Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: Prairie, 45-54 Male (Patient) Published: September 27

I was diagnosed with scleroderma 9 1/2 months ago. When my symptoms initially appeared, I went from being able to run 20 miles a week to having problems walking down stairs. I was in significant pain and had woken up at night from the pain. I was having some difficulty swallowing. I was given blood tests (twice) and I have systemic scleroderma. I have very limited skin involvement so far. In my first month I was treated with a high dose of prednisone and my symptoms have diminished greatly. I am not on any specific medications at this time. I try to stay as active as possible and keep moving. If I sit for any length of time, my muscles will start feeling like they are atrophying. So, I have been getting 10,000 steps a day in and do 20 pushups every other day. I monitor my symptoms. Most people look at me and think I am the picture of health (right now I can run a mile under 7 minutes). But this is a very scary disease. If you are diagnosed, make sure that your doctor does baseline testing for heart and lungs and then follows up immediately if there is any change.

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Comment from: NAN, Female (Patient) Published: June 10

I have had scleroderma for two years now. Cold water really bothers me now. It never bothered me before. Cutting up cold vegetables from the fridge or holding a cold cup of water is difficult. Also I have a lot of foot pain and I go stiff if I sit to long. I wonder a lot what the future holds for me and my diffuse scleroderma.

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Comment from: schultzie, 65-74 Male (Patient) Published: November 17

I've had scleroderma since 1986. It was diagnosed after several occurrences of Raynaud's phenomenon. Shortly thereafter my fingers started to curl. After two weeks of research, I discovered that leaving meat out of my diet would help. I tried a vegetarian diet and to my surprise and joy the fingers straightened out in about 10 days. That's 28 years ago. You may have guessed, I'm still a vegetarian.

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Comment from: faith, 45-54 Female (Patient) Published: September 11

I am 49 years old. I was diagnosed with scleroderma in April 2014. My arms started to itch badly, skin harden, and scarring after I had carpal tunnel surgery the later part of 2012 on both my hands. No doctor could tell me what was causing the itch. On a visit to a new hematologist she noticed my arms and asked what was going on with my arms. I explained to her the situation. She was the first doctor that could even tell me what it might be. She had me do extensive lab work and sure enough when she got the results it was as she anticipated; it was scleroderma. I have this sick feeling inside of me all the time. I feel tired all the time. My body feels cold, then hot, that I need to take hot showers to warm up my body. My toes and fingers are swollen and numb all day. My fingers and toes get white from being cold. My joints hurt. I have been dealing with this for 17 months and I wouldn't wish any of it on my worst enemy. To all that suffer from this disease chin up and try to live life to the fullest.

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Comment from: Loretta, 65-74 Female (Patient) Published: January 14

I'm a 65 year old woman who was finally diagnosed with CREST syndrome (limited scleroderma) a year ago. My symptoms began with Raynaud's, then GERD, then a heart attack, later an enlarged heart and pulmonary hypertension. I had an infusion catheter which pumps the medicine Veletri directly into my heart. That along with Viagra has helped my heart shrink back from 98 percent to 51percent, so I'm able to breathe much better now. I also deal with scleroderma, my skin has numerous red blotches and skin eruptions with boney slivers. I was told I have internal rheumatoid arthritis and fibromyalgia, so I'm in pain quite often. My biggest problem is how this disease has affected my bowels. I seldom leave my home due to loose bowels that can erupt at any given moment. I am very grateful however, that I'm alive and my heart and breathing have improved with Veletri. I only hope this information will help someone dealing with these symptoms.

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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 have?

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