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OVERVIEW

What is sarcoidosis?

Sarcoidosis is a disease in which immune cells form small lumps, called granulomas, in your organs. Experts believe that inflammation causes these granulomas to form. The inflammation could be triggered by an infection or exposure to certain substances in your environment.

Sarcoidosis is most common in the lungs, skin, or lymph nodes. If you have this disease, you may not have any symptoms. Or you may have serious problems with many different parts of your body.

The exact cause of sarcoidosis is unknown. Sarcoidosis is most common in adults between 20 and 40 years of age. It’s more common in women than in men. Worldwide, it occurs more often in African Americans and northern Europeans, especially people from Scandinavia.

Sarcoidosis is not contagious. This means you can’t catch sarcoidosis from another person who has the disease.

SYMPTOMS

What are the symptoms of sarcoidosis?

Most people who have sarcoidosis have few, if any, symptoms. Less than half of people who have this disease need any treatment. (Often, sarcoidosis is found when a chest X-ray is done for another reason.) Some people will have general feelings of illness, such as fatigue, fever, or swelling and pain in the joints. Others will experience symptoms based on the part of the body that is affected.

The most common symptoms of sarcoidosis involve the lungs, skin, eyes and liver.

Lungs

The lungs are the most commonly affected part of the body in people who have sarcoidosis. Lung or chest symptoms include:

• Chest pain.
• Dry cough.
• Shortness of breath.
• Coughing up blood (this is rare, but it is serious).

Skin

Sarcoidosis may cause skin problems.  These could include:

• Hair loss.
• Skin sores (raised, red, firm, usually on the front of the lower legs).
• Rash.
• Scars that become raised or inflamed.

Eyes

Eye symptoms caused by sarcoidosis can make it hard to see, but they rarely cause blindness. They include:

• Dry eyes.
•  
• Burning or pain.
• Discharge from the eye or watery eyes.

Liver

Sarcoidosis can cause a person’s liver to become enlarged. Some people have abnormal liver tests and/or a liver problem called cirrhosis. However, this is rare.

Symptoms are much less common in the other areas of the body, but may include the following:

• Nervous system. Although the nervous system isn’t usually affected by sarcoidosis, the disease can cause muscle weakness or paralysis, seizures, tremors (shaking), poor coordination, hearing loss or problems walking.
• Sarcoidosis can cause the heart to beat abnormally. It can also cause the heart to be unable to pump blood properly. This is called congestive heart failure.
• Symptoms involving the bones may include pain, swelling and joint stiffness. The hands and feet are most often affected.
• A very small percentage of people who have sarcoidosis have symptoms involving their kidneys, such as kidney stones.

CAUSES

What causes sarcoidosis?

Healthcare providers don’t know the exact cause of sarcoidosis. They think having certain genes makes it more likely that a person will develop the disease. Triggers of the disease could include infection with a bacteria or virus, or contact with something in your environment, such as dust or chemicals.

You are at higher risk of developing sarcoidosis if you:

• Are female.
• Work or live around substances that cause inflammation, such as insecticides or mold.
• Have had lymphoma, a type of blood cancer.
• Are of African or Scandinavian descent.
• Have a close relative who has sarcoidosis.

DIAGNOSIS & TESTS

How is sarcoidosis diagnosed?

To find out if you have sarcoidosis, your healthcare provider will perform a physical exam. Then you may undergo a variety of tests, as they may want to rule out other diseases that can cause similar symptoms. They may order blood tests, imaging tests, or a biopsy (tissue sample) of an affected organ. Blood tests can help look for other conditions that may be causing your symptoms. Imaging tests could include X-rays, CT scans, MRIs, or ultrasound. These tests can be used to look for granulomas. A biopsy can also show if you have granulomas.

PREVENTION

Can sarcoidosis be prevented or avoided?

There is no way to avoid getting sarcoidosis. If you are at higher risk for the disease, it may be better for you to avoid environmental substances that are known to trigger it. These could include insecticides, mold, or other substances.

TREATMENT

How will my healthcare provider treat my sarcoidosis?

Not everyone who has sarcoidosis needs treatment. Sometimes it goes away on its own. Your treatment will depend on your symptoms, which organs are affected, and how those organs are working.

Your healthcare provider will probably treat sarcoidosis if it involves your kidneys, eyes, heart, nervous system or lungs (especially if breathing problems are getting worse). They will treat the disease if you have skin lesions that bother you or if your sarcoidosis is very severe. Your healthcare provider will try to do the following:

• Reduce any inflammation that may interfere with the way your organs work;
• Prevent permanent scarring of the lungs if they’re affected; and
• Decrease any symptoms you have.

 Many medicines can be used to treat sarcoidosis. The most common are called corticosteroids. They help your condition by reducing inflammation. How long you take the medicine depends on how severe the disease is and how well you respond to the medicine. Other medicines are sometimes used to treat more severe forms of sarcoidosis.

Living with sarcoidosis

In many people, sarcoidosis gets better all by itself. Women and people who have less severe lung involvement usually do the best. If you have sarcoidosis, you should discuss your illness in more detail with your healthcare provider. You and your healthcare provider should work together as partners to create a treatment plan that is right for you.

There are many factors that will determine how often you see your doctor. This includes how severe your symptoms are, which organs are affected, your treatment, and if you have any side effects. Even if you don’t have any symptoms, it is important to see your doctor for ongoing care.

Complications

Sometimes serious sarcoidosis is left untreated, or treatment doesn’t work. Then there may be complications. The continued inflammation can cause scarring. This scarring can cause serious or life-threatening damage to the organs, which could result in:

• Vision loss or blindness.
• Heart complications, such as heart failure or heart attack.
• Kidney conditions, such as kidney stones or kidney failure.
• Cirrhosis of the liver.
• Lung diseases, such as pulmonary fibrosis.
• Problems with the nervous system, including brain tumors, meningitis, or nerve pain.

Most of these problems are avoidable if you get proper treatment. Don’t ignore any symptoms you are having. Stay in regular contact with your healthcare provider and attend all follow-up appointments.