Susan 2016 USA

My SD symptoms started in 2005 but I was not diagnosed until 2006. I took conventional rheumatology meds for almost a year but my symptom progression continued very rapidly. I could not: open a water bottle, dress myself independently, walk downstairs with alternating feet, get up off the floor in a normal manner, stand for more than 20 min.
Trying AP was the best decision I ever made – it saved my life. Within 2-3 months, I could reach the top shelf of the kitchen cabinet again. Within 6 months, I knew I was definitely better. Over time, my skin softened and I could pick up the skin on the backs of my hands again.
Today, I am so functional that I can do things that I never thought I’d do again. I can go into a pool on a hot summer’s day briefly despite my secondary Raynaud’s. I can wear moderate high heels again and I can stand for several hours at a time. I can open containers easily and even do light sewing.
I am on a maintenance dose of Minocin but I’ve stopped IV clindy’s for several years now. I am so grateful that I have avoided internal organ involvement. I am sure I would be on oxygen right now if not for AP.
I received an e-mail from a woman who has diffuse scleroderma for 3 years. She can barely type, can’t drive anymore or work, and has to sleep in a sitting position because of her reflux. They’ve referred her to hospice, saying she might last until December. She is only 38! That could have been me… docs said my scleroderma was “galloping along” in my chart (before I reached my one year mark). This poor woman read my story on a non-RBF website and asked what I was taking (because this other website would not let me say I was taking an antibiotic). Of course I told her, but I worry that AP won’t work soon enough for her. I am so thankful for Dr. Brown, the RBF, and its dedicated board and volunteers, and for the support of my family and friends.

Return to Stories