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Thursday, June 30, 2016
I was diagnosed with Sarcoidosis aproximately 4 years ago and at the time of diagnosis, i was having EXTREME head pain for about a year before the chest xray. My doctor prescribed prednisone not only for the pain but for the enlarged nodes in my lungs and my ACE levels were high. I`ve had uvitis at that time also. The headaches are back, and non stop like before, im now taking the prednisone again to lighten them. Do you think the headaches are a part of the sarcoidosis like a aura of an exasterbation? My doctor doesnt answer questions. PLS help.---- Despirate for an answer.
Persons with sarcoidosis involving the brain or the membranes lining the brain (referred to as neurosarcoidosis) often present with headaches. As you describe, the headaches can return as the disease reactivates. An MRI of the brain is often helpful for making the diagnosis.
It is not unusual for neurosarcoidosis to require long-term treatment. As such, it is not advisable to rely on prednisone alone to treat the disease. Prednisone has many adverse side-effects when used at higher doses and for long periods of time. For this reason, we often use a "steroid-sparing" drug to reduce the amount of prednisone required to control the disease. You are advised to discuss these other options with your doctor.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University