In the fall of 1998, my hands began to turn blue when exposed to cold. A rheumatologist diagnosed me with Primary Raynaud's phenomenon.
In March 2000, one fingertip turned blue and stayed blue with a decrease in temperature for about two weeks. I saw a rheumatologist who ran lots of tests, just to be safe, even though he believed I was only suffering from primary Raynaud's phenomenon. We were surprised that I tested positive for SCL-70, which is a scleroderma antibody. The rheumatologist said I have a chance of developing systemic sclerosis later in life.
I did research and began to share symptoms with my rheumatologist I thought might be relevant. I have noticed in the last year or so that I occasionally have audible gasps for air. My finger is still not well after three months. The rheumatologist ordered a chest x-ray. It was suspicious, and the PFT was not normal. I have an appointment with the rheumatologist in August 2000. What should I expect? What should I ask? What tests need to be performed?
In June of 2000, my patient story was posted on the website. At some point, I questioned what it meant to have a positive SCL-70. Shelley Ensz sent me a warm, loving, and caring response and for that, I would like to thank her. She quoted text by two physicians on scleroderma and, of course, advised me to talk with my doctor. I promptly called him and gave him the information she had given me. I told him I had been experiencing shortness of breath for a year. He said if it would make me feel any better, he would order a chest x-ray. I said it would make me feel better. The chest x-ray was suspicious; the PFT was not normal; and the high-resolution CT scan showed inflammation in my lungs.
Thanks to this, I received a quick diagnosis of diffuse systemic sclerosis with lung involvement in August 2000. I began a series of six low-dose chemotherapy treatments four weeks ago. Upon completion, I will have another CT scan to determine what difference the chemotherapy has made. My rheumatologist is following the NIH criteria for treatment based upon the success lupus patients have experienced with this protocol. I am also searching for alternative medicine and looking into natural healing. Thanks a million for your help and your website!
I had another PFT one year ago after the six chemotherapy treatments. It showed there had been no change. I had two more low-dose treatments and then moved from Germany back to America in June 2001.
I finally saw a rheumatologist in December 2001. She recommended that I see a pulmonologist, which I did in January 2002. I had another PFT, which showed no progression of my condition since August 2000. Hooray! I had a bronchoscopy and a lung biopsy to confirm my diagnosis, and it was positive for scleroderma-induced alveolitis. The pulmonologist and rheumatologist both suggested I take steroids for two months and have another PFT. I refused to take the steroids. I have learned that studies show that steroids are not good for people with my condition.
I regularly pray for healing and attend church. I am a member of the local YMCA and I exercise. I am taking a lot of vitamins and minerals, and I refer often to books on integrative medicine. I just ordered a breathing CD, and I have begun to take a Chinese herbal blend for healthy lungs. I try to live one day at a time and trust God to heal me, which may be with chemotherapy and/or a combination of other treatments. So as my personal pathway to healing is revealed, I intend to follow it.
I just received a call this week from my rheumatologist in Nashville. She contacted Dr. Barbara White in Maryland, who thinks I have not received enough chemotherapy, so I will begin this week taking it daily for eighteen months.
There is a clinical trial going on at Virginia Hospital in Nashville by Drs. King and Strickland. A woman with whom I have spoken said she looked like a burn victim and that within a matter of weeks, this procedure helped her return to virtual normalcy. I will call my doctor again and ask about this treatment for scleroderma-induced lung disease.
I have some skin tightening, but at forty-four years of age, it is flattering at this point. Perhaps the cosmetic and pharmaceutical giants are aware of this, and they are pouring research dollars into finding a cure, which will lead to bottling and selling what induces this process in the first place!
New email address needed.
Old Email Prefix: deborahpeck57
Story posted 6-4-99
Story updated 2-4-02
Story updated 2-18-02
Story Edited 8-4-03 JTD/V1
Email note posted 01-19-05 SLE
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Diffuse Systemic Sclerosis
Dr. White in Maryland
Steroids and Scleroderma
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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