SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Claude: Eosinophilic Fasciitis

I really hope they find out what was causing this, as I am rapidly regressing to the point I was at last summer.

For Claude by Sherrill Knaggs, ISN Artist I am a forty-four-year-old male from Ottawa, Canada. In the late spring, early summer of 2003, my wife noticed some red splotches on my lower legs. These would turn black and blue and would then reappear at a later date. She told me to mention this to my doctor. I did so in passing when I went for my annual check-up. I did not put any emphasis on this, as they did not bother me and I felt fine. My doctor thought they might be allergies, and suggested I try an antihistamine. I did, it did not help, and I forgot about the splotches since they did not bother me.

Later during the summer, we went on a cycling holiday. I could not ride more than twenty kilometers without almost dropping dead from exhaustion. (I can usually easily do over one hundred kilometers per day.) Then I started having joint pain and stiffness, as well as extreme fatigue, and I could not get out of a chair without help. Also, I could not kneel down. I lost over twenty-five pounds in a few weeks. I could not straighten out my hands or make a fist. I also had muscle cramps in my legs.

At that point, I knew there was something seriously wrong. My family doctor sent me to see a rheumatologist after running a battery of other tests to eliminate cancer and other things as a source of the problems. The rheumatologist felt it was either scleroderma or eosinophilic fasciitis (EF). They did a deep biopsy in my calf, and I was diagnosed with EF.

The doctor started treating with prednisone and plaquenil. These did a good job of keeping my flexibility problem from getting worse and they even helped bring back a little flexibility, but not much. The biggest change was in my fatigue level, where I felt tremendous improvement. However, the disease has kept spreading. I have it all over my body, including in my throat, on my torso, and on my back. I take a potassium supplement which helps with the cramps. I still get cramps in my legs and back, but much less than before.

I also experience a very painful sensation on the front of my feet, at the ankle level. It feels as if I had been scalded. Having socks touch my feet is very painful. A dermatologist prescribed a cream, which did not help. She then did some research and found that some people with immune system disorders develop a condition similar to mine. She prescribed an anti-seizure medication, which seemed to be working very well. I was getting some genuine relief. At about the same time, my rheumatologist added methotrexate to my medicine cocktail, to try to stop the spread of the disease. After one dose, two days after my first dose, my neutrophil count, a type of white blood cell that fights infection, dropped to zero. They stopped all medication except for the prednisone, while they try to find out the cause of the drop. My neutrophil count has since come back to normal levels, but this latest episode only started a few weeks ago, so I do not know the cause of the problem.

I really hope they find out what was causing this, as I am rapidly regressing to the point I was at last summer. My fatigue is coming back, and the inflexibility is now back to where it was last summer. This is getting a little discouraging.

I would be very interested to hear from others who have this disease, or similar problems.

To Contact the Author

Claude
Email: [email protected]
Story posted 12-18-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Eosinophilic Fasciitis
Scleroderma

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Claudia: Systemic Scleroderma
 
Most Recent Donors

Winn Schillberg
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!

In Loving Memory

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.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.