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Wednesday, May 24, 2017
Treatment of neuro/pulmonary sarcoidosis
My symptoms began March `05. I am now 50yr, AA female. Blinding headaches,paralyses of my face,scalp so sensitive I couldn`t comb my hair for 1yr, severe back pain, losing use of my legs for short periods,incontinence, shortness of breath, weight gain, depression, fatigue,poor concentration, numbness on right side, dry cough, etc. I`ve had prednisone with a bad reaction and several other drugs. I currently take mycophenolate and gabapentin but still ache, my worst symptoms,constant pain up/down my spine,lost of balance, trouble walking w/o assistance. Any suggestion for different meds or how to get my doctors to hear me/explain to me how to get some kind of relief?????
It is unclear from your communication if you were actually diagnosed with neurosarcoidosis. Assuming that the diagnosis was secured (a biopsy of affected tissue is usually required), and your symptoms relate to sarcoidosis, it is not surprising that the disease has resisted the usual treatments.
There have been anecdotal reports of good results using mycophenolate. However, other treatments should be considered if this drug does not control disease progression. Other treatment options include anti-tumor necrosis factor drugs (e.g., infliximab) or cyclophosphamide. The cost of these medications is relatively high. Thus, the insurance companies may require some information from your doctors before they will cover the costs of these treatments.
There are a number of potential side effects of these drugs. Careful monitoring for adverse side effects is necessary and your doctors have to be experienced in their use.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University