Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: slick1, 55-64 Female (Patient) Published: November 18

In 1999, I was diagnosed with eosinophilia fasciitis. My doctor had me taking Remicade, which worked very well until I started having liver problems. I had a biopsy performed on the muscle, which showed that I had systemic scleroderma. I am now taking Cellcept. I have been taking it for only four weeks, but already my skin is looking better, and I am being told by friends and family that I sound and look as if I feel better. The Cellcept makes me very tired, but we will know more after it completely gets into my system.

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Comment from: 45-54 Female (Patient) Published: August 04

I too was diagnosed with systemic scleroderma. It started with Raynaud's, since then have developed gastro intestinal problems due to the muscles in my esophagus not working anymore. I am undergoing testing for lung hypertension. I also have thyroid problems that have been taking med. for about 25 years. I also have been diagnosed with fibromyalgia. New research is suggesting that hormones play a big part in disease progression. I read where relaxin hormone slows the disease process. This is a hormone found in pregnant women and relaxes the muscles in turn keeps fibrosis at bay. I haven't been given anything that works yet. I can't take much medication due to lung involvement. I have found that sunshine and as much activity as I can muster keeps acute symptoms down. Good Luck and God Bless to all that suffer this crazy disease. I am 54 yrs old.

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Comment from: dawn, 13-18 Female (Patient) Published: August 01

I'm 18 years old female, with scleroderma (local) at the left face. I was diagnosed way back 2006. Having this is so really difficult in my life. I feel so insecure to others, my self esteem is so low. I have no confidence in my self. It leads me to became a shy person. I wonder why I have this because when I was in toddler stage I didn't even have this. I pray that someday Scleroderma can be cured.

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Comment from: refilwe T, 25-34 Female (Patient) Published: April 15

I hate it to my core. I have the most terrible marks on my body. My whole body cramps daily, with my legs being the worst. It feels like someone is literally turning my muscle around. I have this terrible pain in my heart that makes me stop whatever I'm doing. I can't stretch, bend, or even kneel down because of my skin being so tight.

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Comment from: OBF1983, 25-34 Female (Patient) Published: November 29

I am 25 years old and was diagnosed with scleroderma in May of 2008, although my symptoms had started probably a year or so before that. When I first had trouble, I went to my GP, and she told me to cut back on salt and lose weight. Three times I went back to the doctor and got the same response, even though her advice wasn't helping. I was finally referred to a rheumatologist who ran numerous tests that all came back normal. When my skin began to thicken, and I developed ulcers on my knuckles, she sent me to a dermatologist. There, they did a skin biopsy and diagnosed me with scleroderma. It has been a really rough year. I miss a lot of work, I am in constant pain, and I just feel down a lot of the time.

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Comment from: Erin, 19-24 Female (Patient) Published: November 18

I was diagnosed with scleroderma when I was in elementary school. I started developing skin patches on my right calf, then my right thigh, my right buttock, and then the right side of my ribs. It had been itchy, and after a while, I lost fat in those areas with a large amount of discoloration. Being that I was only in elementary school, I grew up being very self-conscious and insecure about my scars. I, of course, had other problems, such as gastrointestinal ones, and I still do. But thankfully, the disease hasn't spread further or affected my internal organs. I am now 20 years old, and while I would like to say it has made me stronger, I still feel very insecure and unsure of what to tell those who see my scars and think they are bruises or burns. It could be a lot worse, but the external scars are so damaging to my ego. I am considering plastic surgery to see if they can't help fix the lesions.

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Comment from: JP, 45-54 Female (Patient) Published: November 18

I was diagnosed with CREST Syndrome in 1985. I have had many different complications. Leg ulcers have been my No. 1 problem. I have been doing well, and all my medications have been decreased until just this past week. I have been experiencing shortness of breath. I went to my regular physician and they checked my heart and pulmonary functions. I just went to my regular appointment for my rheumatoid arthritis (RA) and had taken along copies of all my tests. My doctor said they were looking at me like a regular person with shortness of breath and not a scleroderma patient. He increased my medication, and I am feeling better and hoping I didn't wait too long and have damaged my lungs. I just wanted others to be aware and not hesitate to call the doctor they see regularly for their scleroderma when you have serious symptoms.

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