Scleroderma

What is Scleroderma?

Scleroderma is rare autoimmune illness, meaning your immune system attacks your healthy cells and tissues. Scleroderma causes scarring in the skin leading to  thickening and tightening.  It can also cause inflammation (swelling) in other parts of the body including the lungs, heart, kidneys and intestines resulting in scarring.  There are different forms of scleroderma depending on which part(s) of the body it affects so you may hear doctors use names like systemic sclerosis, CREST, and limited scleroderma.

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Our Approach

Scleroderma looks different in different people. At UR Medicine, one of our experienced rheumatologists will make the diagnosis after a comprehensive evaluation. Our health care team will provide you with education and support and will also work with other specialists to provide you with the care and treatment you need. We will also help you coordinate the appointments you need for lab work and other tests as well as appointments with other specialists as needed.

Evaluation and Diagnosis

One of our doctors will perform a comprehensive evaluation that begins with your medical history, a physical exam and blood work. You may need other testing such as X-rays, a CT scan or other tests to evaluate internal organs. You will be treated with medications that focus on your symptoms.

Treatments

There is no cure for scleroderma. Unlike other autoimmune diseases where one type of medication controls many of the symptoms, medications for scleroderma target specific symptoms or specific organs.

Medications

Treatments may include medications for:

• Skin, Lungs and Muscles: Medications which lower your immune system are used to treat the skin, the lung tissue (interstitial lung disease) and muscle weakness.
• Raynaud’s Phenomenon and Lungs: Medications that help open up blood vessels are used to treat tightening of the blood vessels in the fingers and the lungs (pulmonary hypertension).
• Gastrointestinal tract: Acid reducing medications are used to treat acid reflux (heart burn).  If the movement of the intestines is affected, medications that control diarrhea and constipation are prescribed.
• Kidneys: A particular blood pressure medicine called an angiotensin converting enzyme inhibitor (ACE inhibitor) is effective in treating scleroderma involvement of the kidney.

Lifestyle Management

• Physical Therapy and Occupational Therapy: Skin thickening can affect the range of motion of the joints. PT and OT can help prevent loss of motion and improve function. It may also help with muscle weakness. Learn more about UR Medicine Physical Therapy and UR Medicine Occupational Therapy.
• Healthy Eating: If the GI tract is involved, alterations in the types and amounts of foods you eat may be necessary.  For example, if you have acid reflux, avoiding certain foods and not eating before bedtime can help. In people with problems with digestion, smaller meals or avoidance of certain foods may be needed. Learn about our UR Medicine Improve Nutrition Program.
• Protection from the cold: People with Raynaud’s need to keep their body warm and protect their fingers and toes from the cold. Wearing multiple layers of clothing is important not only in winter but also in air conditioned rooms.
• Smoking Cessation: Smoking makes symptoms for people with scleroderma worse, especially if your lungs are involved. At UR Medicine our team of physicians, nurse practitioners and lifestyle counselors can help you develop a plan to quit. Learn more about the UR Medicine Stop Smoking Program.

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Our Providers

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UR Medicine Rheumatology Locations

Phone: (585) 486-0901
Fax: (585) 340-5399

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Clinical Research

Our researchers are studying ways to improve treatment and quality of life of people with scleroderma. You may wish to help others by participating in a clinical study while receiving the newest treatment available.

To learn about participating in a clinical trial, see our Clinical Trials and Research Studies or contact us at AIR_Research_info@urmc.rochester.edu.

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