I was diagnosed with Behcet's nearly 7 years ago and have spent most of that time treating flares as they arose, usually with Prednisone or whatever seemed to work for whatever part of my body was most affected. I have been through skin/ mucosal issues, bladder, CNS, joint, eye and other problems that were bothersome, but in Nov. of 2011, I developed ischemic colitis as a result of Behcet's and that was a game-changer. I started taking large doses of Prednisone to help heal my colon, but a month later (while still on 40 mg. Prednisone daily), I had another flare of Colitis that resulted in me spending the last week of 2011 hospitalized.
I realize that with so many major organs being affected, I need to be proactive, but medications- especially long-term ones- scare me. I am relatively young (36), and would really like to know I could regain my quality of life. I would like to talk with others who have used medications in an effort to control, rather than to treat, their Behcet's. What has worked or not worked and why are you where you are now (if you are willing to share).
I feel like I am just starting this leg of my journey. I am now finally down to 20 mg Prednisone/ day (since November, I have been on as much as 80 and at least 40 mg up until I began the most recent taper), I also began taking Imuran, 50 mg/ day, about 6 weeks ago and will receive my second infusion of Remicade tomorrow. The goal is to eliminate the Prednisone and the hope is that Imuran and Remicade will provide remission from all of my Behcet's symptoms long-term. So far, I am MORE exhausted and weaker than before- but where before I might get a dozen or so oral ulcers at once that would last over a week, I might get one that goes away pretty fast; and my eyes might begin to feel like I am getting a flare, but it doesn't last long. I am confused as to what this is... maybe it almost feels like a clearing or it may be a suppression.
SO (thanks already, if you have read my mini-saga!), I would appreciate any input/ advice/ support anyone out there has to offer.
LB