Conditions
Systemic sclerosis (scleroderma)
A long-term autoimmune disease that thickens the skin and can affect blood vessels and organs such as the lungs, heart and kidneys.
About Systemic sclerosis
Systemic sclerosis, also called scleroderma, is a long-term autoimmune disease. It causes inflammation and thickening of the skin, and it can also affect blood vessels and internal organs such as the heart, lungs and kidneys. Signs can include fingers or toes that turn white, blue or red in the cold or with stress (called Raynaud's), puffy fingers, tight skin on the fingers and hands, and sores on the fingertips.
Most people see a rheumatologist for care, often along with skin, lung, heart and kidney specialists. Tests can include a physical exam, blood tests for certain antibodies, a close look at the tiny blood vessels at the base of the nails, breathing tests, a heart ultrasound, and sometimes a chest CT scan or a skin biopsy.
Doctors may also look at published classification criteria, which were written to group patients for research studies. A diagnosis is a clinician's judgment. Before a visit, it can help to record color changes in your fingers or toes (with photos), tight skin or fingertip sores, when each symptom started, and past test results.
Who usually evaluates it: Most people see a rheumatologist, often along with skin, lung, heart and kidney specialists.
What you can record in Selihc Health
- Fingers or toes that change color in the cold or with stress, with photos
- Puffy fingers, tight skin, fingertip sores or small pits, with photos
- Small red spots on the hands, face, lips or inside the mouth, with photos
- Past antibody results, and reports from nailfold, lung or heart tests
What only a clinician can do
- A skin exam of the fingers, hands and other areas
- Looking at the tiny blood vessels at the base of the nails
- Breathing tests, heart tests and scans, and reading them
- Checking for other conditions that cause similar skin changes
In an emergency
Call 911 right away for chest pain, pressure or tightness; trouble breathing, or coughing up blood; sudden weakness or numbness in the face, an arm or a leg; sudden confusion, trouble speaking, or a sudden, very bad headache; sudden trouble seeing, walking or keeping your balance; a seizure that lasts more than 5 minutes, a first seizure, or trouble breathing or waking up after a seizure; or fainting with no waking up within a minute. If you are thinking about hurting yourself, call or text 988 any time. If you are in danger now, call 911. This list does not cover every emergency. If something feels seriously wrong, call 911.
Go to an emergency room or call 911 right away for a sudden, very bad headache or blurry vision; a very high blood pressure reading together with a headache, blurry vision, shortness of breath, nausea or vomiting; new or quickly worsening shortness of breath; or a pounding or racing heartbeat that comes with any of these signs. Get care the same day (call your clinician or go to urgent care) for a fingertip sore that becomes much more painful, red, hot or swollen.
The published criteria
Your summary organizes your records against these sources, for your clinician to review. What clinicians see
Systemic sclerosis: 2013 ACR/EULAR classification criteria
van den Hoogen F, Khanna D, Fransen J, et al. 2013 classification criteria for systemic sclerosis: an American College of Rheumatology/European League Against Rheumatism collaborative initiative. Arthritis Rheum. 2013;65(11):2737-2747. doi:10.1002/art.38098
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This page is general information written for patients, not medical advice. Content is a draft awaiting clinical review.
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