enlarged lymph nodes

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my 29 son was diagnosed with sarcoidosis in oct 2002 by having parotitis, iritis,vertigo ,tinnitis, bilateral adneopathy and a high ace. the doctor thought watchful waiting was appropriate. the doctor waited a year and at first he thought the nodes had grown but a cat scan showed they were the same with a small cluster of granules in his lung. the doctor now is going to wait another year.the doctor said if it were his son he would not put him on predisone.I was surprised he did not order any blood work.I think my son is the only patient he has had with sarcoidosis. my question is should my son be on some sort of treatment? i just do not want to miss the boat. thank you very much.

[National Jewish]

Sarcoidosis is a disease that causes small clusters of inflammation, called granulomas.  The granulomas can occur in any area of the body, but are most common in the lungs, lymph nodes, eyes, and skin.  When the inflammation occurs in the lungs it may show up as cloudy areas on the CT scan.

Inflammation in the lungs can cause shortness of breath, wheezing or cough, often a dry cough.  In some people, the symptoms go away completely with or without treatment.  In other people the inflammation leads to permanent scarring or fibrosis.  There is no way to predict the chances of fibrosis for a particular individual.  The cause of sarcoidosis is unknown.

The term “level” or “stage” refers to the extent of the disease.  Generally this is based upon the chest x-ray.  There are 5 stages of sarcoidosis.  Stage 0 sarcoidosis is when the chest x-ray looks normal.

When sarcoidosis affects the lungs, it can cause enlarged lymph nodes in the chest.  Adenopathy is another term for enlarged lymph nodes.  In fact, enlargement of the hilar lymph nodes is the most common finding when sarcoidosis effects the lungs.  The effect on the lungs is usually watched over time by checking pulmonary function tests, not blood work.  Hilar adenopathy is considered stage 1 sarcoidosis.  The lung hilar is the area at the center of the lungs near the heart.  Hilar adenopathy can occur by itself without any other health problem.  When this happens it usually causes no symptoms and is of no consequence.

Generally when sarcoidosis effects the heart, lungs, brain, kidney, or eyes it is treated.  To really get the best answer to your question about your son being on some sort of treatment for sarcoidosis you might consider another opinion from a pulmonologist.  This is the type of specialist that treats sarcoidosis, especially when it affects the lungs.  A pulmonologist at a university medical center is most likely to have the greatest experience in treating people with sarcoidosis.  Please read our Sarcoidosis MedFact at http://www.nationaljewish.org/medfacts/sarcoid.html for more detailed information.