Overview
Scleroderma means “hard skin.” In systemic sclerosis, the immune system and blood vessels are involved, leading to thickened skin and, in some people, scarring of internal organs such as the lungs, kidneys, heart and digestive tract.
Treatment is tailored to which organs are involved and focuses on symptom control and organ protection.
Watch and learn
Video: “Scleroderma - Disease Introduction | Johns Hopkins” from Johns Hopkins Rheumatology on YouTube. It loads from youtube-nocookie.com only when you press play. Shown for general education; GSMC did not produce it. Watch on YouTube
Video: “Signs and Symptoms of Scleroderma | Johns Hopkins” from Johns Hopkins Rheumatology on YouTube. It loads from youtube-nocookie.com only when you press play. Shown for general education; GSMC did not produce it. Watch on YouTube
Captions: press the CC button in the video player to turn on captions. Some captions are generated automatically by YouTube and may contain errors.
Symptoms
- Raynaud’s phenomenon: fingers turning white or blue in the cold
- Thickening and tightening of the skin of the fingers, hands or face
- Puffy fingers
- Heartburn or trouble swallowing
- Shortness of breath
- Joint pain and stiffness
Causes and risk factors
- Autoimmune, with blood vessel and connective tissue changes
- Cause not fully known; genetic and environmental factors
- More common in women
How it is diagnosed
- Blood tests: ANA, anti-centromere, anti-Scl-70 (topoisomerase) and anti-RNA polymerase III antibodies
- Nailfold capillaroscopy to look at small blood vessels
- Lung function tests and chest CT; echocardiogram to check for pulmonary hypertension
Treatment, step by step
Treatment is tailored to you. Medicines are described here in general terms; your rheumatologist will explain the specific options, benefits, risks and monitoring for your situation.
Lifestyle and self-care
Keeping hands and body warm, skin care, not smoking and regular stretching may help.
Disease-modifying medicines (DMARDs and biologics)
Medicines are chosen by organ involvement, such as immunosuppressants for skin or lung disease and blood vessel medicines for Raynaud’s.
Joint injections and infusions
Some treatments are given by infusion. Infusions are currently given at a partner hospital; in-office infusions at GSMC are planned. Call 732-202-3000 for details.
Referral and team care
Care often includes pulmonology, cardiology, gastroenterology and hand therapy.
What to expect at GSMC
- Your first visit: a rheumatologist reviews your symptoms, history and medicines and examines your joints, skin and other areas.
- Tests: blood tests and imaging, as needed, to confirm the diagnosis and check how active the disease is.
- Your plan: we explain your options, including lifestyle steps and medicines, and how each is monitored.
- Follow-up: regular visits and lab checks to adjust treatment over time.
Shahzad Hussain, MD sees rheumatology patients in Brick, Toms River and Whiting. Call 732-202-3000 to schedule.
Frequently asked questions
Is scleroderma the same for everyone?
No. Some forms mainly affect the skin; others involve internal organs. Your tests help define your type.
What helps Raynaud’s?
Staying warm, avoiding smoking and, when needed, medicines that open blood vessels.
How often are lungs checked?
Your rheumatologist will set a schedule for lung testing, often yearly or more.
This page is general patient education and does not replace advice from your own clinician. Individual results vary.