Sarcoidosis involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas because they look like grains of sugar or sand. They are very small and can be seen only with a microscope.
These tiny granulomas can grow and clump together, making several large and small groups of lumps. If many granulomas form in an organ, they can affect how the organ works. This can cause symptoms of sarcoidosis.
Sarcoidosis is not a form of cancer.
Sarcoidosis was once thought to be an uncommon condition. It's now known to affect tens of thousands of people throughout the United States. Because many people who have sarcoidosis have no symptoms, it's hard to know the exact number of people who have the condition.
Organs Affected by Sarcoidosis
Sarcoidosis can occur in almost any part of your body, although it usually affects some organs more than others. It usually starts in one of two places:
- Lungs
- Lymph nodes, especially the lymph nodes in your chest cavity.
It also often affects the:
Less often, sarcoidosis affects the:
- Spleen
- Brain
- Nerves
- Heart
- Tear glands
- Salivary glands
- Bones and joints.
In rare cases, it affects other organs, including the:
- Thyroid gland
- Breasts
- Kidneys
- Reproductive organs.
Sarcoidosis almost always occurs in more than one organ at a time.
Sarcoidosis has an active and a nonactive phase:
- In the active phase, the granulomas form and grow. In this phase, symptoms can develop, and scar tissue can form in the organs where the granulomas occur.
- In the nonactive phase of sarcoidosis, the inflammation goes down, and the granulomas stay the same size or shrink. The scars may remain and cause symptoms.
The cause of sarcoidosis is unknown. Doctors think that it may result when your immune system overreacts to some kind of foreign substance. Scientists also think that your immune system acts this way only if you have inherited a certain combination of genes.
There is no known way to prevent sarcoidosis.
Many people with sarcoidosis have no symptoms. Symptoms usually depend on which organs the disease affects. Symptoms in the lungs and lymph nodes include:
- Shortness of breath
- Dry cough
- Wheezing
- Enlarged and sometimes tender lymph nodes.
Changes in sarcoidosis usually occur slowly (for example, over months). Sarcoidosis does not usually cause sudden illness. However, some symptoms may occur suddenly. They include:
- Disturbed heart rhythms
- Arthritis in the ankles
- Eye problems.
In some serious cases in which vital organs are affected, sarcoidosis can result in death.
Your doctor can determine if you have sarcoidosis by taking a detailed medical history and conducting a physical exam and several tests. The tests used in diagnosing this condition may include:
- A chest x-ray
- Blood and lung function tests
- An electrocardiogram
- Magnetic resonance scan (MRI)
- Scans using radioactive elements.
In order to make a sarcoidosis diagnosis, your doctor may also insert a long, narrow, flexible tube with a light on the end, called a bronchoscope, through your nose or mouth into your lungs to look at your airways and to obtain samples of cells and other tissues for examination under a microscope. You would most likely have this procedure as an outpatient in a hospital under local anesthesia.
Treatment for Sarcoidosis
Treatment for sarcoidosis depends on your symptoms and how severe they are, whether any of your critical organs (for example, your lungs, eyes, heart, or brain) are affected, and how they are affected.
The main sarcoidosis treatment is
prednisone, a corticosteroid or anti-inflammatory drug. It's usually given for many months, sometimes even for a year or two. When used for a long time at high doses, prednisone can cause serious side effects, including:
It can also affect the body's production of certain hormones.
Other drugs may be used to treat sarcoidosis if your condition gets worse while you are taking prednisone or if you can't tolerate its side effects. Most of these other drugs are immune system suppressants that can cause serious side effects.
Local therapy is the safest way to treat sarcoidosis. Localized drugs include eye drops, inhaled drugs for your lungs, and skin creams.
Regular follow-up care for sarcoidosis is important, even if you aren't taking medication, since new symptoms can occur at any time, and your condition can get worse slowly without you noticing it.
The course of sarcoidosis varies greatly among people:
- In many people, sarcoidosis is mild. The inflammation that causes the granulomas may get better on its own. The granulomas may stop growing or shrink. Symptoms may go away within a few years.
- In some people, the inflammation remains but doesn't get worse. These people may also have symptoms or flare-ups and need treatment every now and then.
- In other people, sarcoidosis slowly gets worse over the years and can cause permanent organ damage. Although treatment can help, sarcoidosis may leave scar tissue in the lungs, skin, eyes, or other organs. The scar tissue can affect how the organs work. Treatment usually does not affect scar tissue.
If you have sarcoidosis, you should take steps to stay healthy. For example:
- Don't smoke
- Avoid substances like dusts and chemicals that can harm your lungs
- Follow a healthy eating plan, and be as active as you can without straining yourself
- Join a patient support group for help in learning to live with sarcoidosis.
Your regular doctor may be able to diagnose and treat your sarcoidosis, but diagnosis and treatment by a doctor who specializes in sarcoidosis is recommended. These specialists are often found at major medical centers. Even if you want to be treated mainly by your regular doctor, you should see a doctor who specializes in the organs that are affected by your sarcoidosis at least once. He or she can work with your regular doctor to make sure you have a good treatment plan.
If you are thinking about getting pregnant, you should talk to your doctor about how sarcoidosis may affect your pregnancy. Pregnancy usually doesn't affect the course of sarcoidosis, but it may flare up after delivery.
You can continue taking corticosteroids during your pregnancy. None of the other drugs that are used to treat sarcoidosis are recommended for use during pregnancy.
If you are pregnant, you should have good
prenatal care and sarcoidosis checkups, both during and after pregnancy.
Sarcoidosis was identified in the late 1860s. Since then, scientists have developed better tests to diagnose sarcoidosis and have made advances in treating it.
Research continues to be done to improve the diagnosis and treatment of the disease. Scientists are studying drugs that are used for other conditions to see if they can help people who have sarcoidosis. These drugs include several strong immune system suppressants (immunosuppressives),
tetracycline antibiotics, and thalidomide.
Scientists also are conducting research to find out more about what causes sarcoidosis, why it seems to act differently in people of different races, and what genes are involved.
The following points are important to keep in mind regarding sarcoidosis:
- Sarcoidosis involves inflammation that produces tiny lumps of cells called granulomas in various organs in your body. These granulomas can grow and clump together, making several large and small groups of lumps. If many granulomas form in an organ, they may affect how the organ works and can cause symptoms.
- Sarcoidosis can occur in almost any part of your body, although it usually starts in either your lungs or lymph nodes. It also often affects your skin, eyes, and liver. Sarcoidosis can also affect your spleen, brain, nerves, and heart.
- The course of sarcoidosis varies greatly among people. Sometimes, it's mild, and the symptoms may go away within a few years, even without treatment. But sometimes it slowly gets worse over the years and can cause permanent organ damage.
- Sarcoidosis affects men and women of all ages and races worldwide. It occurs mostly in people ages 20 to 40; African Americans, especially women; and people of Asian, German, Irish, Puerto Rican, and Scandinavian descent.
