In February, Hospital for Special Surgery, Molly’s Fund Fighting for Lupus, and Alliance for Lupus Research hosted a Facebook chat on Lupus and General Health. Participants asked many questions, but our room full of experts could only answer as much as they could during the one-hour live event. We categorized the remaining questions, and will run a series on our experts answers over the next month. For our third installment, Rheumatologists Dr. Jane Salmon and Dr. Michael Lockshin, Dermatologist Dr. Joanna Harp, and Rheumatology Social Worker Emily Reiss answer questions on co-occurring conditions and social work.
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, Molly’s Fund Fighting Lupus, or Alliance for Lupus Research.
Co-Occurring Conditions
Q1. Can lupus be a factor in a child developing a learning disability like autism if the mother has SLE at the time of the pregnancy?
Dr. Salmon: Some studies were interpreted as showing that mothers with lupus are more likely to have children with autism, but they are controversial, not definitive and the risks may not be above that of patients with lupus.
Q2. Genetically, is it possible that one child will too end up with lupus or some type of autoimmune disorder?
Dr. Salmon: Although there are genetic risks for lupus and autoimmunity, there are also environmental contributors. Families may have members with lupus, diabetes, rheumatoid arthritis or other autoimmune diseases. Importantly, the risk of lupus in children of mothers with lupus is very low.
Q3. How long after stopping Benlysta can you start to have kids?
Dr. Lockshin: There are two possible answers to this question. First, the drug is mostly out of your body by one month, so, to be safe, 2 months after the last infusion should be safe. The other answer, however, speaks to the question how soon will lupus flare up after you stop the drug (if it will flare up). It may take several (3-6) months to see if the disease will stay stable or not. Pregnancy is safest if the disease is quiet.
Q4. Why does your menstrual cycle set off flares and colds?
Dr. Salmon: It is not clear what triggers lupus flares or how changes in hormone levels influence lupus activity. Some research studies have probed this area and we are making progress, but answers are not yet available.
Q5. Can having large fibroids trigger a flare up during that time of the month?
Dr. Lockshin: Over the years, there has been a lot of discussion whether lupus is worse during that time of the month. Most, but not all, people who have asked this question say that the disease itself is not worse, but bloating and other things make you feel worse. Large fibroids cause more pain and more blood loss, but themselves do not trigger flare ups.
Q6. Can discoid lupus cause or lead to dermatomyositis?
Dr. Harp: Discoid lupus cannot cause dermatomyositis. Some patients have an overlap between lupus (with discoid lupus on their skin) and dermatomyositis typically called undifferentiated connective tissue disease or mixed connective tissue disease.
Social Work
Q1. Between the severe joint and muscle pain, stinging and being extremely tired, how is a person supposed to have a normal life? Rest is good, but what happens when no rest due to mentioned symptoms stop the rest or you’re just too tired to rest as if your body wants to shut down.
Emily Reiss: It can be very hard to feel like you can lead a normal life when you have lupus. It is important to talk to your doctor about your symptoms and concerns to keep an open dialogue.
Q2. I have had lupus and Chiari malformation for 10 years and I guess it is finally getting the best out of me. I have multiple symptoms and I’m unsure if they are due to lupus or chiari malformation: numbness on my face and lips, restless nights due to numbness and tingling of my arms and hands just to name a few. How close or are we even close on finding a cure for lupus? Lupus has literally taken my life away.
Emily Reiss: It is important to remember that you are not alone. Talking with others with lupus that have gone through, or are going through, similar symptoms and feelings as you can be helpful. Hospital for Special Surgery offers a number of disease-specific support and education programs and resources: https://hss.edu/lupus-programs.asp.
Q3. I have 6 of the 11 criteria, but have been told for 5 years that I had lupus-like symptoms. Meanwhile, I’ve never had a negative ANA, anti-DNA came back positive on several occasions as well as anti-CCP (was diagnosed with RA) until I started Plaquenil. I’ve been sick most of my life with UTI’s, migraines, allergic to the cold at age 19, spinal disorder (arthritis in my spine), respiratory problems, neuropathy, hypothyroidism/Hashimoto’s disease, and had my lower back reconstructed. I’ve also been on disability. It is very frustrating. I just want to live as best as I can.
Dr. Lockshin: I’ve seen a lot of patients, and I know how frustrating it can be. A proportion of patients had overlap symptoms- not just lupus, but also features of rheumatoid arthritis, and sometimes of scleroderma or dermatomyositis. Different doctors use different terms to describe such patients: overlap syndrome, mixed connective tissue disease, undifferentiated connective tissue disease, Rhupus, and others. To have an overlap type illness doesn’t make you any less ill. It’s just harder to discuss. Generally, we treat according to the symptoms rather than the label lupus or not lupus. Not everything you describe fits into the world of lupus. The back surgery, for instance, may be something different. Perhaps you can sit down with your doctor and go over your symptoms one by one to hear what he or she says about whether it is due to the lupus (lupus-like) illness and what is not, and perhaps the different symptoms (or at least the ones that are worst right now) can be more specifically treated.
Q4. I see the lupus Illinois chapter offers help with insurance and/or treatment. Are there any programs available that can assist others if they are in need of assistance?
Emily Reiss: Yes! There are many disease-specific organizations, both nationally and state by state, that offer support and resources to patients.
Q5. How come rheumatologists don’t spent more time talking to patients about nutrition and the role it plays in the treatment of lupus? Specifically educating patients about the anti-inflammatory diet and how using it can lessen symptoms, flares, or even bring patients into remission.
Dr. Lockshin: I wish we all had enough time to discuss nutrition and many other things. I can’t speak for every doctor, but likely fever or kidney failure would be higher priority. Your point is valid though. At the Hospital for Special Surgery, we have a special program, run by a nurse practitioner, for our patients. It covers nutrition, cardiovascular risk, pregnancy, and contraceptive counseling, and will also address bone health.
Read the previous posts in this series: treatment and neurology, medication.
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. Michael D. Lockshin, 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. 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.
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.
