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Sarcoidosis

What is sarcoidosis?

Sarcoidosis is a condition in which inflammatory cells collect in tissues and organs. These cells form granulomas (lumps) in the lungs, skin, lymph nodes, or eyes.

What increases my risk for sarcoidosis?

The cause of sarcoidosis is not known. Sarcoidosis may be caused by an autoimmune disease. An autoimmune disease happens when immune cells produce antibodies that attack your own body's cells. The following may increase your risk of sarcoidosis:

  • Being female

  • Age 20 to 40 years old

  • Frequent exposure to chemicals, metals, and substances like clay, pine tree, pollen, or aluminum.

  • Germs such as bacteria, viruses, and fungi.

  • Have family members or close relatives who have sarcoidosis or autoimmune diseases

What are the signs and symptoms of sarcoidosis?

Signs and symptoms include weight loss, weakness, fever, and fatigue. Granulomas may cause other signs and symptoms when they appear in any of the following:

  • Brain: You may have problems thinking, remembering things, or controlling your feelings and actions. You may also have trouble hearing, headaches, and seizures.

  • Eyes: Granulomas in the eyes can cause pain, swelling, and vision changes.

  • Heart: You may have chest pain, abnormal heartbeats, or your heart may stop beating.

  • Lungs: You may have a cough, trouble breathing, and hemoptysis (coughing up blood).

  • Muscles, bones, and joints: Your joints, muscles, and bones may be painful, swollen, red, and warm.

  • Skin: Granulomas may appear as flat or raised lumps in your skin. You may also get red lumps on the front of your legs (erythema nodosum).

  • Other organs: Granulomas in the liver may cause your skin to turn yellow and may cause kidney stones when found in the kidneys. Granulomas in your intestines may block the passage of food or blood and cause pain and bleeding. You may have swollen, painful lymph nodes in your neck, armpits, or groin.

How is sarcoidosis diagnosed?

Your caregiver will examine you and ask you about other health conditions you may have. He may ask if you have family members with sarcoidosis or autoimmune diseases. He may also do an eye exam. You may have any of the following tests:

  • Blood tests: These are done to look for signs of inflammation. They may also check for liver and kidney function.

  • Urine test: These are done to check for blood in your urine. This is a sign of the condition affecting your kidneys.

  • Diascopy: Your caregiver will press on skin lesions using a small glass plate. This allows your caregiver to examine any color changes of the lesion.

  • Chest x-ray: This is a picture of your lungs and heart. It may show granulomas, fluid, and other problems.

  • CT scan: This test is also called a CAT scan. An x-ray machine uses a computer to take pictures of your brain, lungs, muscles, and bones. You may be given a dye before the pictures are taken to help caregivers see the pictures better. Tell the caregiver if you have ever had an allergic reaction to contrast dye

  • MRI: This scan uses powerful magnets and a computer to take pictures of your brain, lungs, muscles, and bones. You may be given dye to help the pictures show up better. Tell the caregiver if you have ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the caregiver if you have any metal in or on your body.

  • Biopsy: A small amount of tissue will be removed from your lungs or other affected areas and tested. This will show if the granulomas are caused by sarcoidosis.

How is sarcoidosis treated?

Many people with sarcoidosis get better without treatment. You may also have any of the following:

  • Medicines:

    • Steroids: This medicine is given to help slow down your immune system and reduce the symptoms of sarcoidosis.

    • Cytotoxic medicines: These decrease redness, pain, and swelling, and help slow down your immune system.

    • NSAIDs: These medicines decrease swelling and pain. You can buy NSAIDs without a doctor's order. Ask your caregiver which medicine is right for you and how much to take. Take as directed. NSAIDs can cause stomach bleeding or kidney problems if not taken correctly.

    • Acetaminophen: This medicine decreases pain and fever. You can buy acetaminophen without a doctor's order. Ask how much to take and how often to take it. Follow directions. Acetaminophen can cause liver damage if not taken correctly.

  • Surgery: You may need surgery to remove granulomas that cause severe signs and symptoms. Caregivers may use lasers (light beams) or dermabrasion to remove or smooth skin lesions.

What are the risks of sarcoidosis?

Surgery may cause bleeding or an infection. If not treated, granulomas may cause further damage to your lungs. You may have trouble breathing and feel very tired most of the time. Granulomas in your brain may cause problems thinking, remembering things, and controlling your actions and feelings. You may have loss of vision or hearing or seizures. Your heart may be affected and this can be life-threatening.

How can I manage my symptoms?

  • Eat a variety of healthy foods: Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Ask if you need to be on a special diet.

  • Get plenty of exercise: Ask your caregiver about the best exercise plan for you. Exercise may help decrease fatigue and improve your symptoms.

  • Do not smoke: If you smoke, it is never too late to quit. Smoking increases your risk of further lung problems. Ask your caregiver for information if you need help quitting.

When should I contact my caregiver?

Contact your caregiver if:

  • You have a fever.

  • You have a severe headache and pain in your neck.

  • You have chills, a cough, or feel weak and achy.

  • You have pain, redness, and swelling in your muscles and joints.

  • Your skin is itchy, swollen, or has a rash.

  • You have questions or concerns about your condition or care.

When should I seek immediate care?

Seek care immediately or call 911 if:

  • You cannot feel your arms or legs, or they become weak.

  • You have seizures.

  • You have sudden trouble breathing.

  • You have trouble thinking and remembering things.

  • You have severe chest pain.

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

© 2014 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

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