Sarcoidosis: Care Instructions

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Overview

Sarcoidosis (say "sar-koy-DOH-sus") is a rare disease that causes tiny lumps of cells throughout the body called granulomas. 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 some people, sarcoidosis is a long-term disease that lasts several years or a lifetime. But for other people, it may 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 nodes, 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.

Although the cause is not known, the disease does not spread from person to person.

Not everyone who has sarcoidosis needs treatment. Sometimes the disease goes away on its own. It may be treated with corticosteroids and other medicines, especially if it causes symptoms. You may also have regular checkups and 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 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?

  • If you take medicine, take it exactly as prescribed. Call your doctor 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. 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 30 minutes on most days of the week. You also may want to swim, bike, or do other activities.

When should you call for help?

Call 911 anytime you think you may need emergency care. For example, call if:

  • You have severe trouble breathing.
  • You passed out (lost consciousness).

Call your doctor now or seek immediate medical care if:

  • You have changes in your vision.
  • You are very tired, get confused, or urinate a lot.
  • Your symptoms do not get better, or they get worse.

Watch closely for changes in your health, and be sure to contact your doctor if you have any problems.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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The Health Encyclopedia contains general health information. Not all treatments or services described are covered benefits for Kaiser Permanente members or offered as services by Kaiser Permanente. For a list of covered benefits, please refer to your Evidence of Coverage or Summary Plan Description. For recommended treatments, please consult with your health care provider.