Your Scleroderma Questions, Answered is a monthly 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 answers questions about recognizing signs of organ involvement and understanding how scleroderma tends to progress over time.
Question: What signs suggest that organ involvement may be developing?
Answer: Scleroderma can sometimes affect internal organs, so it is important for patients to be aware of possible warning signs. Many of these changes begin very gradually and subtly, so it is important for patients to pay close attention to even small changes in how they feel, as these can be the earliest signs that an organ is being affected. This is why regular and routine check-ups are a vital part of scleroderma care.
Two of the most significant areas to watch are the lungs and kidneys. If a patient notices increasing breathlessness when walking or doing everyday activities, a persistent dry cough, or swelling in the ankles and legs, this could suggest the lungs or heart are being affected. A sudden rise in blood pressure, headaches, or a noticeable drop in how much urine is being passed may signal that the kidneys are under stress. The digestive system can also be affected over time. Worsening heartburn or acid reflux that is hard to control, difficulty swallowing food, feeling full very quickly after eating, or unintended weight loss can all be signs that the gut is involved. While these symptoms can feel less alarming to patients than breathing or kidney problems, it is still important that they are reported to the healthcare team, as there are treatments that can help.
If a patient notices any changes or feels that something is getting worse, they should always let their specialist team know promptly. Early detection of organ involvement gives the best chance of managing it effectively and protecting long-term health.
Question: How does scleroderma typically progress, and can progression be predicted?
Answer: Scleroderma can follow different paths. In some patients, it progresses rapidly, particularly in the first few years, and carries a higher risk of internal organs being affected. In other patients, the disease progresses slowly, if at all, and many patients remain stable for long periods.
Whether progression can be predicted is not straightforward, as scleroderma behaves differently in each person. However, certain blood tests, known as autoantibodies, can give useful information about which organs may be at more risk. Autoantibodies are proteins produced by the immune system that can act as markers for how the disease might behave. Most patients with scleroderma will test positive for one of a small number of specific autoantibodies. For example, the patients who test positive for the anti-Scl-70 antibody tend to be at a higher risk of lung scarring, while testing positive for the anti-centromere antibody is associated with a slightly increased chance of developing high blood pressure in the lungs. It is very important to understand, though, that having one of these autoantibodies does not mean that a patient will develop any particular symptom. They are only indicators of an increased risk.
Right now, it is not possible to reliably predict exactly how scleroderma will progress in any individual patient, which is why regular monitoring and check-ups remain essential throughout the course of the disease.
