Sarcoidosis: Care Instructions

Your Care Instructions

Sarcoidosis (say "sar-koy-DOH-sus") is a rare disease that causes tiny lumps of cells throughout the body called granulomas. These lumps are too small to see or feel. They can form anywhere on the inside or outside of the body and can cause permanent scar tissue. They often form in the lungs, lymph nodes, liver, skin, or eyes. Sarcoidosis may affect how an organ works. For instance, if it is in the lungs, you may be short of breath.

For most people, sarcoidosis is a long-term disease that lasts several years or a lifetime. But some cases go away in a few months. Experts have no way of knowing how it will affect you. For some people, the disease may cause no symptoms at all. For others, symptoms may include fever, body aches, swollen lymph glands, shortness of breath, painful joints, and numbness. It may lead to lung or heart problems. Sometimes sarcoidosis can cause high calcium levels in the blood.

Sarcoidosis occurs most often in young and middle-aged adults. Although the cause is not known, the disease does not spread from person to person.

Different types of sarcoidosis have different treatments. Sarcoidosis may require long-term treatment (lasting months to years) with corticosteroids and other medicines, especially if it causes symptoms. You may also need regular tests.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

Take your medicines exactly as prescribed. Call your doctor or nurse call line if you think you are having a problem with your medicine.
Do not smoke. Smoking can make sarcoidosis worse. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
Avoid dust, smoke, and fumes. They can harm your lungs.
Drink plenty of fluids, enough so that your urine is light yellow or clear like water. If you have kidney, heart, or liver disease and have to limit fluids, talk with your doctor before you increase the amount of fluids you drink.
If your doctor recommends it, get more exercise. Walking is a good choice. Bit by bit, increase the amount you walk every day. Try for at least 2½ hours a week. You also may want to swim, bike, or do other activities.