This afternoon, Hospital for Special Surgery hosted a chat exclusively on Twitter about lupus & general health with S.L.E. Lupus Foundation & Alliance for Lupus Research in honor of Lupus Awareness Month. In case you missed it, below is a brief transcript of our experts’ answers.
Q1. For those who aren’t aware, can you tell us what lupus is?
Dr. Jane Salmon: Lupus is an autoimmune disease that affects many parts of the body, including joints, skin, kidneys, & the lungs.
Q2. What are the signs and symptoms of lupus?
Dr. Jane Salmon: Signs of lupus can differ and be mistaken for other diseases, which is why it’s called the “great imitator.” Symptoms can include a red rash or color change in the face, joint problems, unexplained fever, and swollen glands.
Q3. How is Lupus diagnosed? Is there a blood test that can identify & diagnose it?
Dr. David Fernandez: Lupus can present itself in many ways, so there isn’t one symptom by itself that is enough. We look for 11 different signs of lupus and at least 4 would need to be present to diagnose someone with lupus.
Dr. Jane Salmon: Certain lab tests can confirm the clinical diagnosis, but no lab test alone makes the diagnosis of lupus.
Q4. What medications should I avoid if I have lupus nephritis?
Dr. Jane Salmon: Some patients with lupus nephritis should avoid non-steroidal anti-inflammatory medication, like ibuprofen.
Dr. David Fernandez: Before taking supplemental medication, speak with your physician.
Q5. Is fibromyalgia usually part of lupus?
Dr. Michael Lockshin: The symptoms of both are almost the same. Some doctors use two names (lupus & fibromyalgia). Others just say lupus.
Q6. Is severe skin disease a common dual diagnosis with systemic lupus?
Dr. Michael Lockshin: Eighty percent of those diagnosed with lupus have rashes. Some are mild cases and some are severe.
Q7. How can lupus patients learn about (and participate in) clinical trials?
Dr. Michael Lockshin: Our team here at Hospital for Special Surgery would be glad to guide you! All you have to do is call 1-877-SLE-CURE.
Q8. Do you have ideas or tips for coping with lupus?
Emily Reiss: Diagnosis of lupus can be challenging. There are support groups available to connect you with others who have lupus. Our support groups at Hospital for Special Surgery help patients learn coping mechanisms to manage living with lupus.
To learn more about lupus, check out the following infographic presented by the Lupus and APS Center of Excellence at Hospital for Special Surgery:
Dr. Jane Salmon is the Co-Director of the Mary Kirkland Center for Lupus Research, Director of the Lupus and APS Center of Excellence, Director of the FOCIS Center of Excellence, and Director of the Lupus Registry and Repository. Dr. Salmon’s research has focused on elucidating mechanisms of tissue injury in lupus and other autoimmune diseases.
Dr. Michael Lockshin is the Director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery. He is the author of nearly 300 research papers, book chapters, and books, most on the topic of lupus, pregnancy, antiphospholipid syndrome and sex differences in disease.
Dr. David Fernandez is a Rheumatologist at Hospital for Special Surgery, with a clinical focus on the care of patients with lupus and myositis. He is actively involved in research, currently investigating the role of mitochondria as they relate to flares of disease in lupus patients.
Emily Reiss serves as the Rheumatology Social Worker for the Adult Rheumatology Division. She coordinates all social work related services for the Lupus Center, including assessments, interventions, and access to needed resources, as well as referring patients to HSS lupus support and education programs.