Q. Could you give me some information about sarcoidosis. What are the options for treatment and prognosis? There seems to be so little written on this disease.
--C.L., Newport News, Va.
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.
Sarcoidosis is a chronic (long-term) and systemic (throughout the body) disease. 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; about 70 percent will also have them in the liver. Granulomas are also commonly seen in the lymph nodes, eyes and skin. Other organs that can sometimes be 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. In the case of the lung involvement, the scar tissue can result in decreased lung function, making it difficult to breathe.
Many people with sarcoidosis have no symptoms; the disease often is found accidentally, when an X-ray is taken for another purpose. When symptoms do show up, they vary greatly depending on the sites 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 autoimmune 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 of a granuloma.
Although many people with sarcoidosis don't need treatment, for some it can be a devastating illness. The front line of treatment is oral corticosteroid therapy, which typically is required for years.
Taking steroids over a long time often causes negative side effects, but the benefits for many people greatly outweigh those side effects. Close monitoring is essential to continually adjust for an optimum therapeutic dose and to keep an eye on side effects.
Sometimes immunosuppressive drugs and cyclosporine are considered when the steroids are no longer effective, but results are mixed.
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. Although it can be fatal in rare instances, sarcoidosis often goes into remission on its own.
Many people with sarcoidosis are finding a great deal of support by participating in online support groups, which include communicating through message boards and chat rooms.
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) at 800-586-4872 or www.lungusa.org.
Update on interstitial cystitis
At least 1 million women in North America have interstitial cystitis. It can be so chronically painful that 50 percent of these women will not be able to work full time.
So in addition to the huge amount of physical pain and suffering, these women lose about $2 billion in wages annually.
New research is looking at the use of the BCG vaccine to prevent pelvic pain and frequent urination. BCG vaccine is a preparation of live, but markedly weakened, tuberculosis organisms that is used as a vaccine to give protection against the harmful, natural form of tuberculosis.
This IC Clinical Trials Group study is funded by the National Institute of Diabetes and Digestive and Kidney Diseases.
Write to Allen Douma in care of the Chicago Tribune Health & Family section, 435 N. Michigan, Chicago, IL 60611; or contact him at DRFamily@aol.com. This column is not intended to take the place of consultation with a health-care provider.