Sarcoidosis Living With
Manage your condition
Even if you do not have symptoms of sarcoidosis, you should see your healthcare provider for ongoing care. For example, your provider will monitor you for side effects from long-term use of corticosteroids or other medicines.
If the disease is not worsening, you may be watched closely to see whether the disease goes away on its own. If the disease does start to get worse, your doctor can prescribe treatment.
Remission and flares
If your sarcoidosis goes into remission, your doctor may carefully stop your medicines. However, you will still need to watch for a flare. If you do have a flare, you may need another round of treatment.
Flares can be hard to predict. Most often, they happen within six months of stopping treatment. The longer you go without symptoms, the less likely you are to have a flare.
Tests for complications
Some people have sarcoidosis that persists or comes back for many years after diagnosis. This may be called chronic, severe, advanced, refractory, or progressive sarcoidosis. Your provider may order tests to keep track of your condition and check for complications. The Diagnosis section has information about these tests.
Know when to seek medical care
Watch for the warning signs of complications that may require emergency medical treatment. These include signs of changes in vision that may be a sign of brain tumors. Other complications that require immediate medical attention include kidney failure, cardiac arrest, and sudden shortness of breath or muscle weakness.
Make healthy lifestyle changes
A healthy lifestyle may help you feel better and prevent sarcoidosis from getting worse.
- Get regular physical activity. Extreme tiredness can make it hard to exercise if you have sarcoidosis. However, physical activity can improve energy and help with other symptoms, such as shortness of breath and muscle weakness. Try to stay active but talk with your doctor about what level of physical activity is right for you.
- Quit smoking. If you smoke, quit. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke. Visit Smoking and Your Heart and our Your Guide to a Healthy Heart. For free help quitting smoking, you may call the National Cancer Institute's Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).
- Try to get enough good quality sleep. Experts recommend that adults get 7 to 9 hours of sleep per day.
Learn more about these healthy lifestyle changes in our Heart-Healthy Living Health Topic.
Take care of your mental health
Sarcoidosis may make you feel lonely, anxious, or depressed. You may continue to feel very tired even after your treatment has ended. But certain activities or treatments may help improve your mental health.
- Counseling, particularly cognitive therapy, can be helpful.
- Joining a patient support group may help you adjust to living with sarcoidosis. You can see how other people manage similar symptoms and their condition. Talk with your provider about local support groups or check with an area medical center.
- Talk to your doctor about medicines or other treatments. Antidepressants or other treatments may improve your quality of life.
- Support from family and friends can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.
Most women who have sarcoidosis give birth to healthy babies. However, they have a higher risk of certain complications, including:
- Heavy bleeding after giving birth
- Preterm delivery
- Preeclampsia, which is high blood pressure and too much protein in the urine
- Venous thromboembolism, which is a in the lungs or deep veins, usually in the legs
If you have sarcoidosis and are pregnant or planning to become pregnant, talk with your doctor. It is important to get good prenatal care and regular sarcoidosis checkups before, during, and after pregnancy. Also, tell your doctor about any medicines you take. Some sarcoidosis medicines are not safe to take during pregnancy.