Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: Annie, 35-44 Female (Caregiver) Published: September 25

Hi, I'm from the Philippines. My 44 year old female cousin (from my mother's side) just died last week of scleroderma. She was diagnosed in November last year. The hardening of her skin and its spread throughout her body was fast and I guess the doctors here have no idea as to mode of treatment.

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Comment from: ripeberry4, 65-74 Female (Caregiver) Published: September 25

My mother has scleroderma and she has had two fingers cut off is this usually what happens in the later stages

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Comment from: Lyndsey, 25-34 Female (Patient) Published: August 29

I am 26-year-old white female who was diagnosed with UMCTD with a leaning toward scleroderma because my first symptoms were finger swelling along with Raynaud's disease. I spent a year in pain before I saw a doctor, and initially the doctors said my disease was progressing rapidly. I had a finger ulcer and had two pulmonary effusions, besides the debilitation of joint pain. I wanted to write however, to let people know that it is possible to deal with this disease-and to find the right doctor. My doctor has made it possible for me to stay off as many medications as possible and to give me back my life. It has been almost a year since I have had any serious complications with my disease, and I am working again and working on a graduate degree. I know that there is always a possibility of it getting worse, but all I prayed for was for it to be manageable, and I believe that if you get the right doctor and take an active part in your healing that it is ... manageable.

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Comment from: Joan, 65-74 Female (Patient) Published: August 29

I got Raynaud's disease in 2001, and now I have the lung disease scleroderma. I'm getting the chemotherapy drug Cytoxan. I will get this until December, and then I will be tested again. If it doesn't work I will be going to Boston for an experimental drug. I have been on oxygen for a year and also have been on different drugs.

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Comment from: Kenneth , 55-64 Male (Patient) Published: August 08

It has been years to find out that scleroderma is what's wrong with me. I've lost feeling in my feet; my fingers are numb, red and painful in the morning. I have trouble swallowing food at times. I have terrible knee and leg pain. I'm very tried most of the time.

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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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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 have?

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