What is Sarcoidosis?

Lung disease is the number three killer in America, responsible for one in six deaths. Lung disease and other breathing problems constitute one of the leading causes of death in babies younger than one year old. Today, more than 35 million Americans are living with chronic lung disease such as asthma, and chronic obstructive pulmonary disease (COPD) otherwise known as emphysema and chronic bronchitis. This site includes information on COPD, influenza, pneumonia, and sarcoidosis related lung disease among others. 
                                      About Sarcoidosis

Sarcoidosis, pronounced SAR-COY-DOE-SIS, is a devastating, potentially fatal inflammatory disease that can appear in almost any organ in the body. Although the lungs are affected in more than 90% of patients, the disease often attacks the heart, eyes, central nervous system, liver and kidneys.

Sarcoidosis is an inflammatory and a multi-system disease that attacks the body's organs and systems. Sarcoidosis is a disease that occurs when areas of inflammation develop in different organs of the body. Very small clusters of inflammation or white cells, called granulomas, are seen in the organs affected with sarcoidosis. They may occur in the lungs, lymph nodes, eyes, skin or any area of the body. These granulomas may clear up on their own or cause permanent scarring.


The white blood cells fight each other and they form into clusters called granulomas. These granulomas can cause permanent scarring. This disease attacks the lungs in 95% of the cases. But it does attack other organs too.  

Once thought rare, sarcoidosis is now known to be common and affects people worldwide. The cause remains unknown and THERE IS NO CURE.

Early diagnosis and treatment of sarcoidosis can help relieve symptoms, reduce inflammation and stop or minimize organ damage. “

Doctors have misdiagnosed this disease as asthma, bronchitis, tuberculosis, and COPD and other diseases because there is not a lot known about it.  Most people and doctors too don't even know what this disease is. They are not sure what causes it and they don't have a cure as of yet. Prednisone is the drug of choice to help slow the progression of the disease.  

                                                 What causes  Sarcoidosis? 
No one knows yet what causes Sarcoidosis. Some physicians believe that Sarcoidosis may result from a respiratory infection caused by a virus. Others feel that exposure to toxins or allergens in the environment are to blame. Most scientists do agree that Sarcoidosis is a disorder of the immune system, with some people vulnerable to getting the disease while the majority of the population remains healthy and unaffected. 

The fact that a person is more likely to develop the disease if someone in his or her close family has the disease strongly suggests that genetics plays a role. Researchers have not discovered the genes for sarcoidosis yet, but it seems likely that more than one gene is involved.

Who Has Sarcoidosis?  Once thought rare, sarcoidosis is now known to be common and affects people worldwide.  The disease can affect people of any age, race and gender.  However, it is most common among adults between the ages of 20 and 40 and in certain ethnic groups.

·         In the United States, it is most common in African Americans and people of European – particularly Scandinavian – descent.

·         Among African Americans, the most affected U.S. group, the estimated lifetime risk of developing sarcoidosis might be as high as 2 percent.

·         Most studies suggest a higher disease rate for women.

Disease severity can vary by race or ethnicity.

·         In the United States, sarcoidosis frequently occurs more often and more severely among African Americans than among Caucasians.

·         Appearance of the disease outside of the lung is common in certain populations, for example: the eyes (chronic uveitis) in African Americans, painful skin lumps in Northern Europeans and the heart and eyes in Japanese. 


                                                     WHAT IS THE TYPICAL COURSE OF SARCOIDOSIS?

In most cases of Sarcoidosis with little or no symptoms, the disease disappears of its own accord, and no treatment is necessary.

If the lung Sarcoidosis is severe, or if the disease spreads to the skin or other organs, then there is a greater chance that the Sarcoidosis will become chronic and resistant to treatment.

The most serious outcome of chronic Sarcoidosis is the development of pulmonary fibrosis, where the lung’s tissues become scarred and weakened. The end result is poorly functioning lungs, shortness of breath and severe disability.


  • Lungs 
    Inflammation in the lungs can cause shortness of breath, wheezing or cough (often a dry cough). In some people, the symptoms go away; in others there can be permanent scarring and persistent symptoms.
  • Lymph Nodes
    Enlargement of various lymph nodes can occur, especially the lymph nodes in the chest.
  • Eye
    Inflammation of the eye can lead to watering, redness, dry eyes and sensitivity to light. Blurred vision can also occur. In some cases there can be eye involvement with no obvious visual problems; therefore, it is important that the person be checked regularly by an eye doctor to determine if there is eye involvement.
  • Skin
    Skin involvement may appear as raised, pink or purplish areas or as painful nodules under the skin. These deeper nodules are often found on the legs and may be seen with arthritis from sarcoidosis.
  • Bone
    Nodules in the bone can be painful and can cause pain in the hands and feet.
  • Spleen and Liver
    Enlargement of the spleen or liver that a doctor can feel during a physical exam can occur.
  • Heart
    Heart involvement occurs in a small percentage of people and can be difficult to diagnose. This can include heart rhythm abnormalities and can affect the ability of the heart muscle to pump blood.
  • Brain and Nervous System
    Granulomas can develop in the brain and the nerves and cause many symptoms, including loss of sensation, loss of muscle strength, headaches, and dizziness. Only about one in 100 people with sarcoidosis are affected.
  • Salivary Gland
    The salivary gland can also be involved with granulomas. People with salivary involvement of their sarcoidosis may have trouble with a dry mouth.


Who gets sarcoidosis?

Sarcoidosis occurs more often in Caucasians of European descent and in African-Americans, mainly Black females. About 10 to 40 out of every 100,000 people develop sarcoidosis. It is most common in young people between the ages of 20 and 40. Sarcoidosis is not contagious.

What are the signs and symptoms of sarcoidosis?

People with sarcoidosis may have no symptoms, only vague symptoms of a general nature such as weight loss and fever, or symptoms associated with a specific organ, usually the lungs. More than one organ can be involved. Up to half of people with sarcoidosis have no symptoms when the illness is diagnosed. Thus, the diagnosis can be difficult to make. Signs and symptoms associated with specific organ involvement can include the following:


Management of Sarcoidosis

The first step in diagnosing sarcoidosis is a good evaluation. The inflamed microscopic granulomas seen in the affected organ with sarcoidosis are similar to those in other diseases such as tuberculosis, fungal diseases, berylliosis, and farmer's lung. Because of this, a careful evaluation is necessary to make a diagnosis. Only after the known causes of granulomas have been "ruled out" is the diagnosis of sarcoidosis made.

An evaluation to detect sarcoidosis should include the following:

  • Thorough Medical Examination
    A thorough medical examination can help "rule out" other diseases that may be similar to sarcoidosis.
  • Chest X-Ray
    Doctors look at the X-ray for evidence of enlarged lymph nodes and small round spots in the lung caused by the clusters of inflammation. "Staging" can help the doctor determine the degree of lung involvement in sarcoidosis. A scale of 0-IV (zero to four) is commonly used with IV having the highest amount of lung involvement.
  • Pulmonary Function Tests
    Standard breathing tests give an indication of the severity of lung disease. There is nothing unique about sarcoidosis on these tests, so they do not substitute for other, more specific tests. Pulmonary function tests can show obstruction of air flow out of the lungs, restriction of the lung's ability to take in air, and a decrease in the transport of oxygen from the lung into the blood stream. The most important types of breathing tests in sarcoidosis are spirometry, lung volumes, and diffusing capacity. In some cases, measurement of blood oxygen levels during an exercise test should also be done.
  • Tissue biopsy
    A microscopic examination of tissue samples from the lungs or other affected organs is needed to be absolutely sure of the diagnosis. A bronchoscopy can obtain this tissue. A bronchoscopy is an outpatient procedure in which the doctor places a narrow tube through the nose and into the airways. Sometimes the diagnosis is made by obtaining tissue samples from the skin, liver, or enlarged lymph nodes.
  • Bronchoalveolar Lavage
    When a bronchoscopy is done, a small part of lung can be washed (lavaged) in order to obtain some cells of the immune system from the lung. By counting the types of cells in lavage fluid, it is possible to get an estimate of how inflamed the lungs are, and whether the type of inflammation is characteristic of sarcoidosis. This procedure is routinely used at a number of medical centers (including National Jewish Health), and may also provide a great deal of information for research into this disorder.
  • Eye Examination
    A slit lamp examination by an eye doctor (ophthalmologist) is an important part of an eye examination to detect inflammation.
  • S.A.C.E. (Serum Angiotensin Converting Enzyme Level)
    S.A.C.E. is a blood test. If the level of this blood test is high, it can indicate the presence of sarcoidosis. It can sometimes be used to monitor if sarcoidosis is improving or worsening. Unfortunately, other diseases can cause increased S.A.C.E. blood levels also, so this test cannot be used alone to make the diagnosis.
  • CT Scan
    A CT Scan is a detailed type of X-ray. The CT scan may make it possible to see lymph nodes and scars in the lung when regular chest X-rays sometimes cannot.
  • Gallium Scan
    The Gallium scan is a type of X-ray scan. A small amount of radioactive material is injected into a person's blood, which travels to areas of the body that are inflamed. An X-ray camera scans the body to see where the radioactive material has collected. Although not needed in all cases, gallium scanning can help show sarcoidosis in many organs, including the lungs, salivary glands, bone, spleen, and liver.
  • Calcium Levels in the Blood and Urine
    People with sarcoidosis can have sensitivity to vitamin D. This results in too much calcium being absorbed through the intestines. This can cause a high level of calcium in the blood and urine. Exposure to the sun can further stimulate this process. It may be necessary to collect a urine sample for 24 hours to measure the calcium level as well as collect a blood sample for calcium. There are rarely symptoms seen with high levels of calcium in the blood. If symptoms are present they may include vague bone pain and frequent urination.
  • Kveim Test
    The Kveim test is a test in which an extract of sarcoid affected tissue is injected under the skin. It is not used very often in a sarcoidosis evaluation.

                                         What is the Treatment of Sarcoidosis?

Physicians cannot cure Sarcoidosis outright but they can treat the symptoms of the disease.

Drugs called corticosteroids are the most common treatment used in fighting Sarcoidosis. However, corticosteroid treatment has multiple side effects and may fail to adequately alter the disease course.

Other drugs that have also been used with varying success to treat Sarcoidosis include methotrexate, cyclophosphamide, retinoids, hydroxychloroquine, and thalidomide. These drugs also have side effects.

New and more effective treatments need to be developed through medical research to control, or perhaps even cure Sarcoidosis.

Not everyone with sarcoidosis will need treatment. Up to one half of the people diagnosed with sarcoidosis improve without treatment. Those who do not improve are often placed on medicine to reduce inflammation. Many people will recover, but some will get worse despite treatment.

The goals of treatment are to:

  • Maintain good lung function
  • Lessen symptoms
  • Prevent organ damage

 What Medicines Are Used to Treat Sarcoidosis?

  • Corticosteroids
    Corticosteroids, which work to reduce inflammation, are the main treatment. Generally, prednisone (a tablet) is given daily or every other day, depending on the symptoms. Prednisone can decrease symptoms, improve lung function, decrease S.A.C.E. levels, reduce granuloma formation, and possibly, lessen scarring of the lungs. Prednisone can be associated with a number of side effects. Because of this, people on corticosteroids should be carefully monitored by a doctor. The potential benefits from treatment usually outweigh the risks from the medication side effects.
  • Methotrexate
    When a person with sarcoidosis cannot take corticosteroids, there are other medicines which are used. Methotrexate is an anti-inflammatory medicine and is often used as a second-line medicine. It may be used with corticosteroids or after stopping corticosteroids.

   Are There Other Medicines and Treatments?

  • Other Medicines
    Other medicines are used if cortiosteroids and methotrexate are not effective. These other medicines are not used often, since their effect on sarcoidosis is not as well understood. They also can have side effects. These medicines include Azathioprin, Hydroxychloroquine, Chlorambucil, Cyclophosphamide and Pentoxifylline.
  • Oxygen Therapy
    Oxygen therapy may be an important part of a treatment plan for people with severe sarcoidosis. It can help reduce heart and lung side effects of low oxygen levels.
  • Pulmonary Rehab
    For people who develop chronic, progressive sarcoidosis, pulmonary rehabilitation may also be helpful.

What Do We Recommend?

One important thing a person can do to improve the outcome of sarcoidosis is to see a doctor when the symptoms first appear. This can help prevent damage to the lungs, eyes, heart, and other organs. Also, people with sarcoidosis should continue to follow up with their doctor after they have been diagnosed to monitor if the disease is progressing.

People with sarcoidosis can, like others, develop lung disease from smoking. Therefore, it is also important to avoid smoking.





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