Sarcoidosis

WHAT YOU SHOULD KNOW:

• Sarcoidosis is a condition that results in inflammation (swelling) of tissues and organs of the body. With sarcoidosis, granulomas (lumps) appear 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. In sarcoidosis, granulomas increase in size and number, and cause problems in areas where they grow. With sarcoidosis, granulomas are most often seen in the lungs or lymph nodes. It is thought that 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. Frequently being around chemicals or having family members who also have the disease may increase the risk of having 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, fatigue (getting tired easily), and skin lesions. You may also have chest pain, trouble breathing or thinking, coughing up blood, and painful swelling of muscles and joints. You need an x-ray, computerized tomography scan, magnetic resonance imaging (MRI), biopsy, and blood tests to diagnose sarcoidosis. Treatment aims to decrease the swelling of granulomas and prevent their increase in number. Your caregiver may give you medicines, such as steroids, cytotoxics, and pain medicines, to decrease signs and symptoms. He may have to do surgery to remove granulomas causing problems inside your body. Diagnosing and treating sarcoidosis as soon as possible may relieve your symptoms and help you keep doing your usual activities.

AFTER YOU LEAVE:

Medicines:

• Keep a written list of the medicines you take, the amounts, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not use any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
  
  
• Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Do not quit taking your medicines until you discuss it with your caregiver. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.

• Acetaminophen: This medicine is used to decrease pain and lower a high body temperature (fever). Taking too much acetaminophen can hurt your liver. Read labels so that you know the active ingredients in each medicine that you take. Talk to your caregiver before taking more than one medicine that contains acetaminophen. Ask your caregiver before taking over-the-counter medicine if you are also taking pain medicine prescribed (ordered) for you.
  
  
• Cytotoxic medicines: These medicines may decrease redness, pain, and swelling, and help your immune system to fight off disease.
  
  
• Heart medicines: Your caregiver may give anti-arrhythmics to help your heart beat correctly again.
  
  
• Nonsteroidal anti-inflammatory medicine: This family of medicine is also called NSAIDs. Nonsteroidal anti-inflammatory medicine may help decrease pain and inflammation (swelling). Some NSAIDs may also be used to decrease a high body temperature (fever). This medicine can be bought with or without a doctor's order. This medicine can cause stomach bleeding or kidney problems in certain people. Always read the medicine label and follow the directions on it before using this medicine.
  
  
• Steroids: Steroid medicine may be given to decrease inflammation, which is redness, pain, and swelling.

Ask your caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you may have. This way you will remember to ask these questions during your next visit.

Wellness hints:

• Eating and drinking:
  
  
  • Eat a variety of healthy foods such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meat and fish. Eating healthy foods may help you have more energy and heal faster. Ask your caregiver if you need to be on a special diet.
    
    
  • Men 19 years old and older should drink about 3.0 Liters of liquid each day (close to 13 eight-ounce cups). Women 19 years old and older should drink about 2.2 Liters of liquid each day (close to 9 eight-ounce cups). Follow your caregiver's advice if you must change the amount of liquid you drink. For most people, good liquids to drink are water, juices, and milk. If you are used to drinking liquids that contain caffeine, such as coffee, these can also be counted in your daily liquid amount. Try to drink enough liquid each day, and not just when you feel thirsty.
  
  
• Start exercising: Talk to your caregiver before you start exercising. Together you can plan the best exercise program for you. It is best to start slowly and do more as you get stronger. Exercising can help make your heart stronger, lower your blood pressure, and keep you healthy.
  
  
• Quit smoking: It is never too late to quit smoking. Smoking harms the heart, lungs, and the blood. You are more likely to have a heart attack, lung disease, and cancer if you smoke. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting.
  
  
• Avoid stress: Stress may slow healing and cause illness. Since it is hard to avoid stress, learn to control it. Learn new ways to relax, such as deep breathing. Talk to your caregiver about things that upset you.

For 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
  

CONTACT A CAREGIVER IF:

• You have a fever (increased body temperature).
  
  
• You have a bad 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 cannot make it to your next appointment.
  
  
• You have questions or concerns about your condition or medicines.

SEEK CARE IMMEDIATELY IF:

• You cannot feel your arms or legs, and they become weak.
  
  
• You have seizures (convulsions).
  
  
• You have trouble breathing all of a sudden.
  
  
• You have trouble thinking and remembering things.
  
  
• You have very bad pain in your chest.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

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.

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