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Monday, September 1, 2014
I am a physician who was diagnosed with bone sarcoidosis last week. the lesions are confined to the bone marrow of my hands, feet, and now left leg. The sarcoid experts in southern California are pulmonary experts who have informed me that they do not treat bone sarcoid. Do you know of any experts that treat specifically bone sarcoid any where in this country?
I am not aware of a sarcoidosis expert who is focused on bone manifestations. My approach has been to assemble a team of collaborators who can help me deliver care to sarcoidosis patients. In this regard, the most effective treatment for bone disease (or any other manifestation!) has not been rigorously determined. I am attaching a review of this topic that might be helpful to you. As you can see, there is no consensus on how to treat; however, hydroxychloriquine makes intuitive sense based upon its mechanism of action, and it has relatively few side effects. Conventional therapy with corticosteroids and perhaps a steroid-sparing agent (e.g., methotrexate) is a reasonable next step.
In some communities it is the rheumatologist who is most experienced in the management of sarcoidosis, whereas pulmonologists or hematologists manage the disease in other settings. I would look for a team of specialists who are collaborating to manage the diverse manifestations of disease. It is unlikely that one "expert" can manage all disease manifestations without the help of other experienced physicians, including cardiologists, radiologists, hematologists, neurologists, endocrinologists, etc.
I hope this information is helpful.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University