Making the Most of Your Scleroderma Doctor Visit
Be Prepared for Your Appointment
Knowledge is power—and being prepared for your appointment helps you take an active role in your own care. Keeping track of your symptoms, understanding your diagnosis, and asking the right questions can help you and your healthcare team make informed decisions together.
Know Your Scleroderma Subtype
Ask your doctor whether you have limited or diffuse systemic sclerosis. Your subtype can help predict the course of your disease and guides how your health is monitored.
Know Your Antibody
Ask which scleroderma antibody you have. Common antibodies include:
- Anticentromere
- Anti-Scl-70
- RNA Polymerase III
These antibodies can help your healthcare team understand which body systems to monitor over time.
Make Sure Your Baseline Testing Is Complete
Your doctor may recommend several tests to check for organ involvement, including:
- High-resolution CT scan
- Pulmonary function tests
- Echocardiogram
- Electrocardiogram (EKG)
These tests can detect complications before symptoms develop. A chest X-ray alone is not enough to rule out lung involvement.
Keep Track of Your Symptoms
Consider keeping a symptom diary between appointments. Tell your doctor about any new or worsening symptoms, including:
- Shortness of breath
- Skin changes
- Raynaud’s attacks
- Joint pain
- Reflux
Your healthcare team may recommend additional testing if your symptoms change.
Ask Questions
You may want to ask your doctor:
- Do I need additional screening tests?
- Am I a candidate for immunosuppressive treatment?
- Should I consider participating in a clinical trial?
- Are there patient assistance programs available for my medications?
Open communication can help ensure your care plan meets your individual needs.
How to Advocate for Yourself — Making the Most of Your Doctor’s Visits (2023)
Learn how to advocate more effectively for yourself or a loved one and make the most of medical visits while living with scleroderma.