessary include:

• Computed tomography (CT) scan
• Magnetic resonance imaging (MRI) scan
• Ultrasounds of the large arteries
• Positron emission tomography (PET) scan

What is the treatment for giant cell (temporal) arteritis?

Giant cell arteritis treatment should begin immediately to prevent vision loss. The primary treatment is a glucocorticoid, usually prednisone. You’ll likely start taking it at a dose of 40 mg to 60 mg per day (by mouth), and your provider will gradually reduce your dosage. If you already have vision loss or other vision symptoms, your provider may treat you with a high dose of glucocorticoids through a catheter in your vein (IV).

Since glucocorticoids can cause serious side effects, your provider will monitor your response to these medications closely. Because glucocorticoids suppress your immune system, side effects can include more frequent and more severe infections. They can also make your bones thinner, which raises your risk of fractures.

Other side effects may include:

• Cataracts
• High blood pressure
• High blood sugar
• Insomnia
• Mood swings
• Muscle loss and weakness, particularly in your legs
• Swelling, especially in your face and legs
• Weight gain

Your provider may want to test your bone density while you’re on glucocorticoids to monitor you for bone thinning. They might recommend treatments to keep your bones strong, like exercises, calcium and vitamin D supplements and possibly medications to prevent osteoporosis.

In 2017, the U.S. Food and Drug Administration approved a new biologic medication called tocilizumab (Actemra®) for the treatment of GCA. This medication is given as an injection (under your skin) or through an IV (in your vein). It can help decrease your need for glucocorticoids. Tocilizumab is associated with other side effects that your provider will discuss with you.

When should I see my healthcare provider?

If you’re experiencing symptoms of GCA or infection, or symptoms that are new for you, call your healthcare provider right away. Seeing your provider frequently and getting ongoing lab and imaging tests can help them detect a relapse early.

What questions should I ask my healthcare provider?

Questions to ask your healthcare provider include:

• What treatments do you recommend?
• What side effects of the treatment should I watch out for?
• What can I do to reduce side effects of my treatment?
• What complications can this condition cause?
• How will my condition be monitored?
• What are the features of a relapse?
• What symptoms should I contact you for?

What is the life expectancy of someone with giant cell arteritis?

Having GCA hasn’t been found to reduce life expectancy, although many different factors can affect this. With early diagnosis and treatment, the outlook is good, and symptoms often start to improve within days.

Without early treatment, the GCA can lead to permanent vision loss, and life-threatening complications, such as aneurysms and stroke. It’s important to see your healthcare provider right away if you experience any of the symptoms associated with GCA.

Once you’ve started treatment, your primary risk is from the side effects of treatment. Also, even with effective treatment and initial improvement, GCA can sometimes return (relapse). Researchers don’t know why relapses occur.

How do I take care of myself while living with giant cell arteritis?

Living with GCA can be challenging. To manage your condition and the side effects that you may experience from glucocorticoids, make sure that you:

• Eat healthy, nutritious foods, like lean meats, whole grains and fresh fruits and vegetables
• Get enough vitamin D and calcium to protect your bones
• Stay active with some sort of physical activity for at least 30 minutes a day
• Get at least seven to eight hours of sleep every night
• Take your prescribed medications as directed
• Visit your healthcare provider regularly
• Take steps to reduce your risk of infection

What should I avoid with GCA?

There are certain things you should avoid if you have GCA. These include:

• Factors that increase your risk of getting sick. The medications used to treat GCA weaken your immune system, putting you at greater risk of infection. To avoid getting sick, make sure to wash your hands, stay away from people who are sick and ask your healthcare provider about other measures that may decrease your risk of infection.
• Smoking. Smoking can increase your risk of developing GCA. Your blood vessel health will improve right away when you quit, and it’ll have lifelong benefits.
• Drinking alcohol. Alcohol can have a negative effect on your heart and blood vessel health. It can also speed up bone loss, and it may interact with medications you have to take for your condition.