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Living With Sarcoidosis

Sarcoidosis has no cure, but you can take steps to manage the disease. Get ongoing care and follow a healthy lifestyle. Talk with your doctor if you’re pregnant or planning a pregnancy.

Ongoing Care

Ongoing care is important, even if you don't take medicine for your sarcoidosis. New symptoms can occur at any time. Also, the disease can slowly worsen without your noticing.

How often you need to see your doctor will depend on the severity of your symptoms, which organs are affected, which treatments you're using, and whether you have any side effects from treatment. Even if you don’t have symptoms, you should see your doctor for ongoing care.

Your doctor may recommend routine tests, such as lung function tests and eye exams. He or she will want to check to make sure that the disease isn’t damaging your organs.

Discuss with your doctor how often you need to have followup visits. You may have some followup visits with your primary care doctor and others with one or more specialists.

Make sure to take all of your medicines as your doctor prescribes.

Lifestyle Changes

Making lifestyle changes can help you manage your health. For example, follow a healthy diet and be as physically active as you can. A healthy diet includes a variety of fruits, vegetables, and whole grains.

It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar.

For more information about following a healthy diet, go to the National Heart, Lung, and Blood Institute's (NHLBI’s) Aim for a Healthy Weight Web site, "Your Guide to a Healthy Heart," and "Your Guide to Lowering Your Blood Pressure With DASH." All of these resources include general information about healthy eating.

If you smoke, quit. Talk with your doctor about programs and products that can help you quit. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke.

If you have trouble quitting smoking on your own, consider joining a support group. Many hospitals, workplaces, and community groups offer classes to help people quit smoking.

For more information about how to quit smoking, go to the Health Topics Smoking and Your Heart article and the NHLBI’s “Your Guide to a Healthy Heart” booklet. Although these resources focus on heart health, both include general information about how to quit smoking.

Emotional Issues

Living with sarcoidosis may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you’re very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with sarcoidosis. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Pregnancy

Many women who have sarcoidosis give birth to healthy babies. Women who have severe sarcoidosis, especially if they’re older, may have trouble becoming pregnant. Sometimes sarcoidosis may get worse after the baby is delivered.

If you have sarcoidosis and are pregnant or planning a pregnancy, talk with your doctor about the risks involved. Also, if you become pregnant, it’s important to get good prenatal care and regular sarcoidosis checkups during and after pregnancy.

Some sarcoidosis medicines are considered safe to use during pregnancy; others are not recommended.

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Living With and Managing Sarcoidosis


Sarcoidosis Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Sarcoidosis, visit www.clinicaltrials.gov.

 
June 14, 2013 Last Updated Icon

The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.

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