On November 6, Hospital for Special Surgery and the S.L.E. Lupus Foundation 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 of our experts answers over the next month. For our fourth installment, rheumatologists Dr. Michael Lockshin, Dr. Kyriakos Kirou, Dr. Alana Levine, and Dr. Jane Salmon and rheumatology nurse practitioner Monica Richey answer questions about testing. Read the others in this series: medication, joint pain, and pregnancy.
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 the S.L.E. Lupus Foundation.
Q1. Is there another way to see if all the signs you have point towards lupus other than a blood test?
Dr. Michael Lockshin: The diagnosis of lupus is never made by blood test alone, since some people have positive blood tests but no disease. To make a diagnosis of lupus, you need to have both symptoms and, generally, positive blood tests. It is very rare for someone to have a diagnosis of lupus that has completely negative blood tests- not just one test but a whole panel of them. You can make a diagnosis of lupus on the basis of the skin rash or certain types of kidney disease even if blood tests are negative.
Q2. I was diagnosed with an overlapping connective tissue disease together with a spinal disorder, Hashimoto’s disease, Raynaud’s, endometriosis, polycystic disease, RA, and migraines to name a few. Will I ever have a negative ANA? Also, I still have no energy and bad pain (I am on a lot of medicine). If it wasn’t for ADD medication, I’d never get out of bed. This all worsened after my lower back was reconstructed.
Dr. Kyriakos Kirou: Once the ANA test is positive, it usually remains positive. Therefore, we do not retest for ANA once we have secured a diagnosis of lupus or a related connective tissue disease. Fatigue or low energy is one of the more difficult symptoms to control. Fatigue also may be due to co-existing fibromyalgia which needs a different treatment.
Q3. I have had 6 positive ANAs and some positive reactions on the lupus profiles and some negatives. My symptoms this year alone have been a slow heart rate that hospitalized me, orbital inflammatory disease with trace optic neuritis, extreme fatigue, hair loss, unexplained bruising, confusion, memory problems, pain in my hip, wrist, joints, and thumb knuckle, lung problems, urinary tract infections, and depression. I have been put on Plaquenil, Mobic, Cymbalta, pain meds, muscle relaxer, and Trazodone yet none of my specialists have yet said yes you have SLE. I now have a drooping eyelid on my left eye and the left side of my face feels different than the right just slightly. I am at wits end for someone just to say I’m not crazy. Not to mention I have lost 49 pounds in 6 months without trying.
Dr. Kyriakos Kirou: Unfortunately, the diagnosis of SLE may be difficult in cases that are not very typical for the disease such as in your case. The ANA test may be positive in other autoimmune conditions or even sometimes in normal people and therefore it may not be very helpful. A positive and relatively high level anti-DNA test is usually more specific for SLE compared to other autoimmune diseases.
Q4. Hi, I was diagnosed with Lupus and Sjogren’s 4 years ago. I have changed my rheumatologist in the past year. She just told me she believes I have Sjogren’s and Fibromyalgia. She says Sjogren’s is a close cousin of lupus. She does not know of my total medical history. My old doctor did have access to my tital medical history and was able to diagnose me with definitely having lupus. I did the lupus check online and I have almost all of the symptoms still. I also had a positive ANA for the past 4 years of multiple testing. I do not agree with her saying that I do not have lupus. I do not want my lupus symptoms to go untreated. What should I do?
Dr. Alana Levine: It sounds like your old and new rheumatologists have different opinions about what to call your autoimmune disease. I can see how this would be frustrating. Have you tried to explain your concerns to your new rheumatologist? It might be helpful to ask her why she feels you do not have lupus. Is it that your symptoms are now different now than in the past? Your new doctor may have a reason for her different opinion, or maybe, as you mentioned, she doesn’t have all of the information from your history that would help her to fully understand your case. A detailed discussion with your new doctor might clear up some of these issues.
Q5. My mother just passed away with Lupus and my uncle and my cousin also have lupus. I just had my first ANA that was speckled. My other previous ones had all been negative. I already have the ankles that swell constantly, the joint pain, the low blood counts, low D, low B12, and I’m throwing protein into the urine. The rheumatologists all say not lupus, but my family doctor says it’s the beginning stages. I’m confused. Are there any other tests I should have?
Dr. Alana Levine: I’m so sorry to hear about your mother’s passing. It does sound like you have a strong family history of lupus as well as some symptoms that can be seen in lupus patients. It can be very frustrating if your doctors have different opinions about what’s going on with you. Have you asked your doctors to speak to each other about why they have different views of your diagnosis? It would help if together the three of you could figure out what is causing all of these symptoms- whether it’s lupus or another condition.
Q6. I have many symptoms of SLE and RA, but my ANA came back negative. The rheumatologist told me that that means that I have neither based solely on that test. Is that true? Should I see a different rheumatologist to get a second opinion?
Dr. Jane Salmon: Most patients with SLE have positive ANA tests, but they rarely can be negative. There are also certain blood tests (rheumatoid factor and anti-CCP) that are positive in most patients with RA, but there are exceptions here too.
Q7. Is there a connection between having a low MPV and lupus? My platelet count is normal. Also, I have symptoms from low MPV, but the doctors aren?t treating it. A bone marrow biopsy has been recommended numerous times, but it has not been done. How serious is this?
Monica Richey: Are your platelet numbers also low? In some cases, it can be related to thrombocytopenia, which is also seen with SLE treatment for low platelet count is usually IVIG. A bone marrow would be a good thing to see if the low MPV is related to SLE, they can look at the cellular level and tell what the cause is, that way it can be treated properly.
*If you wish to seek consultation at HSS, please call our Physician Referral Service at 877-606-1555 for further assistance.*
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. Kyriakos Kirou is a rheumatologist at Hospital for Special Surgery and is Clinical Co-Director at the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. He has a special interest in the research and treatment of systemic autoimmune rheumatic diseases, such as systemic lupus erythematosus.
Dr. Alana B. 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.
Monica Richey, MSN, ANP-BC/GNP, serves as the nurse coordinator for both the Mary Kirkland Center for Lupus Care and the Cardiovascular Disease Prevention Program. Ms. Richey’s professional interests include cardiovascular disease in systemic autoimmune diseases and patient education.