I was diagnosed with Eosinophilic Fasciitis almost a year ago. My symptoms came on very suddenly and started with my muscles being so sore it was hard to move. From there my skin got very hard and tight and eventually my upper arms looked like an orange peel.
It wasn't until my skin became bumpy that my doctor finally realized what I had. The diagnosis was made after a muscle biopsy was done.
My doctor started me on 60 mg. of prednisone and slowly tapered me down to where I am now, 3 mg. a day. I was due to come off the prednisone this week, but after my latest blood work, I was told my Eosinophilic were starting to increase again.
I have come a long way since last October, but I am still far from being normal. My arms and legs are still tight and I still cannot make a fist.
I would love to hear from anyone who has this unusual disease. In particular, I am wondering how people are doing now after previously having Eosinophilic Fasciitis.
Email: [email protected]
Story edited 10-20-06 JTD
Story posted 10-26-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.