Donna S: Odd Version of Scleroderma

I am a female, thirty-nine years old. I suffered my first symptoms in May 1999, and was diagnosed in October 1999. I have systemic scleroderma.

The major involvement is my ankles and feet. I have joint stiffness in my fingers, hands, wrists, and knees, however, I have no hardening of the skin in those areas. The hardening is on my ankles and tops of my feet. My toes are fine. I do not have any internal organ involvement, yet. I also do not have Raynaud's and have no problem with cold temperatures other than a slight stiffness in my joints. I have never had ulcers on my fingers or toes, therefore, they could not deem me with localized scleroderma. I have never had internal organ involvement, therefore, I am not textbook systemic. I sort of have the worst of localized and the best of systemic scleroderma.

My dermatologist has spoken with numerous dermatologists across the country, and they have not heard of my particular case of scleroderma. They also have not heard of blisters being associated with scleroderma in any form, but I certainly have them.

My first symptoms started as muscle fatigue and soreness. Then I retained a lot of fluid all over my body. I was given prednisone to relieve the fluid which worked quite well. I lost six 'pounds' of fluid the first night of taking the prednisone. Soon after that my hands began to draw up. I had four months of physical therapy and responded quite well to that. I am now able to completely open my hand and make a fist, however, there are still some joint contractures.

I had begun light treatment for three months, but I had to terminate the treatment due to ulcers forming on my ankles.

In July 2000, I started getting ulcers on my outside ankles. I was forced to take a leave from work as a result of this and was confined to a wheelchair. I used una boots and numerous creams to aid in healing.

Finally in January 2001, the ulcers healed. I filed for disability through my employer and Social Security and was denied by both. I then began five months of physical therapy on my knees, ankles, and toes. I was responding well to this therapy, and I was able to return to work in July 2001. I worked part time in July, then I began full-time in August.

In late August 2001, I began to experience severe itching on my ankles. My dermatologist prescribed hydrocortisone cream to help with the itching. After using the cream for about a week, a large blister developed on my right ankle. I thought this was a result of an allergic reaction to the medication and discontinued use. My physical therapist stopped my therapy because she did not want me to tear the skin off the blister. Soon after, more blisters began developing. These blisters are very large, sometimes covering the entire side of my ankle, and they are VERY painful. I have visited the University of Virginia Medical School in Charlottesville, as well as my dermatologist, several times, and they have never seen this condition with scleroderma, nor do they have a solution. I tried mega doses of prednisone and numerous ointments and creams, but nothing has helped. I have tried elevation of my ankles, but this has not helped either.

It has now been one year since these blisters started, and they are still going strong. I had to leave work in March 2002, and I have finally received my Social Security disability benefits, but I have to be reviewed in May 2003 for continued benefits. I have applied for long-term disability benefits through my employer, however, I haven't been accepted yet.

The medications that I have tried are Penicillamine, Plaquenil, prednisone, Cardizem, minocycline, doxycycline, Sandimmune, Darvocet (for pain), and too many creams and ointments to mention.

I am thankful that I do not have internal organ involvement, but these blisters are really taking their toll. I have never experienced such continual pain. I get to the point some days when I do not think I will survive. I am hoping that someday someone finds a cure for this dreadful disease, but until then, I, like you, will continue to suffer.

If you have similar symptoms or would like to email me please feel free. Thanks for listening.