Susan H: Eosinophilic Fasciitis

I was diagnosed with Eosinophilic Fasciitis (EF) in June of 1999. My kidneys had just failed after having glomerulonephritis for over 30 years.

While I was in the hospital and starting dialysis, my right arm became hard as a rock and swollen. At first I thought it was from the nurses when taking blood. After going to dialysis for about three months, I kept getting worse. My whole body turned to wood. I could hardly move. I thought it was from dialysis.

One day I told my doctor if he could not find out what was wrong with me soon I would not be here very much longer. I was ready to end it all. Losing my kidneys and having a body like wood was just getting to be too much for me. My doctor did some research and sent me to the Texas Medical Center to a rheumatologist. He knew what I had right away as he had two other patients with the same thing. He took a deep tissue biopsy which confirmed my illness. He started me on 80 mg of Prednisone and 200 mg of plaquenil which he increased to 400 mg. In a short time the hardness went away.

I have had the disease for three years now. In August of 2001, I had a kidney transplant. I was taken off plaquenil and Prednisone. Now what is helping my disease is cyclosporine. It is very slowly shrinking away. My skin looks terrible, but at least I do not have the hardness.

My new kidney is doing great, however, I am now fighting myopathy from being given Pravachol and Lipid to lower my cholesterol and triglycerides. They tell you to notify your doctor if you develop muscle weakness. I did but they ignored me. So after three months I quit the medicine on my own. I just knew deep down that the medicine was causing this. Also, my rheumatologist ordered a test of my muscles and that is what they found. I have been in pain for five months. It is gradually getting better, but I have a long way to go. If it was not for this muscle thing I would be really good right now.

My symptoms when I first got EF was the hardness, and itchy skin at night. I could not wash my hair or bathe myself as I could not raise my arms. I could not cook, clean or even get out of a chair without help. One day I tried to make a sandwich and it took me 45 minutes as I had to rest after each step. My hands were very weak too and I could not open jars. Because of the hardness I could not be put on the kidney transplant list. Also I could not have a graft put under my skin. I had a catheter in my chest for 1-1/2 years and could not get my whole body wet. It was so hard living in Texas in the hot summer not being able to feel water over your body. Finally I was able to get the graft and put on the list. It took me 11 months to get a kidney. When I did I was the only match for this kidney in the whole United States!

Right before my transplant I was feeling pretty good. The EF was only affecting my skin. I was swimming laps and even played a little racquetball. I bet I would be doing that now if it was not for the muscle problem.

I was lucky as Prednisone, plaquenil and now cyclosporine was successful in helping my disease.

I would love to correspond with someone with EF and/or myopathy from those terrible cholesterol drugs.

There were days when I was so depressed, but I keep on and know there must be a reason to have this and I hope and want to help others.