Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: lee, 45-54 Female (Patient) Published: March 13

I was told I had scleroderma in 2004, I was bed ridden for nearly 3 years. Two years ago I went on a course of chemotherapy, which has help me a great deal. I can move around and do things again. I have a bit of my life back, even though I will never work again at least I can do things. I keep getting bad reflux which ends up in my lungs so I am ending up with pneumonia; this has started about 4 weeks back. I am not sure what the next course of action is, I try anything that has worked for others and I have been on many medications, most didn't work.

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Comment from: kelticlady, 45-54 Female (Patient) Published: November 29

I am 49 years old right now. I was diagnosed with scleroderma in 1992. Two years later, I was in the hospital with congestive heart failure. I really have not progressed much since then. I do have trouble with my hands and arms. They do not straighten out very well. I take a series of medicines: Cuprimine, Captopril, and Diltiazem. I do suffer emotionally and from depression. That has been the worst for me. I do feel lucky to be here today, and I try to be thankful for the time I have been given. I always get my rest.

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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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Patient Comments

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Scleroderma - Symptoms and Signs Question: What are your scleroderma symptoms and signs?
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you, a friend, or relative have? Please share your story.

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