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Sarcoidosis

Confusion Over Pulmonary Sarcoidosis

02/09/2009

Question:

My mother was just diagnosed with Sarcoidosis. Her salivary glands (both sides) were inflamed which caused her to go to the doctor. She looked as if she had mumps. Her eyes were really red and have since gone back to normal. Her glands are not as inflamed as before, one side may be back to normal. She did have a dry persistent cough that seems to be better. She has had a fine needle aspirate and then a biopsy of a salivary gland, MRI, CT scans, pulmonary function tests, and tons of blood work. She does have lymph nodes around her wind pipe where her lungs branch which are inflamed. But nothing is showing up in her lungs and her PFT’s are normal. We have had a few doctors tell us that she does not need a biopsy of these lymph nodes (around her lungs) at this time because it is most likely the sarcoidosis. We did have a surgeon tell us that it needs to be done to know for sure. We just found out the diagnosis yesterday and are trying to decide whom we want follow her. In your opinion should we have the pulmonary physician we have seen follow her or go to Columbus Ohio to have someone whom specializes in the disease follow her?? Should we have a lymph node biopsy done on the lymph nodes around her windpipe or wait till they start treatment and see if they go down? Lots of questions we need answered. I would greatly appreciate any help you can give me. My mom is only 54 and beside this most recent episode she in good health.

Answer:

The clinical features that you describe are consistent with sarcoidosis. However, your surgeon is correct in that a biopsy is needed to absolutely confirm the diagnosis.

In some cases, the diagnosis can even be made by the opthalmologist or by biopsying tissue that is easy to access, such as the enlarged salivary glands or enlarged lymph nodes outside of the chest. In other cases, a biopsy of the lymph nodes in the chest can be performed using a "scope" that is inserted into the airways; thereby avoiding the need for surgery. Some patients elect not to have any of these procedures performed. However, there is some risk that sarcoidosis is not the cause.

Assuming that your mother has sarcoidosis, it is unclear to me how much treatment would be necessary. From the information provided, she will likely require treatment for her eyes (sometimes medicated eyedrops are sufficient). It is unclear if she has any serious disease affecting other vital organs.

While the lungs are commonly involved, other vital organs may be affected. Engaging a specialist familiar with sarcoidosis is generally a good idea. However, your local pulmonologist may be willing to co-manage your mother's disease in collaboration with the sarcoidosis specialist. This approach is especially effective when the disease is not too serious. Hopefully, your mother falls into this category.

For more information:

Go to the Sarcoidosis health topic, where you can:

Response by:

Elliott D Crouser, MD Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University