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

Tony B: Systemic Scleroderma

It has taken me some time to come to terms with this disease.

My name is Tony and I was diagnosed with scleroderma in September of 2000, but I had the symptoms for three years before that. I am sure I do not have to tell any of you what it felt like to be told I had scleroderma and a poor prognosis. It has taken me some time to come to terms with this disease. The SCLERO.ORG Web site and the support of others who have scleroderma has helped me tremendously.

When I was diagnosed with scleroderma through blood work, I was sent to a local rheumatologist who started me on prednisone and penicillamine with a 'wait and see' attitude.

I live one hour from the Cleveland Clinic in Ohio, which is one of the best clinics in the country. I found a good rheumatologist who dove right into the problem by scheduling breathing tests, lung scans, heart tests and complete blood work. After I went back for the test results I found out I had Raynaud's (which I already knew), pulmonary fibrosis and pulmonary hypertension. About thirty percent of my lungs had scar tissue so I was put on cytoxan (a chemotherapy pill) and an antibiotic to go with it to stop the lungs from scarring more. He also doubled my prednisone and penicillamine, and started me on a blood pressure pill (for Raynaud's) and aspirin. After I was on the cytoxan for about a year, I had another lung scan which showed that the scarring had stopped. I was slowly weaned off the prednisone after a year and a half.

Today I am doing better than two years ago and I am pretty much stable on my medications. I am limited with what I can do because of the scarring of my lungs and the shortness of breath. I still have a lot of pain throughout my body, with more severe pain in my fingers and hands, and all the rest that goes along with scleroderma.

To Contact the Author

Tony B.
Email: withheld by request
Story posted 8-20-02
Story edited 7-25-03 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
LINKS
Cleveland Clinic
Cyclophosphamide
Penicillamine
Prednisone
Pulmonary Fibrosis
Pulmonary Hypertension
Raynaud's
Scleroderma

ISN Artist: Ione Bridgman

Ione BridgmanISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .

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 Toot: Atrophoderma
 
Recent Donors
See ISN News for recent donors, including memorials for
Christine Kane, Joleen M. Cascaden.
 

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 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.