COL Prognosis good for early stage sarcoidosis
By Dr. Allen Douma
Tribune Media Services
Q: I am 27 years old and was diagnosed with sarcoidosis in December. I have been on prednisone since then and expect to be on it for another six months.
I've been going to doctors and found that it is really not taken very seriously. I started to do my own research and found that this disease seems to be very common and very serious. Doctors have a hard time diagnosing this disease because symptoms vary and it is usually found by accident. Do you have any information about this disease to help people like me, who cannot seem to find any help? -- J.N.
A: Sarcoidosis is indeed one of medicine's more perplexing diseases. It is one of a group of lung diseases characterized by inflammation and development of fibrous tissue.
The disorder is most common among Northern Europeans and African-Americans and occurs in 20- to 40-year-olds. A recent study of an urban population in the United States found that African-American women age 30 to 39 are most at risk.
Sarcoidosis is a chronic (long-term) and systemic (throughout the body) disease in which inflammatory cells, fibrous tissue and blood vessels come together to form masses called granulomas in many organs of the body.
Almost everyone with sarcoidosis will develop these granulomas in the lungs and about 70 percent will also have granulomas in the liver. Granulomas are also commonly seen in the lymph nodes, eyes and skin. Other organs that are sometimes affected include the spleen, bones, joints, muscle, heart and nervous system.
Sometimes the granulomas eventually disappear or become scar tissue, which can affect the functioning of the involved organ system. In the case of the lung involvement, the scar tissue can result in decreased lung function, making it difficult to breathe.
As you rightly point out, many people with sarcoidosis have no symptoms and the disease is often found accidentally, when an X-ray is taken for another purpose. When symptoms do show up, they vary greatly depending on the location and extent of granuloma formation.
Sarcoidosis also can affect the body as a whole, with fatigue being the major symptom for some people. Other complaints include general discomfort and fever.
The cause is unknown, but it's thought to result from a bacterial or viral infection combined with an abnormal response of the immune system. Family members of someone with sarcoidosis have an increased risk of getting it because of unknown inherited traits.
Blood tests and X-rays can be helpful in diagnosis of sarcoidosis, but confirmation should come from examination of biopsied tissue for granulomas.
Although many people without symptoms don't need treatment, for some it can be a devastating illness. The front line of treatment is oral corticosteroid therapy, which typically needs to be taken for years.
Taking steroids over a long time often causes negative side effects, but the benefits for many people greatly outweigh them. Close monitoring is essential to continually adjust for an optimum therapeutic dose and to keep an eye on side effects.
The outlook is good for those whose sarcoidosis is in the early stages of the disease, but 20 percent of those with lung involvement will have irreversible lung impairment. While it can be fatal in rare instances, sarcoidosis often goes into remission on its own.
Many local chapters of the American Lung Association host support groups for sarcoidosis patients. The address and telephone number of the chapter nearest you should be in the local telephone directory. Or you can contact the association's national headquarters at the American Lung Association, 1740 Broadway, New York, NY 10019-4374, (212) 315-8700, www.lungusa.org.
Dr. Allen J. Douma writes a daily column on a variety of medical and health issues.