I was diagnosed with morphea in February 2002, but had this for a year prior to that without knowing exactly what the diagnosis was. I went to my dermatologist in the very beginning, as I had this one place on my arm that looked red and almost like some sort of bug bite. The doctor prescribed various antihistamine creams that did not help. I had a history of severe urticaria on three prior occasions.
I received three cortisone injections but nothing helped. Then I started to get a very dark area on my neck like a suntan which had the feel of wrinkled leather. It then moved to my abdomen, hips, top of my hands, arms and eventually went to my legs.
My dermatologist sent me to a major medical center in my area. They have a dermatology conference once a week where medical students, pathologists, dermatologists, and professors do evaluations. They did a biopsy and this revealed generalized morphea.
I started treatment with methotrexate once a week. After six months, this seemed to be helping but in December, I started getting new spots on my legs and in March, new ones on my arms. The areas on the back of my upper legs look the worst. It appears as dark black spots with very white blotches mixed in. They increased my methotrexate, but after six weeks there was still no improvement. The doctor has asked me to consider Enbrel.
I am at a point where I do not know what to do. I read where one person stated she had been asked if her husband beat her. I have been asked the same. I have also been asked if I was burned, or gotten too much sun. Then there are the ones who say nothing and just stare at my neck. I just want to scream, "What are you looking at?" So finally I decide to tell them what is wrong and they say, "Oh, I did not even notice it." Duh!
Any remarks on Enbrel® or any other medicines would be greatly appreciated. None of the creams have helped me.
I was also diagnosed about fifteen years ago with fibromyalgia and after multiple medicines, Zoloft seemed to help the most with Ambien for sleep. I am now up to 200mg of Zoloft in the mornings and 150mg of Wellbutrin in the afternoons. Currently I used Trazodone for sleep. I am also on 75mg of Toprol for a heart condition, and Maxzide, Allegra D, Pravachol, and Folic Acid because of the Methotrexate. I get so tired of taking meds.
I went through menopause early at the age of forty and since then seems like everything has been downhill.
Thanks for letting me ramble on. It is so good to tell people about it and get their responses.
Email withheld by request
Story posted 3-13-03
ISN Senior Artist: Sherrill Knaggs
ISN Story Editor: Saba Sadiq
Saba Sadiq is the ISN Story Editor for this story.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.