Lupus Chat Recap, Part I

4.2 Blog

Recently, Hospital for Special Surgery and Alliance for Lupus Research hosted a Facebook chat on Lupus and General Health. Participants asked many questions, and in the upcoming weeks, we will run a series on our experts answers.

The information provided is for informational and educational purposes, and doesn’t constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of the HSS interdisciplinary team or Alliance for Lupus Research.

Q1. What happens if the heart becomes bigger? My doctor says that it is possible.

Dr. Alana Levine: Different parts of the heart can be involved in lupus. I’m not sure exactly what your doctor is referring to, but the heart may appear bigger on x-ray if there is fluid surrounding it, such as with a pericardial effusion. The chambers of the heart may also become bigger, or dilated, if the heart valves are damage. Your doctor may refer you to a cardiologist if there is a concern about your heart or its function.

Q2. How does Lupus cause autonomic dysfunction (in its various forms) and why is it active even when a patient is in remission?

Dr. Michael Lockshin: Autonomic dysfunction does occur in lupus patients, but it’s always hard to tell if it is due to lupus as opposed to occurring coincidentally in a patient with lupus. It generally does not respond to treatment for lupus and often stays when a patient is in remission. If it is due to lupus, it most likely stays because the autonomic nerves have been permanently damaged and can’t recover.

Q3. Is there a specific diet that you could recommend for SLE lupus? Not as much for weight loss as for healthy eating and energy?

Dr. Jane Salmon: There is no specific diet for lupus patients. Given that patients with lupus are at risk for heart disease, it is important to eat a heart healthy diet- as recommended by the American Heart Association.

Q4. I am being told that SLE is not hereditary yet my grandmother had SLE. It is dispersed throughout the family. My father was diagnosed as possible TB and my sister is diagnosed with FM but suffers from the same symptoms that I have. I am diagnosed with SLE. Is there any proof that SLE can be passed down to family members?

Dr. Alana Levine: We do know that lupus is slightly more common in family members of lupus patients or patients with other autoimmune diseases. There is no specific test to determine what the risk of inheriting lupus would be. I do not recommend that family members or children get tested unless they have symptoms.

Q5. What is the outlook with regard to current research for women with lupus nephritis and a history of cyclophosphamide therapy who would like to have biological children?

Dr. Jane Salmon: There are many options to preserve fertility in patients who are about to receive Cytoxan. The risk to fertility is related to the age of the patient at the time she is treated. There are tests now available to assess ovarian reserve. Be sure to consult with your OBGYN and rheumatologist for pre-pregnancy counseling.

Q6. I have some neurological side effects of lupus and neurologists don’t know how to treat them properly, what studies can I read or participate in that might help me keep informed about the neurological side effects of lupus?

Dr. Michael Lockshin: There are a lot of different kinds of neurological symptoms that a lupus patient can have. The Hospital for Special Surgery website has a special section on this problem. Big clinics that specialize in lupus know best how to treat these, sometimes together with neurologists, but not always.

Michael D. Lockshin, M.D., is 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. Alana Levine is a rheumatologist at Hospital for Special Surgery. She specializes in rheumatic autoimmune diseases including systemic lupus erythematosus, antiphospholipid syndrome, undifferentiated connective tissue disease and rheumatoid arthritis.








Dr. Jane Salmon is Co-Director of the Mary Kirkland Center for Lupus Research, Director of the SLE 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. Her basic and clinical studies have expanded our understanding of pregnancy loss and organ damage in SLE and the determinants of disease outcome in lupus patients with nephritis, pregnancy, and cardiovascular disease.

The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.

Leave a Reply

Your email address will not be published. Required fields are marked *