Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

Comment from: Barbara, 65-74 Female (Patient) Published: May 30

Here is a positive story about scleroderma. I was diagnosed 6 years ago with diffuse scleroderma. At the time of my diagnosis I already had pulmonary fibrosis and within months went into kidney failure. My skin was stretched tight over all parts of my body and the initial medication resulted in a lot of hair loss. I was a mess. However, my doctors kept close track of my progress, adjusting and adding new medications as needed. Three years ago I was sent for double-lung transplant assessment as it was thought that I would not make it without. Today, without that transplant I feel healthy, my skin has softened and returned to its previous state, my kidney failure is managed (so far without dialysis), and my pulmonary hypertension and fibrosis is being monitored, but does not require treatment at this time. So, just wanted to say that life can improve and when I was in my worst condition I would have liked to have heard some good news because most of the sites I checked made me feel despair. Find the most scleroderma-knowledgeable doctors in your area, then work with them to aggressively manage your disease. There may be no cure, but there can still be good quality of life.

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Comment from: 65-74 Female (Caregiver) Published: May 09

My mom has had Systemic Scleroderma since 1992, that we know of. She was misdiagnosed and we started off seeing a rheumatologist for answers. She was given Minocycline, as part of a research program, but quickly got off of it. She wanted quality over quantity. My mother took her illness into her own hands and researched natural medications. She happily spent 15 years without conventional medicines until she was diagnosed with Pulmonary Hypertension. She is now forced to take Revatio and a few other meds but she is still taking her disease into her own hands. Her diet and exercise is essential. Don't give up hope and always trust your body. Unfortunately, this disease is different for everyone and so are the symptoms.

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Comment from: Red, (Patient) Published: April 04

My sister was diagnosed with scleroderma (morphea) 14 years ago when she was 12. Started out as what looked like bruises along the back of her left arm, and slowly, the "bruises" turned into scar tissue. After about a year or so, she was diagnosed. Now, the back of her left arm, including portions of her shoulder, wrist, hand, and the pinkie and ring finger on her left hand has severe scarring - shiny, thickened, inflamed and discolored skin - with slight bone deformities in her two affected fingers, as well as small calcium deposits on her fingers and elbow.

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Comment from: anna, 45-54 Male (Caregiver) Published: February 22

My husband is 48 and has been diagnosed 5 years but we have been seeing the dr. since 1997 but no one could tell us anything. He has Raynaud's to both hands and has the butterfly rash on his nose he does have hypertension. These are the only symptoms all his blood tests are neg. he had gastric by-pass 3 years ago and has done well with that. His fingers having starting having contraction toward the palm I am hoping that this is from a vitamin deficiency the dr. has drawn blood and we will know Monday. When he has any change at all it worries me! I will pray for everyone!!!

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Comment from: Pasqual, 35-44 Male (Patient) Published: January 19

I was diagnosed with localized Scleroderma, also called Morphea, six months ago. At first I had a one inch shinny patch on my elbow and then another patch, about four inch, developed on the right leg. My dermatologist prescribed me a cream called Dovonex (pretty expensive cream). I used it for a couple of months but I did not see any difference. I addition the cream was making my muscle sore at night. I started using Jergens over the counter cream. It helps the skin stay moist when I use it twice a day. Sometimes, depending on how I sleep, my leg muscle hurts. I just turn on the other side and pain goes away. Other than that the condition does not bother me. I just try to ignore and go on with my life. Hopefully someone will develop an effective drug someday.

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Comment from: marivan, 55-64 Female (Patient) Published: January 19

My doctor finally diagnosed me, (after seeing her for 10 years and her insisting I had Fibro all those years) with Crest Syndrome and MCTD, (mixed connective tissue disease), which includes lupus, scleroderma, Raynaud's, etc. I have Gerd, IBS, heart pains and high blood pressure with high heart rates, trouble breathing, whenever I try to eat, walk, etc. and now my esophagus is not doing well. Sometimes I can't swallow at all, other times, while drinking my throat closes up and I end up gagging. I'm on 300 mgs of morphine with Norco for break through pain, and all kinds of medications for all my other symptoms. I also have a lot of swelling throughout my body and I have to wear gloves to try to keep my hands warm. I'm always cold, too. I'm homebound and use a power chair because I can't walk without severe pain. I have a high degree of pain tolerance and the pain medication helps a little. But, I have a deep faith, pray every night and try to keep a smiling face every day, when I can. I have no idea of my future, except to know I may not last 10 years. I'm not afraid.

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