DEAR DR. GOTT: My wife was diagnosed with multi-organ sarcoidosis. It has caused a third-degree heart block. It has been identified in her lungs, brain, liver, lymph nodes and has caused severe skin lesions. Steroids have helped but she was taken off them because of rapid bone loss that will result in a hip replacement in the future. Her current panel of doctors seems to be stumped as to what to do next. Do we have any options, or is there any new treatment that maybe has not made its way to our area yet?
DEAR READER: Sarcoidosis is caused by the development and growth of clusters of inflammatory cells in various areas of the body. Most commonly, the lesions appear in the lungs, lymph nodes, eyes and skin.
It is not known what causes the condition, but it is thought to result from an abnormal immune response. What triggers the response is not known, but some physicians believe it is likely something inhaled because most patients have lung symptoms.
Symptoms, severity and duration vary from person to person; however, for most, it goes away on its own. For some, it may last indefinitely. Symptoms depend on what area is affected. Many people do not have symptoms. Some may have signs that develop gradually and last for several years, while others have symptoms that appear and disappear quickly. Based on your brief note, I believe that your wife has a severe case that has been causing problems for a while. You do not mention when she was diagnosed and how long she was taking medication.
Treatment depends on severity and what organs are affected. Minor symptoms may only require close monitoring. For bothersome symptoms or if vital organs are at risk, anti-inflammatory medication may be prescribed. Corticosteroids are most commonly used and are the best first-line approach. If they do not provide adequate results or cannot be tolerated, anti-rejection medications, anti-malarial drugs and TNF-alpha inhibitors may be considered. Anti-rejection medications suppress the immune system and reduce inflammation. Anti-malarial drugs are most beneficial for those with skin symptoms and nervous-system involvement. Tumor necrosis factor (TNF)-alpha inhibitors are most commonly used to treat rheumatoid arthritis, but studies have shown it may be helpful in treating sarcoidosis.
A final and last resort option is surgical organ transplant. This is only considered for individuals who have had severe liver or lung damage owing to sarcoidosis.
You don’t mention what type of physicians your wife is currently seeing. Because she has many organs involved, she may need to be under the care of several specialists who are familiar with sarcoidosis, one of whom might be a pulmonologist (lung specialist). Such specialists are most likely to be familiar with sarcoidosis because it is primarily a lung disorder. He or she can then recommend other physicians based on which organs are affected. There will likely be a cardiologist (heart specialist), neurologist (brain and nerve specialist), dermatologist (skin specialist) and/or a hepatologist (liver specialist).
Both you and your wife will benefit from understanding her condition better. You can learn more from the Mayo Clinic (www.MayoClinic.com/health/sarcoidosis/DS00251) or the Foundation for Sarcoidosis Research (www.StopSarcoidosis.org).
To provide related information, I am sending you a copy of my Health Report “Medical Specialists.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order payable to Newsletter and mailed to Newsletter, P.O. Box 167, Wickliffe, OH 44092. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.
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