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Tuesday, September 26, 2017
Good afternoon, I was diag. with sarcoidosis in May 2007. Since then I have been taking 25mg Methotrexate and weaning down from 30mg of Prednisone to 10mg. I also take Lyrica and Topamax. I was told the sarc is in my muscles/joints and skin. And it my be in my nervous system and salivary glands. My question is I was diag. with a thigh biopsy that read: Skeletal Muscle, Left Anterior Thigh (Biopsy): Lymphocytic Vasculltis With Multifocal Granulomatous Change. The morphological changes are those of a lymphocytic vasculitis with multifocal granulomatous change. My dr. states with all of my symptoms of fatigue, stiffness, all over body aches, weight loss, mild elevated aldolase & ANA, small lesions on upper thighs and results of granuloma in muscle biopsy that I have this disease. Why is granulomatous a marker for sarcoidosis and could it still be possible to have something else? Oh, I have had chest pain, but chest xrays look good. I have been tested for every lab test you could think of. Although I have not had a PET scan to check for lymphoma. My dr. is waiting to see if my meds will start working before he request any further testing. It`s been four months now and my body still feels inflammed. Any advice you have would be helpful, especially explaining about the muscle biopsy. Thank you for your time.
I appreciate your concerns about the cause of your symptoms. Although sarcoidosis can present in different ways, there are causes of granulomatous inflammation other than sarcoidosis, including infections, foreign bodies (such as glass particles), vasculitis (inflammation of the blood vessels) and other autoimmune diseases. Sarcoidosis is a diagnosis of exclusion, meaning that the doctor must exclude all other likely possibilities before calling it "sarcoidosis". In some cases it takes several months of testing before these other diagnoses can be excluded.
I would encourage you to maintain a dialogue with your doctor. If you remain unsure of your diagnosis or if your treatments are not working well, it is reasonable to seek a second opinion. Any reasonable physician would be OK with this.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University