A.S. Face 0093: Stephanie Downer-Mellini
I am Stephanie Downer-Mellini, I am 49 years old and have AS, I am HLA 27B positive. I was diagnosed one year ago November 2010. I have had recognizable symptoms of AS since I was about 18 years old starting with painful, chronic TMJ and hip pain and some manageable joint discomfort. During my 20′s and 30′s I suffered from bouts of Iritis and some joint pain here and there and continual hip pain. I always thought it was just me. At 42 years old I had my first major flare up and became incapacitated. I was tested for RA, Lupus and a host of other things, not tested for AS or HLA 27B, one doctor thought it was in my head. The final diagnosis I was told was Reactive Arthritis probably due to an ear ache. I was put on Celebrex and had steroid shots in my ankles. After a year I was better. Then last year it happened again, starting with Iritis, then hip pain, back ache, rib pain and a terrible stiff neck; oh yes and swollen feet, upper thighs, sore knees and fingers. But the things that I really could not bare were the back and neck spasms that hit me every time I moved, like someone was brutally kicking me every time I breathed. It just kept getting worse, more unable to move, eat, shower, I was scared to move, it took me at least 20 minutes to get out of bed and get to the bathroom, I had to psych myself up to make a move and prepare myself mentally for the pain. Never in my life had I experienced anything so violently painful. I was put on a course of steroids and sent to a rheumatologist. I am now on Remicade and Methotrexate, this combination works really well for me. I am of course worried about taking these drugs, but I am happy I can get out of bed each day, I need to. I continue to work, bring up three children and go to the gym, I have a supportive husband. I am worried about my future and what it may hold and the uncertain path of this disease. But I try to stay positive, I have plans, I want to go back to college and do a masters. I want to and will try to lead a normal life.
Cookie, thank you for organizing this site. It is very interesting to read every one’s story.
Ashland, Oregon United States of America From Britain