Sarcoidosis

GENERAL INFORMATION:

What is sarcoidosis? Sarcoidosis is a condition that results in inflammation (swelling) of tissues and organs of the body. With this condition, granulomas (lumps) grow in the lungs, skin, lymph nodes, or eyes. Granulomas may appear when your body is fighting off certain infections. Normally, granulomas decrease in number and disappear after fighting harmful germs and substances. With sarcoidosis, granulomas increase in size and number, and cause problems in areas where they grow. Most people who get sarcoidosis have granulomas grow in their lungs. Sarcoidosis may affect women more than men, and usually occurs between 20 and 40 years of age.

What causes sarcoidosis? The cause of sarcoidosis is not known. Sarcoidosis may be caused by problems in the immune system, such as an autoimmune disease. The immune system is your body's defense system against infections and diseases. An autoimmune disease happens when immune cells produce antibodies that attack your own body's cells. The following may increase your risk of having sarcoidosis:

• Frequently being around chemicals and substances like clay, pine, pollen, or talc, and metals like aluminum, beryllium, and zirconium.
  
  
• Germs such as bacteria, viruses, and fungi.
  
  
• Having family members or close relatives who have sarcoidosis or immune system diseases.

What are the signs and symptoms of sarcoidosis? Signs and symptoms of sarcoidosis may come and go. You may have signs and symptoms for a time, then they will get better, and start up again. These may include weight loss, weakness, fever, and fatigue (getting tired easily). Granulomas may cause other signs and symptoms when they appear in any of the following:

• Brain: Problems in thinking, remembering things, or controlling your feelings and actions, trouble hearing, headaches, and seizures (convulsions).
  
  
• Eyes: Pain and swelling in the eyes, and problems seeing.
  
  
• Heart: Chest pain, abnormal heartbeats, and heart completely stopping.
  
  
• Lungs: Cough, trouble breathing, and hemoptysis (coughing up blood).
  
  
• Muscles, bones, and joints: Pain, swelling, redness, and warmth in the affected areas. Any joints including your ankles, knees, elbows, wrists, hands, and fingers may be affected.
  
  
• Skin: Granulomas may appear as macules (flat, colored areas), papules (lumps smaller than a penny), and nodules (lumps bigger than a penny). Another lesion that may appear is erythema nodosum. These lesions are painful red lumps on the front of your legs.
  
  
• Other areas: Granulomas in the liver may make your skin yellowish in color, and may cause kidney stones when found in the kidneys. In your intestines (bowels), granulomas may block the passage of food or blood and cause pain and bleeding. Lymph nodes (small bean shaped organs that contain macrophages and lymphocytes) in the neck, armpits, and groin may get bigger and painful.

How is sarcoidosis diagnosed? Your caregiver may need a complete medical history from you. He may also need to know the health condition of your family. A complete physical exam and eye exam may be done. You may have any of the following tests:

• Biopsy: Other types of granulomas may be caused by conditions such as tuberculosis. This test will get a sample of tissue from areas such as the lungs. The sample will be sent to a lab for tests. A biopsy may show if the granulomas are caused by sarcoidosis.
  
  
• Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. It is tested to see how your body is doing. It can give your caregivers more information about your health condition. You may need to have blood drawn more than once.
  
  
• Computerized tomography scan: This is also called a CAT scan. A special x-ray machine uses a computer to take pictures of areas inside your body affected by sarcoidosis. It may be used to look at brain, lungs, muscles, and bones. You may be given dye before the pictures are taken. The dye is usually given through a small tube called an IV. The dye may help your caregiver see the pictures better. People who are allergic to shellfish (lobster, crab, or shrimp) may be allergic to some dyes. Tell the caregiver if you are allergic to shellfish, or have other allergies or medical conditions.
  
  
• Diascopy: This is a test where your caregiver presses a small clear glass plate flat on lesions on your skin. This allows your caregiver to see and examine the lesion on your skin better.
  
  
• Magnetic resonance imaging: This test is also called an MRI. Pictures of the affected areas allow your caregiver to see any problems inside your body. It may be used to look at your brain, lungs, muscles, and bones. You will need to lay still during an MRI. Never enter the MRI room with an oxygen tank, watch, or any other metal objects. Doing this can cause serious injury.
  
  
• Urine sample: A sample of your urine is collected and sent to a lab for tests. Your caregiver may give you a special wipe and clean cup. Use the wipe to clean the skin around the opening where you pass urine. Urinate into the clean cup. Put the lid on the cup. Do not touch the inside of the cup or the lid. Give the urine sample to your caregiver.
  
  
• X-ray: This is a test that takes pictures of the inside of your body. Your caregiver may use it to look for any problems and see how your lungs and heart are doing. It may show granulomas, fluid, and other problems around your heart and lungs.

How is sarcoidosis treated? Many people with sarcoidosis get better on their own, even without treatment. Your caregiver may not give you any medicine at first and just watch your condition carefully. He may ask you to come back for regular check-ups. If signs and symptoms show up, your caregiver may start giving you medicines. Treatment for sarcoidosis aims to decrease the swelling of granulomas and prevent the increase in number. This may help affected areas function well again and prevent further damage. You may have any of the following:

• Medicines: You may be given medicines to treat pain, swelling, or fever. Steroids to help decrease redness, pain, and swelling of the affected areas may be given. Your caregiver may give medicines that may help your heart beat properly again. You may also be given medicines that help your immune system to fight off disease. It may take some time before medicines decrease or take away your symptoms.
  
  
• Surgery: Your caregiver may have to remove granulomas inside your body that cause very bad signs and symptoms. Your caregiver may cut away or use lasers (powerful light beams) to remove skin lesions. He may also use dermabrasion to gently smooth uneven skin or scars.

Where can I get more information? Having sarcoidosis may be hard for you. You and those close to you may feel angry, sad, or frightened. These feelings are normal. Talk to your caregivers, family, or friends about your feelings. Contact any of the following for more information:

• American Lung Association
  61 Broadway, 6th floor
  New York City, NY 10006
  Phone: 1-800-586-4872
  Web Address: http://www.lungusa.org
  

• National Institute of Arthritis and Musculoskeletal and Skin Disease
  Information Clearinghouse
  National Institutes of Health
  1 AMS Circle
  Bethesda, MD 20892-3675
  Phone: 1-301-495-4484
  Phone: 1-877-226-4267
  Web Address: http://www.niams.nih.gov
  

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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