Giant Cell Arteritis

Symptoms

The first signs and symptoms of giant cell arteritis (GCA) can be hard to pinpoint. People with the condition may start feeling fatigued and generally feel unwell. It often feels like having the flu: headache, fatigue, and muscles may feel sore and achy. A fever and weight loss can also occur.

The most common initial symptom is persistent pain or tenderness around one or both temples. It is more common to affect a single side of the head. The side of the head (temple area) can become very sensitive, usually just above the ear on the side of the head (over the temporal artery). People with giant cell arteritis often find it hurts to comb their hair or to lie on a pillow on the side that’s affected. Sometimes the temporal artery can become quite visible or prominent, but this is rare.

When the condition becomes severe, blood flow to areas supplied by the arteries can be cut off. This can lead to symptoms such as vision loss, double vision, and eventually blindness. Other symptoms to watch out for include pain around other areas of the head such as the forehead, scalp, in the jaw when chewing and pain in the tongue or teeth.

Giant cell arteritis can be accompanied by another condition called Polymyalgia Rheumatica (PMR). It is estimated that up to 70% have PMR with GCA. PMR results in pain and stiffness in the neck, shoulders, and hip region. This pain and stiffness is much more prominent in the mornings and can last hours.

Diagnosis

Giant Cell Arteritis (GCA) is best diagnosed by a rheumatologist, a type of doctor that specializes in arthritis and autoimmune disease.

To diagnose GCA, doctors will take a careful and complete history and perform a thorough physical examination. Based on this information, they will likely order tests like blood tests, scans, and other types of tests such as a biopsy (tissue sample) to confirm their diagnosis.

Common Tests

Causes

Scientists don’t fully understand what causes giant cell arteritis (GCA), but researchers around the world are actively studying this condition to learn more about it.

Its known that parts of the immune system are activated or (turned on) in people with giant cell arteritis and other types of vasculitis (diseases involving inflamed blood vessels). One possibility is that the immune system is triggered by an infection and starts to attack the arteries. If this is the case, the source of such an infection has yet to be identified.

Giant cell arteritis is sometimes associated with another rheumatic disease called polymyalgia rheumatica (PMR). Up to 70% of the people who have giant cell arteritis also have PMR.

Treatments

Giant Cell Arteritis (GCA) is a medical emergency that must be treated very quickly and aggressively to help prevent serious consequences including blindness and stroke. Without effective treatment, inflammation can damage the arteries that supply important organs and tissues in the body, such as the eyes and the brain.

Medications for giant cell arteritis are aimed at controlling inflammation. In some people, once inflammation is brought under control, the disease can go into remission (an absence of disease activity). When that happens, doses of medicines can sometimes be tapered down and eventually stopped.

In other people, giant cell arteritis behaves more like a chronic (long-term) disease that must be controlled with small doses of medicine on an ongoing basis.

Medications for GCA

Corticosteroids (prednisone)

Corticosteroid medications like prednisone are very effective medications to control the symptoms of GCA. It helps control inflammation and can prevent long-term damage.

It is usually started at a high dose (50-100 mg) to quickly bring inflammation under control. Most people start to feel better within a few days of starting prednisone. Once symptoms have improved and markers of inflammation have come back to normal, the dose can start to be tapered down.

In the short-term, prednisone works very well to control symptoms. When used for long periods of time, prednisone can have side effects including bone loss (osteoporosis). People taking prednisone should discuss the risks and benefits of the medication with their rheumatologist.

DMARDs (Methotrexate)

Disease Modifying Anti-Rheumatic Drugs (DMARDs) are a type medication that are typically used to treat rheumatoid arthritis and other types of inflammatory arthritis. Methotrexate is a common example that has been shown effective in treating some people with giant cell arteritis.

Most DMARDs take some time before they begin to work (about 6-12 weeks) so it’s important for people to keep taking them even when they don’t notice effects right away. Taking a DMARD like methotrexate can help reduce the dose of prednisone that a person with GCA needs to keep inflammation under control to reduce the risk of side effects.

Biologics

Biologics are a class of medications specifically designed to target the immune system. Blocking a molecule called Interleukin-6 (IL-6) has shown tremendous improvement in the symptoms of GCA and reduced the need for prednisone in many patients. A biologic that blocks IL-6, called Actemra (tocilizumab), has shown excellent results in treating patients with GCA. It’s use is becoming more widespread.

Living with GCA

The pain and stiffness caused by GCA can sometimes limit people’s normal activities, including work. There are many things people can do to lessen the impact of GCA on their work and daily routine.

We recommend adjusting features of the workplace to help make working with GCA easier. For example, people that sit for much of the day can adjust the position of chairs and desks for proper posture. Vehicle seats can be adjusted to make driving more comfortable and reduce stress on joints and affected tissues.

Those who find out they have GCA while they’re still young can consider choosing work that isn’t physically demanding on their joints and back.

Exercise is important to overall health. It also helps keep the joints moving properly, and helps protect them by strengthening the muscles around them.

The level and amount of exercise people with GCA can do depends on the activity of their disease.

A trained arthritis physiotherapist is the best person to help design an exercise program tailored to the needs of patients with GCA.

The following are some useful articles on exercising with arthritis:

Exercise and Arthritis: An article by arthritis physiotherapist Marlene Thompson

Exercising in a Flare: Another excellent article by Marlene Thompson on how to cope with flares through your exercise routine.

Alcoholic beverages are not an effective treatment for GCA, and they can interact with many medications.

Smoking is not healthy for people with GCA. It can make symptoms worse and harder to treat.

Research has shown that some arthritis medications do not work as well in people who smoke.

We recommend that smokers quit immediately to reduce the impact of their symptoms, improve the effectiveness of their medications, and improve their overall health.

Travel is still possible when you have GCA.

It is best for people with this disease to get organized well in advance of a trip to ensure a smooth, comfortable, and enjoyable time.

Check out our Travel Checklist page.

Though GCA does not particularly cause a loss of sex drive, it can cause pain, fatigue and emotional hardships. These hardships risk creating barriers to sexual needs, ability, and satisfaction.

People with GCA can take comfort knowing that sex and intimacy can be maintained. In many cases, it can help draw partners closer together, especially through improved communication.

For more information on intimacy and arthritis, a great book is: Rheumatoid Arthritis: Plan to Win by Cheryl Koehn, Taysha Palmer and John Esdaile.

Giant Cell Arteritis (GCA) has no effect on fertility. The chances of getting pregnant for people with GCA are the same as with people that don’t have it. GCA also has no known effects on the developing fetus or the newborn.

The two main issues doctors worry about with GCA and pregnancy are:

Following the basics of healthy eating can help improve health and well-being in everyone, including those with GCA. Keeping a healthy weight helps reduce the load on weight-bearing joints including the spine, hips, and knees, making it easier to live with the disease.

Unfortuantely, no special diet has ever been proven to significantly alter the course of GCA or any other types of arthritis.

In addition, no known natural remedies or complementary therapies have been proven to help GCA in any significant way.

People with GCA should consult with their doctor to make sure that any supplements or alternative therapies they consume will not negatively interact with their medications.

Its very important for people with GCA to attend regularly scheduled appointments with their rheumatologist, and promptly get any tests that are ordered by their doctors.

It is often very important that medications are taken exactly as prescribed. Patients should always talk to their doctor about any issues they experience, or if they would like to change anything.

Giant Cell Arteritis is a chronic disease and a rheumatologist is the best partner in helping patients achieve the best quality of life possible.

Additional Resources for People with GCA