July of 2007 was my one year anniversary on AP, and also, on being diagnosed with aggressive, diffuse scleroderma. I figured it had started months before I was diagnosed (but didn’t clinically meet the criteria), so I researched like crazy and found AP. No other treatment I found did anything but try to ease the gruesome symptoms of this disease. I wanted more than treating symptoms. I wanted to get better. I’m as well as I am today because of AP.
Last year at this time, I couldn’t get out of a chair, open my mouth more than one finger wide between my teeth, or bend down to put on a pair of socks. I had full body skin hardening and thickening within 60-90 days of diagnosis. It was all just happening so very fast! I knew AP was my very best hope, but I was still scared. Hearing “if you make it through the first 2-5 years” from a rheumy at your diagnosis is just staggering. I talked him into Minocin, and promptly made my appt to see Dr. S. in Iowa. He’s an absolute prince, and the people he works with are truly understanding and compassionate.
Now for my good news! My joint, tendon and muscle issues are now just pesky really. Morning stiffness passes within 15 minutes. My true tiredness has let up considerably, and now pretty doable. Skin has slowly started to loosen and thin a bit on my arms, legs, chest, neck and face. They’re not normal, but boy it feels great! PT helped my regain some joint flexibility and I faithfully do all my exercises many times a day. Things just work better when I stretch. I don’t have pain, and realize how lucky I am. NSAIDS are a once or twice a week inflammation control for me now, compared to several daily last year. Also, I’m thrilled that thus far, I have no internal involvement. I am by no means back to normal, but I’m just really excited I’ve come this far! Thank you Dr. Brown!!!!!
A year ago, I was scared and my entire life revolved around taking this little pill every 12 hours, hoping it might save me. I got worse before I started getting better. It was slow, but I was getting better! Today, I feel like I’m getting MY life back…well, a lot of it anyway. I’m respectful of this disease, but not scared like I was.
If you’re just starting out on AP, take heart and be patient; it is working for me! To all the people here who are ahead of me on this journey , my heartfelt thanks for sharing your experiences, sticking around, and helping on the bulletin board You represent hope.