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. Read the first installment of our recap series here.
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 resources are available for teens with Lupus?
Melissa Flores: We have support and education programs for teens and young adults with lupus and their families through the Charla de Lupus (Lupus Chat) Program. We provide both over-the-phone support and in-person support at HSS. We also have a Teen, Young Adult, and Parent Support Group, which takes place monthly. To learn more, give us a call on our Charla Line: (212)-606-1958 or (866)-812-4494 if you are outside of NYC.
Q2. What are the professionals? opinions on staying drug free for as long as possible?
The answer to this question really depends on a patient’s symptoms. There are certain situations in which medications are medically necessary, like for lupus involving the organs. If lupus symptoms are very mild or not organ-threatening, patients may not need medications at all. You should always discuss medication options with your doctor.
Q3. What are the similarities and differences between erythromelalgia and Raynaud’s?
Dr. Joanna Harp: Raynaud’s is more distal. The finger tips color change of red, white, blue and is worse with cold. Erythromelalgia is more burning red pain that lasts longer as it is typically worse with heat and improved with cold.
Q4. If all blood tests come out negative, but the individual still has all other symptoms associated with lupus, can you still have lupus or the definitive diagnosis is solely determined by blood tests?
Lupus is diagnosed by combining a patient’s symptoms, physical exam findings, and lab tests. While not 100%, almost all patients do have a positive antinuclear antibody (ANA). Rarely, there are cases in which the ANA is negative, but other symptoms and findings would have to be very convincing for a diagnosis to be made.
Q5. My rheumatologists advise me to avoid any hectic lifestyle, which is hard for me as a resident, is it true? I’m also preparing for pregnancy. What medications are acceptable? Is it safe to take a lot of nutritional supplements?
Dr. Jane Salmon: It’s most important when preparing for pregnancy to conceive at a time when lupus is quiescent, with no nephritis, no active organ involvement, and on low doses of steroids. Plaquenil is often used in pregnancy and seems to be helpful. Other than Imuran, immunosuppressive drugs are contraindicated. In terms of your hectic lifestyle: rest when you can, but continue your residency.
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.
Dr. Joanna Harp serves as an attending dermatologist at Hospital for Special Surgery. She specializes in complex medical dermatology and skin disorders related to internal disease.
Melissa Flores is the Coordinator of Social Work Programs at Hospital for Special Surgery.