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Sunday, May 28, 2017
I HAVE NEUROSARCOIDOSIS FOR ONE AND A HALF YEARS IM ON THE LAST RESORT CYTOXEN.MY DOCTOR IN BALTIMORE SAYS ITS HELPING MY SPINE,BUT I FELL NO CHANGE I FEEL THINGS ARE GETTING WORSE.HOW DO I TELL MY DOCTOR WHEN HE IS 3 HOURS AWAY AND MY PRIMARY AND CHEMO DOCTOR HAS NO CLUE.I KNOW THERE IS NO MAGIC PILL,I JUST WANT SOME OF MY LIFE BACK.
If you are not responding to cytoxan and prednisone, there are other options. In fact, the group at Johns Hopkins is among those who are studying the effects of anti-TNF treatments. TNF (tumor necrosis factor) is a potent promoter of inflammation, and drugs that block the effects of TNF are showing promise for the treatment of neurosarcoidosis. It makes sense to go back to the doctors in Baltimore to let them know that the cytoxan is not working, at least from your perspective. They can discuss the options with you.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University