Sarcoidosis treatment: Watch and wait

September 25th, 2010

DEAR DR. GOTT: I was diagnosed with sarcoidosis after many bone-marrow tests, blood work, X-rays, pet scans and finally by removal of my spleen, which was greatly enlarged and filled with nodules. I requested a second opinion on the diagnosis, and the second doctor agreed with the first. It is inactive but in my lungs, and he tells me the normal treatment is 60 milligrams of prednisone daily for up to two years to reduce the scarring and inflammation. But, with that high dose, it will cause other major problems.

I am white, in my late 50s and have multiple other problems — asthma, fibromyalgia, high blood pressure, rosacea, borderline high cholesterol, osteoarthritis and low oxygen at night that isn’t sleep apnea. I’ve had a detatched retina that is now a buckle and a cyst on the retina in my other eye. Thus, my doctor chooses to watch rather than treat at this stage.

Do you have other information that I might find useful?

DEAR READER: Sarcoidosis is an inflammatory disorder that can affect any organ in the body. It is marked by small, round bumps in the tissue around the affected organs to include the lungs, spleen, mucus membranes, salivary glands, lymph nodes and skin. Less common are the eyes and liver that can also be affected. The lesions can disappear after a period of months or years but can lead to widespread swelling and fibrosis.

Symptoms may include a persistent cough, weight loss, arthritic pain in the joints, shortness of breath and fatigue.

While the exact cause of the disease is unknown, it appears linked to the immune system overreacting to an unknown pathogen, toxin or drug that enters the body through inhaling. Genetic factors also play a role, as do race and age.

Our immune systems are structured to fight bacteria and viruses that enter the body, allowing us to remain healthy. With sarcoidosis patients, the white blood cells respond too strongly to bacteria and viruses, triggering small but specific areas of inflammation known as granulomas. With progression of the disease, those granulomas can damage healthy tissue and cause scarring.

Diagnosis can be made by visual examination of the lesions, enlarged lymph nodes and redness of the eyes. A chest X-ray will be abnormal, laboratory testing will likely reveal higher-than-normal blood-calcium levels, and pulmonary-function testing will reveal lung changes. Beyond that, there are numerous other tests available for confirmation, if necessary.

Some people do not need any treatment at all. When symptoms are present, treatment will vary depending on which organs are affected. Anti-inflammatory drugs known as corticosteroids are commonly prescribed. When a patient cannot tolerate steroid treatment, other options, such as methotrexate, azathioprine or hydroxychloroquine, may help.

While you may never recover completely, there are steps you can take to lessen symptoms. If your physician prescribes medication, be sure to take it according to the recommendations. Abstain completely from smoking, and avoid as many other irritants as possible, such as air pollution and dust. Last but not least, consider joining a support group. Your local chapter of the American Lung Association can assist you in finding a chapter nearby.

To provide related information, I am sending you a copy of my Health Report “Pulmonary Disease.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order made payable to Newsletter. Forward it to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.