Recently Hospital for Special Surgery hosted a Facebook chat on Lupus & General Health with S.L.E Lupus Foundation, Alliance for Lupus Research & Lupus Research Institute. Below is a brief transcript of 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, S.L.E Lupus Foundation, Alliance for Lupus Research, or Lupus Research Institute.
Q1: What do you recommend for years of sleepless nights?
Dr. Michael Lockshin: Regarding sleepless nights, first ask whether you can identify a reason–pain, coffee before bedtime, medications you are taking, breathing problems. There are specialist doctors who do very detailed evaluations for insomnia.
Q2: Any suggestions on dealing with brain fog?
Dr. Michael Lockshin: First, review your medications. Some add to brain fog. Then ask if your disease is under optimum control. If not, treat it. Is your thyroid gland OK? Low function can cause brain fog. Talk to your doctor: do you need to be evaluated further, for instance with a brain MRI? An abnormality might change your treatment plan. If none of the above is true, and you still have brain fog, you can consider using drugs like modafinil or similar stimulants. There are also brain function training programs, usually administered by psychologists. For everyone it’s a bit different, but there are things you can do.
Q3: As a patient with Lupus I can sometimes reduce symptoms and manage my condition with proper nutrition, exercise and alternative therapies are there any special diets or foods that you suggest?
Dr. Doruk Erkan says: The most important recommendation is to have a healthy diet for cardiovascular disease prevention. It is important to note that lupus patients, compared to the general population, are at higher risk for cardiovascular disease, e.g., stroke, heart attacks.
Q4: Is it common for SLE to cause liver issues?
Dr. Doruk Erkan: Yes, SLE can cause liver problems. However, especially in the presence fibrosis, other diseases should be excluded. Please discuss with your rheumatologist and gastroenterologist.
Q5: Is there anything that can be taken for serious pain? My shoulders and hips are terrible. I am also on high doses of prednisone 20 mg a day.
Dr. Jane Salmon: It is important to determine whether you have inflammation in your hips and shoulders before deciding on a treatment. About the prednisone, if you require such does to keep your lupus from flaring, you and your rheumatologist can discuss steroid-sparring medications to add to your medical regimen-as you slowly taper your prednisone.
Q6: I was prescribed Imuran and taken off Plaquenil for severe joint pain and inflammation. I have seen no improvement in 3 months in my symptoms. I seem to be getting worse and still work full time. Is there another treatment that I should talk to my rheumatologist about?
Dr. Jane Salmon: There are a number of potential therapies you might try, but the selection of which must be tailored to your medical condition. I cannot make a specific recommendation, only say that you should be hopeful and persevere until you and your rheumatologist find a treatment plan that works for you.
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. Doruk Erkan is a Rheumatologist at Hospital for Special Surgery. In addition to his rheumatology practice, Dr. Erkan has a long-standing research interest in Antiphospholipid Syndrome and Systemic Lupus Erythematosus.
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.