From early symptoms to ongoing care, questions about living with scleroderma don’t stop after diagnosis.
Your Scleroderma Questions, Answered is a Q&A column featuring responses from the SRF’s Chief Medical Officer, Dr. Gregory Gordon, who shares guidance grounded in decades of clinical expertise.
In this edition, he addresses questions about how doctors determine when scleroderma begins and the routine screenings used to monitor health over time.
Q: How do doctors determine how long scleroderma has been active in a patient?
A: For many people, the first symptom is Raynaud’s phenomenon, where fingers turn white or blue and may feel painful when exposed to cold temperatures or stress. Raynaud’s can begin months or even years before other signs of scleroderma appear. However, Raynaud’s is common and does not automatically mean someone has scleroderma. In fact. most people with Raynaud’s never go on to develop the disease. Because of this, doctors usually do not suspect scleroderma when Raynaud’s appears by itself.
Doctors typically start to evaluate for scleroderma when additional symptoms develop, such as thickening or tightening of the skin, ongoing digestive problems (like reflux or trouble swallowing) or shortness of breath. At that point, they may order blood tests, imaging studies, and other exams to confirm the diagnosis.
Since scleroderma develops gradually, there is no exact “start date.” In practice, doctors consider the disease to have started when the first symptom other than Raynaud’s appeared. This is the most useful clinical definition. For many patients, this is when they first noticed persistent skin thickening.
Q: What routine screenings should someone with scleroderma have — and how often?
A: Scleroderma can affect different parts of the body, so monitoring is an important part of care. The exact testing schedule is individualized and depends on how long someone has had the disease and whether any organs are involved.
For someone newly diagnosed and without known organ involvement, doctors usually start by establishing a baseline. This often includes evaluating the lungs (pulmonary function tests or a CT scan) heart (echocardiogram) and kidneys (blood pressure checks and blood work).
After the baseline evaluation, doctors continue routine follow-up to watch for changes. This will be individualized, informed by those baseline results. At a minimum, in addition to routine blood work, rheumatologists ask about new symptoms and perform detailed physical exams at each visit. Subtle changes in breathing, skin thickening, swallowing, or blood pressure can provide early clues that something needs further attention.
And of course, people with scleroderma should still receive routine preventive care just like anyone else — such as cholesterol checks, diabetes screening and cancer screenings. Conditions like diabetes or high cholesterol are not caused by scleroderma, but can occur and should be monitored and managed as part of overall health care.
