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Sarcoidosis

Neurosarcoidosis

11/09/2006

Question:

MY HUSBAND WAS DIGNOSED WITH SARCOID 2.5 YEARS AGO. HE WAS DIGNOSED WITH NEUROSARCOIDOSIS TWO YEARS AGO. HE HAS TWO LESIONS IN HIS BRAIN. SINCE THE TIME HE WAS DIGNOSED THEY HAVE INCREASED SLIGHTLY. HE HAS FACIAL NUMBNESS AND SOME VISION PROBLEMS THAT COMES AND GOES. HE HAS MUSCLE SPASMS THAT FOR DEFORM HIS HANDS AND FEET. THEY LAST ONLY A FEW MINUTES. HIS MUSCLE SPASMS IN HIS BACK WILL ARCH HIM RIGHT OUT OF A CHAIR. HE WAS TREATED WITH IMURAN, THEN METHOTREXATE. HE HAS BEEN ON 35-80 MGS OF PREDISONE FOR 2.5 YEARS. HE CAN`T GO DOWN PASSED 35 AND FUNCTION. HE HAS IT IN HIS EYES, SPINAL COLUMN, ARTHITIS, SKIN AND LUNGS. HE HAS INCREASED EYE PRESSURE FROM THE PREDISONE, BONE LOSS, STOMACH PROBLEMS, LOW SUGAR, LOW POTASSIOM LEVELS, HIGH BLOOD PRESSURE AND A FEW MORE THAT I AM PROBABLY MISSING. HE TAKES BLOOD PRESSURE MEDICINE, ANTI-SEIZURE MEDS, SLEEPING PILLS, ENBREL, PREDISONE AND A FEW A CAN`T REMEMBER AT THIS TIME. THEY WOULD LIKE HIM TO START CELLCEPT. HE IS 38 YEARS OLD. WHAT IS YOUR OPINION OF THIS? HE HAS SLOWLY GOTTEN WORSE NO MATTER WHAT MEDS HE HAS BEEN ON. THANK YOU FOR YOUR TIME IN ADVANCE. ALSO WHAT DO YOU THINK ABOUT DEPRESSION MEDS ALSO. HE DOES GET DEPRESSED BUT HE SAYS HE WILL NOT TAKE ANY MEDS FOR IT. HE HAS MAJOR MOOD SWINGS. HE IS STILL WORKING, BUT TAKES EVERYTHING FOR HIM TO DO THAT. IT IS NOT THAT WE DON`T TRUST HIS DOCTORS WHAT WOULD JUST LIKE A FRESH OPINION. HE IS HAVING TROUBLE GETTING OFF WORK FOR ALL HIS APPOINTMENTS.

Answer:

Dear Madam-
 
Sarcoidosis of the central nervous system is very difficult to treat and often requires higher doses of prednisone and other medications to control the disease.  Your husband's experience is not unusual.  It is reasonable to try different treatments.  In some cases the dose of prednisone can be reduced if an alternate effective therapy can be found.  In this way, the side effects of prednisone, which are substantial, are reduced. 
 
Having failed methotrexate, imuran, and cytoxan, it is reasonable to try something else.  There are several options, but in individual cases cellcept has been shown to improve sarcoidosis of the central nervous system in people who failed these other therapies.  If cellcept fails, there are some other options, like thalidomide.  Thalidomide is extremely expensive and is dangerous in some ways, so it is reasonable to try cellcept first.
 
Sincerely,
Elliott Crouser MD
The Ohio State University Medical Center

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Response by:

Elliott D Crouser, MD Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University