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Susan L: Diffuse Scleroderma

I was so relieved to finally have a diagnosis.

I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid. But the edema did not get better by two months, so I went to the family physician. He referred me to a rheumatologist and also wanted me to get chest x-rays. It turned out that I had walking pneumonia.

The rheumatologist's nurse practitioner did not know what I had and kept trying different medicines. The only medicine that seemed to help was prednisone because when I tried to stop taking it, the swelling came right back. By May 2006, she was almost ready to diagnose me with sero-negative rheumatoid arthritis. I decided to see another rheumatologist and on my first visit, I heard the diagnosis: scleroderma. At that time I was taking prednisone (see Prednisone Warnings for Scleroderma) , plaquenil, and a pain medication.

I was so relieved to finally have a diagnosis. I thought that meant I would get the proper treatment, but there is no treatment or cure. My skin tightening progressed to my trunk and thighs. The edema was gone but my skin was tightening so that I did not have wrinkles on my forehead. My sclerodactyly prevented me from making fists and completely straightening my fingers.

I went to see a scleroderma expert who thought I had a rapidly progressing case and suggested that I take my blood pressure every day. She prescribed some medication and said I would have to get my blood tested regularly. It was getting harder to fasten my bra across my back and change diapers. Raynaud's was pretty bad that winter and I started to fear going outside. I started to worry that I would not live to see my children graduate. But I was not going to give up.

It has been nine months and I am doing better. I also used acupuncture and massage therapy, and herbal supplements on and off during this time. I can pick up the skin on the back of my hand. I see five wrinkles on my forehead. My knees are not as stiff so it is easier to squat. My skin tightening on my trunk and thighs is gone. I do have these nodules on my chest and back that are not painful (since January 2006). I also have some neuralgia symptoms occasionally. My lungs are fine and I do not have problems with reflux or swallowing so I am hoping that I won't get any internal organ involvement. I am delighted to feel better!

My lab work continues to show I am ANA negative, RH negative, and I only test high for gamma globulin. My SED rate has gone down from 64 to 23. I am no longer worried about living to see my children graduate. I am hoping that I will be healthy enough to dance at their weddings!

I'd be interested in hearing from anyone who has developed diffuse scleroderma after childbirth or who have young children."

~ Update 02-07-11 ~

It is hard to be hopeful with a serious condition like diffuse scleroderma but don't give up hope.

Maybe the stubborn streak in me is useful finally. I continue on my new treatment, which halted my symptom progression and reversed symptoms.

Since it's been five years since my first symptoms, and I have not had any internal organ involvement, I sigh with relief. I still have signs of scleroderma like slight sclerodactyly but I can make an almost tight fist and my Raynaud's isn't as bad as it used to be.

Some improvements are that I can wear moderate heels again for short intervals (an hour), and stand for over four hours. My dark skin is lightening up, wrinkles are back, and my gastrointestinal symptoms are gone (even though the doctor never knew if it was from the drugs or the disease). I can swim briefly in an outdoor pool on a hot day, and I can jog/walk for two or three miles.

Most people can't tell I have a serious autoimmune disease. My anemia is gone; my guess is that the daily molasses intake has helped because I haven't taken any iron supplements. I take a bunch of supplements and vitamins as well as vitamin D.

My new doctor thinks my disease is quiet but I want to head for full remission and I don't think I am there yet. When I saw how quickly my symptoms were progressing, I had to face my worst fears and fight depression. I knew I had to find a way to get better because my family needed me.

Thank goodness for the Internet and my allied health background so I could understand the journal articles and research (or lack of it). I am so blessed for finding a treatment that worked for me. Don't give up hope!

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

Judith 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!

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