Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Published: July 30

I am 18 years old, and I was told I had scleroderma in 2005. I always knew there was something wrong with me because I always got sick, was always tired, and just felt bad my whole childhood. It took years for a doctor to tell me what was wrong. I was sent to a specialist in St. Louis. They did a lot of tests. I get the pitted scars on my fingertips and my whole body has a swollen look to it. I don't like to explain the disease to people because they don't understand what I go through. I work two part-time jobs and go to college.

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Published: July 09

I am 68 years old and was diagnosed with CREST syndrome 3 years ago I have been on medication called Diltiazem since them, but last year I had a bout with Raynaud's, when my index finger was very painful and became blue and hard. I was rushed to the hospital and given medication from a vascular dr. The finger finally healed and looks and feels very good; however about 9 months ago I started having shortness of breath especially after climbing stairs or walking the dog. I've had several echocardiograms and was then told I needed to have a right heart cauterization, which I had last week now I've been diagnosed with Pulmonary Hypertension which is a lung disease. I'm on oxygen and have now been put on a drug called Revatio. I just started taking this drug. Its side affects are for me mostly getting dizzy after during certain chores, since I just started taking the drug, I will be talking to my pulmonary specialist next week. I take the drug 3 times a day in 8 hr. intervals. I do not use oxygen when sleeping during the night. Hopefully with this drug I can get off the oxygen completely.

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Published: June 26

I am 57 yrs old, four years ago, I start feeling tired, pain in the legs and hands, I had several blood tests and my Doctor said all my Lab work was normal, I went to my OBGYN and I told him the history of my problem with my family doctor no finding anything wrong with me and I have problems with headache, pain in the legs, swollen hands, difficulty swallowing, tightness of my skin-face looking very shiny and younger than my age, he recommended to see a Rheumatologist, this doctor sent me with a Dermatologist, I had biopsies of the skin and found out that I have Systemic Scleroderma, I was given Methotrexate and Prevacid for the heartburn, this medication affected my liver, at this point I was having problems walking , moving, difficulty swallowing, the Rheumatologist start giving me shots of steroids, and I decide to drop all medications, and visit an acupuncturist, it help me to move, I start walking again, and now I keep a good low protein diet, osteoporosis diet, salt diet, I exercise 45 minutes everyday and go with my husband dancing 3 hours every Friday, it helps me more than all the medications, and treatments I had before, I still have problems with inflammation in the hands, sometimes itching, tenderness of the skin, pain in the legs if I do not exercise. I notice that a good diet, exercise, drinking water and having a positive attitude has helped me to get better every day and continue a normal life. I never stop working or having fun with my family, specially my children. I take all kind of vitamins also.

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Published: June 25

I am a 55 yr old white female, my father had scleroderma and his hands, arms feet and legs were greatly affected, he died at age 42 with what they said was lung cancer but he had breathing problems a lot all the time I could remember. I was just diagnosed with scleroderma a month or so ago, was diagnosed with RA and lupus some 5 yrs ago and I have for the last year and half been being treated with mexrethrotate shots weekly. I also have many lung and breathing problems I have pneumonia every year and sometimes more than once. I suffer from loss of bowel problems and digestive problems. My blood pressure has recently been going up and down a lot. The only reason they now say that I have scleroderma is because my skin on my arm and legs has become so hard they can't put an IV in it takes about 6 to 7 tries to get one in me and they can't hardly stick me to draw blood. I am already looking at possibly needing oxygen sometime in the very near future. Everyone has always said how young I look for my age but it seems now it is starting to catch up at a fast rate, and my skin is looking older to quickly. I am very scared of what the future holds and how much time I have left at a fair quality of life. I try to always stay positive, because I love life and people. I would like all the info on this I could get, since there wasn't any when my father had it and dies in 1963, I just remember how pitiful he looked and how bad he hurt, and how cripple he became.

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Published: May 28

A 24-year-old male friend of mine has scleroderma. He was diagnosed in high school when skin patches first appeared under his arms. There was no further development of the disease until a few months ago (he is now 24 years old), when the skin patches began to grow bigger. They have not spread to any other limbs. He is also tired all the time, works full time but is in bed most nights by 8 p.m. He also has a poor recovery time after climbing stairs while talking. Apart from this information, and some of it just from observation, he is very closed and will not talk about what's happening to him. The progression of his scleroderma is not typical of anything I have read on the Internet. His doctor diagnosed him with systemic scleroderma. He doesn't suffer from Raynaud's. It's so confusing.

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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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