I am posting my story 'as it happens' because reading the posts on this board made me feel less alone after my diagnosis. To me, posts with follow-ups are the most comforting. Hopefully, someone can benefit from the posting of my events as I commit to posting follow-ups regularly. I wish myself and everyone the best in coping with scleroderma.
I s aw my dermatologist today and told her that four or five months ago, I noticed a small indentation at my hairline near the center of my forehead. Within the past two months, a purplish line developed down the center of my forehead along with a narrow furrow. She diagnosed linear morphea, gave me a prescription for calcipotriene ointment, and urged me to schedule an appointment with a rheumatologist as soon as possible.
After leaving her office, I began researching en coup de sabre on the internet. Needless to say, the search results were scary as hell and not encouraging. Although thankful that I probably do not have the systemic form of scleroderma, the possibility (probability?) of disfigurement is terrifying.
I have feelings of absolute devastation and regret at not doing more with my 'before diagnosis' life. Problems that seemed big yesterday have shrunk to microscopic size.
I saw a rheumatologist today. Since I live in Houston, Texas (home to the world's largest medical center complex), I am lucky enough to be able to see true experts in the treatment of scleroderma (office of Frank Arnett, M.D., Professor and Director of the Division of Rheumatology, University of Texas/Houston Medical Center).
My specific doctor, Dr. Filemon Tan, confirmed the diagnosis of linear morphea, ordered lab tests to verify his suspected absence of systemic scleroderma, and referred me to a Houston dermatologist, Steven Mays (Also UT/Houston Medical Center), for treatment of the skin effects.
The rheumatologist encouraged me to continue the calcipotriene ointment and also prescribed 400 mg Plaquenil per day. When I asked about more aggressive treatment options, such as methotrexate, he told me that at this point in my case, the risks outweighed the benefits for methotrexate and other, more powerful drugs. From my internet research, I am hopeful that Dr. Mays will be willing to try UVA or UVB phototherapy, since from what I have read, this seems to hold the most promise for stopping the damage of linear morphea.
New email address needed 05-01-08 SLE
Old Email Prefix: carmthomp
Story edited 03-08-06 JTD
Story posted 05-02-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
En Coup de Sabre
Types of Scleroderma
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.