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Thursday, July 20, 2017
Reoccurring of Neurosarcoidosis
I was diagonized with neurosarcoidosis back in 1996 and under went brain surgery to remove one tumor. I had 6 tumors but only one was operatable and was put on decadone (a very stong steriod) for 3 years to shrink the tumors. The sarcoidosis was put into dormency until this year. I started with eythema nodosums on my shins again and just started with the headaches in the area of where the tumors where. My question to you is, what would cause the sarcoidosis to come out of dormancy and what should I do now. I really do not want to go on the steriods again. I had the sarcoidosis really bad back then, I had it my eyes, skin, nervous system, brain,lung. I am really scared that it may be reappearing again and do not know what to do now. Any suggestions?
Steroids are one of several ways to treat neurosarcoidosis. I would recommend that you meet with your doctors to discuss other options.
For instance, the "anti-tumor necrosis factor" class of drugs can be effective and does not have the same side-effects as decadron and related drugs (corticosteroids). There are other types of drugs that can also be considered depending on your specific situation.
It is not possible to make a firm recommendation in an online forum such as this.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University