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.
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.
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.
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.
Comment from: Erin, 19-24 Female (Patient)Published: November 18
I was diagnosed with scleroderma when I was in elementary school. I started developing skin patches on my right calf, then my right thigh, my right buttock, and then the right side of my ribs. It had been itchy, and after a while, I lost fat in those areas with a large amount of discoloration. Being that I was only in elementary school, I grew up being very self-conscious and insecure about my scars. I, of course, had other problems, such as gastrointestinal ones, and I still do. But thankfully, the disease hasn't spread further or affected my internal organs. I am now 20 years old, and while I would like to say it has made me stronger, I still feel very insecure and unsure of what to tell those who see my scars and think they are bruises or burns. It could be a lot worse, but the external scars are so damaging to my ego. I am considering plastic surgery to see if they can't help fix the lesions.
Comment from: JP, 45-54 Female (Patient)Published: November 18
I was diagnosed with CREST Syndrome in 1985. I have had many different complications. Leg ulcers have been my No. 1 problem. I have been doing well, and all my medications have been decreased until just this past week. I have been experiencing shortness of breath. I went to my regular physician and they checked my heart and pulmonary functions. I just went to my regular appointment for my rheumatoid arthritis (RA) and had taken along copies of all my tests. My doctor said they were looking at me like a regular person with shortness of breath and not a scleroderma patient. He increased my medication, and I am feeling better and hoping I didn't wait too long and have damaged my lungs. I just wanted others to be aware and not hesitate to call the doctor they see regularly for their scleroderma when you have serious symptoms.
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High blood pressure, also known as hypertension, is a repeatedly
elevated blood pressure exceeding 140 over 90 mmHg -- a systolic pressure above
140 with a diastolic pressure above 90. There are two causes of high blood pressure, primary and secondary. Primary high blood pressure is much more common that secondary and its basic causes or underlying defects are not always known. It is known that a diet high in salt increases the risk for high blood pressure, as well as high cholesterol. Genetic factors are also a primary cause. Secondary high blood pressure is generally caused by another condition such as renal hypertension, tumors, and other conditions. Treatment for high blood pressure is generally lifestyle changes and if necessary, diet.
GERD (gastroesophageal reflux disease) is a condition in which the acidified liquid
contents of the stomach backs up into the esophagus. The symptoms of uncomplicated GERD are heartburn,
regurgitation, and nausea. Effective treatment is available for most patients with GERD.
Sjögren's syndrome is an autoimmune disease involving the abnormal production of extra antibodies that attack the glands and connective tissue. Sjögren's syndrome with gland inflammation (resulting dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjögren's syndrome. Sjögren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjögren's syndrome. Though there is no cure for Sjögren's syndrome, the symptoms may be treated by using lubricating eye ointments, drinking plenty of water, humidifying the air, and using glycerin swabs. Medications are also available to treat dry eye and dry mouth.
Raynaud's phenomenon is characterized by a pale-blue-red sequence of color changes of the digits, most commonly after exposure to cold. Occurring as a result of spasm of blood vessels, the cause is unknown. Symptoms of Raynaud's phenomenon depend on the severity, frequency, and duration of the blood vessel spasm. Treatments include protection of the digits, medications, and avoiding emotional stresses, smoking, cold temperature, and tools that vibrate the hands.
Small intestinal bacterial overgrowth (SIBO) refers to a condition in which abnormally large numbers of bacteria (at least 100,000 bacteria per ml of fluid) are present in the small intestine and the types of bacteria in the small intestine resemble more the bacteria of the colon than the small intestine. There are many conditions associated with small intestinal bacterial overgrowth, to include: diabetes, scleroderma, Crohn's disease, and others. There is a striking similarity between the symptoms of irritable bowel syndrome and SIBO. It has been theorized that SIBO may be responsible for the symptoms of at least some patients with irritable bowel syndrome. Symptoms of SIBO include: excess gas, abdominal bloating, diarrhea, and abdominal pain.
A keloid is a scar that doesn't know when to stop. When the cells keep on reproducing, the result is an overgrown (hypertrophic) scar or a keloid. A keloid looks shiny and is often dome-shaped, ranging in color from slightly pink to red. It feels hard and thick and is always raised above the surrounding skin.
Pulmonary fibrosis is scarring throughout the lungs. Pulmonary fibrosis can be caused by many conditions including chronic inflammatory processes, infections, environmental agents, exposure to ionizing radiation, chronic conditions, and certain medications. Symptoms include shortness of breath, coughing, and diminished exercise tolerance. Treatment options are dependent on the type of pulmonary fibrosis; lung transplant and/or medications are optons.
Dysphagia or difficulty in swallowing, swallowing problems. Dysphagia is due to problems in nerve or muscle control. It is common, for example, after a stroke. Dysphagia compromises nutrition and hydration and may lead to aspiration pneumonia and dehydration.
Pulmonary hypertension is an abnormal elevation of the pressure in the pulmonary circulation caused by the constriction of the blood vessels that supply blood to the lungs. Shortness of breath and dizziness are symptoms of pulmonary hypertension. Treatment involves diuretics, blood thinners, calcium channel blockers, and using supplemental oxygen to increase blood oxygen levels.
Pericarditis is the inflammation of the pericardial sac that surrounds the heart. The causes of pericarditis include injury from heart attack, heart surgery, trauma; viral or fungal infection, HIV, tumors, mixed connective tissue disease, metabolic disease, medication reactions, or idiopathic. Treatment for pericarditis is generally medication, however, sometimes surgery is necessary.
Primary Biliary Cirrhosis is a chronic disease characterized by progressive inflammation and destruction of small bile ducts within the liver. The bile ducts transport bile from the liver to the intestine for the absorption of fat and elimination of waste products. The causes of Primary Biliary Cirrhosis may involve autoimmunity, infection, or genetic predisposition, acting alone or in combination. There are many medications and treatment options available for those with this and other associated diseases of Primary Biliary Cirrhosis.
Interstitial lung disease, is a term to describe a certain lung condition. Causes of interstitial lung disease include lung infection, exposure to toxins in the environment (asbestos for example), medications (chemotherapy), radiation therapy, and chronic autoimmune disorders. Common symptoms of interstitial lung disease include a dry cough and shortness of breath. Diagnosis and treatment depend upon the cause of the condition.
Polymyositis is a disease of the muscle featuring inflammation of the muscle fibers. It results in weakness of the muscles which can be severe and when associated with skin rash, is referred to as dermatomyositis. Although the cause of this disease is unknown, diagnosis includes physical examination of muscle strength, blood tests for muscle enzymes, electrical tests of muscle and nerves, and conformation by a muscle biopsy. Treatment of Polymyositis and Dermatomyositis includes high doses of cortisone-related medications, immune suppression, and physical therapy.
Connective tissue disease is when the body's connective tissues come under attack, possibly becoming injured by inflammation. Inherited connective tissue diseases include Marfan syndrome and Ehlers-Danlos syndrome. Systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymositis, and dermatomyositis are examples of connective tissue diseases that have no known cause.
Connective tissue diseases are disorders featuring abnormalities involving the collagen and elastin.
Connective tissue diseases that are strictly inheritable include Marfan syndrome and Ehlers-Danlos syndrome. The classic immune-related connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis. Treatment is often directed at suppressing the inflammation present in the tissues by using anti-inflammatory and immunosuppressive medications.
Preeclampsia is related to increased blood pressure and protein in the mother's urine. Preeclampsia typically begins after the 20th week of pregnancy. When preeclampsia causes seizures, it is termed "eclampsia" and is the second leading cause of maternal death of in the US. Preeclampsia is the leading cause of fetal complications. Risk factors for preeclampsia include high blood pressure, obesity, multiple births, and women with preexisting medical conditions such as diabetes, kidney disease, rheumatoid arthritis, lupus, or scleroderma. Pregnancy planning and lifestyle changes may reduce the risk of preeclampsia during pregnancy.
Bowel or fecal incontinence refers to the loss of voluntary control of stool, or bowel movements. The condition can include partial incontinence, in which a person loses only a small amount of liquid waste, to complete incontinence, in which the entire bowel movement cannot be controlled. Diet changes and elimination of certain medications can help patients to regain bowel control. Treatment involves a combination of medication, biofeedback, and exercise.
Eosinophilic fasciitis is a skin disease that causes thickening and inflammation of the skin and fascia. Symptoms include redness, warmth, and hardening of the skin, as well as occasional tissue and joint pain. Treatment for eosinophilic fasciitis aims to eliminate inflammation through the use of aspirin, NSAIDs, and cortisone. Aggressive forms of eosinophilic fasciitis may require the use of immune suppression medications.
Bowel or fecal incontinence is the loss of voluntary control of stool, or bowel movements. This condition can vary from being partial, in which a person loses only a small amount of liquid waste, to complete, in which the entire solid bowel movement cannot be controlled.
Bowel incontinence affects more than 5.5 million Americans. Both men and women suffer from this problem, though it is more common in women because of injury to the anal muscles or nerves that can occur during childbirth. Bowel incontinence becomes more common with advancing age as the muscles that control bowel movements (anal sphincter muscles) weaken.
Often, embarrassment and the stigma associated with incontinence prevent people from seeking treatment, even when incontinence affects his or her quality of life. Many people resort to altering their social and physical activities, even their employment, to cope with the problem. In addition, some peo...
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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.
Related Reading: scleroderma | congestive heart failure | Captopril