Hey, I was wondering what people found effective to manage their sarcoidosis. What prevented flare ups? What minimized the severity of a flare up? Thanks

Flare ups don’t seem to be avoidable. I believe that working out (with controlled exercises) 4 times a week for 30 minutes and remaining mentally active through business- oriented volunteer work for the remainder of weekday time keeps me well (as well as can be when you have sarcoid). To minimize the flare up - for me, I have an underlying "true" infection and this must be treated aggressively with IV anti-biotics (even if the it's location is unknown - use a broad anti-b) and then the sarcoid flare that accompanies this action seems to be easier to manage and seems to get minimized.

I have been on prednisone since prior to my sarcoid diagnosis. I know that all literature states that prednisone is one means of meds that can have a calming effect with sarcoid. I only notice flare ups evrey couple of months. Other than that, I suffer with chronic pain (everything from the neck down), swollen legs and ankles, chronic joint pain. Most of my flare ups are severe when the prednisone dosage drops below either 10 or 15mg. So I unfortunately have been on this medicine for years. I have lost 3/4 hearing in the right ear and haven't gotten it back and lost vision in both eyes. I have been on mexatrexate as well for a couple of yrs. I was previously on embrel but have recently been taken off. I recently started a medicine called Gabapentine.

I have dermatological sarcoids only.  Hi there, I have NOT found topical steroids to be any use.  They seem to make my skin worse.I have had this for 8 years or more and it's getting worse.  I'm willing to try scorched earth methods.  I suspect there is something more than just an autoimmune thing going on, but the biopsy says "sarcoidosis".