Scleroderma Program

Overview

The Massachusetts General Hospital Scleroderma Program specializes in the care of patients with scleroderma and related fibrosing conditions. Led by Flavia Castelino, MD, the Scleroderma Program delivers state of the art multi-disciplinary care in the evaluation and treatment of patients with scleroderma and related conditions. We are committed to improving scleroderma patient care by developing better diagnostic and treatment options and performing innovative research to advance our understanding of what causes scleroderma.

What Is Scleroderma?

Scleroderma, or systemic sclerosis, is an autoimmune disease that affects the skin and internal organs, and can lead to thickening, or fibrosis. Scleroderma is a progressive disease that can produce complications ranging from mild to severe. Its two main forms are:

1. Localized scleroderma, which affects a local area of the skin (and is most often treated by dermatologists)
2. Systemic sclerosis, which can affect the skin, joints, blood vessels and internal organs

Our rheumatologists specialize in treating systemic sclerosis, the primary focus of our program. Symptoms of scleroderma vary from one person to the next, but some of the more common symptoms of scleroderma may include: skin thickening, pulmonary hypertension, scarring of the lungs leading to shortness of breath (called pulmonary fibrosis), problems of the gastrointestinal tract including heartburn or difficulty swallowing, fingers that become numb and pale when exposed to the cold (called Raynaud's phenomenon), and kidney problems.

About This Program

Our program is headquartered in the Yawkey Building on the Mass General main campus under the leadership of Dr. Flavia Castelino. Program physicians, Flavia Castelino, MD, Marcy Bolster, MD, and Sara Schoenfeld, MD will apply their clinical and research expertise in scleroderma to develop a personalized care plan for you. At your first appointment, you will undergo a complete medical history and physical examination. Your physician will look for key signs of scleroderma, such as skin thickening/hardening and blood-vessel irregularities. Your physician may also recommend blood tests or other diagnostic tests, such as pulmonary-function tests, imaging studies or an echocardiography.

Although there is currently no known cure for scleroderma, making an early diagnosis is important because it can prevent a mild case from becoming more severe, and it can give us a head start in treating other conditions that may develop, such as Raynaud's phenomenon, pulmonary hypertension and pulmonary fibrosis. In addition, there are a number of new treatment options available, and your doctor may recommend a trial of one of these medications.

A Personalized Treatment Plan

Your disease severity and extent of organ-system involvement will determine your prognosis and treatment plan.

Treatments may include:

• Immunosuppressive medications to control the body's immune response
• Non-steroidal anti-inflammatory medications to relieve joint pain
• Medications that treat specific symptoms of scleroderma, such as pulmonary hypertension, lung disease, heartburn or Raynaud's phenomenon
• Physical therapy and exercise to promote muscle strength and joint mobility

Most of our patients receive lifelong care at the MGH. We typically see patients with mild symptoms every three to six months and patients with more severe symptoms every one to three months. At each visit, you can expect to meet with your rheumatologist, who will then coordinate care with other specialists. If you do not live in the area, we can co-manage care with your local physician and see you as needed to monitor your health. At the MGH, we take a multi-disciplinary approach to managing a multi-system disease like scleroderma.

Multi-disciplinary Care

Depending on your symptoms, our rheumatologists will coordinate your treatment with other world-class specialists at MGH, including cardiologists, dermatologists, gastroenterologists, nephrologists and pulmonologists. We work closely with all of these specialties.  In particular, we collaborate with the Dermatology-Rheumatology Connective Tissue Disease Program where we see patients with scleroderma and other skin disorders that relate to autoimmune diseases. We also work closely with our colleagues in the Pulmonary and Critical Care Division who specialize in seeing patients with lung fibrosis and pulmonary hypertension (increased pressure in the lungs) that can also be part of scleroderma.

Promising Research Is Underway

Although there is no known cure for scleroderma, research in underway at the MGH to find therapies that will improve the quality of care for our patients.  Members of the MGH Rheumatology Unit work with scientists in the Center for Immunology and Inflammatory Diseases to better understand scleroderma and develop new treatments. In recent years, the MGH Rheumatology Unit and the Center for Immunology and Inflammatory Diseases have helped clarify the mechanisms underlying scleroderma. Flavia Castelino, MD previously collaborated with Andrew Tager, MD to study a new treatment (targeting the lipid mediator, lysophosphatidic acid (LPA)) for the lung and skin manifestations of scleroderma. This treatment is currently being studied in a clinical trial in patients with scleroderma. Moving forward, Dr. Castelino is leading efforts to host clinical trials that give patients access to promising novel therapies for scleroderma.

• Browse open clinical trials
• E-mail our Rheumatology Clinical Research Coordinator

Our Approach

We are committed to improving scleroderma patient care by developing better diagnostic and treatment options, and performing innovative research to advance our understanding of what causes scleroderma.