Your Lupus Questions Answered, Part II

Lupus Disease Concept as a Medical Condition

Hospital for Special Surgery and Lupus Foundation of America hosted a Facebook chat on Lupus and General Health. Below is a brief transcript on our experts answers. Read the first part of our Lupus chat 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 Lupus Foundation of America.

Q1. I have just been diagnosed with lupus a few months back, after years of testing. I am allergic to everything, and I have a very difficult time remembering that water is a requirement in life. I have been searching for a new primary care doctor, and it is very difficult to find someone who has experience treating lupus in my area. I have been suffering from extreme stiffness in my legs, forgetfulness, depression, anxiety, and fevers almost daily. How do you recommend searching for a good primary care doctor, and building that relationship with your doctor? Are there natural ways to help control my symptoms until I am treated and medicated? I have seen that kidney issues are an issue for people who suffer from lupus, so taking medication makes me nervous!

Dr. Kyriakos Kirou: Lupus nephritis may occur in up to 30-50% of patients that have severe lupus. This is not due to any medications, but just due to severe lupus. The way to tell is when someone develops leg swelling, along with abnormalities in the urine test such as too much protein or blood. This is easy to pick usually. You should look for a good primary care physician based on what you hear or other information from other patients. Then the primary care will refer you to a rheumatologist for further help. Most lupus patients need a rheumatologist to manage their disease.

Q2. I have SLE, was diagnosed 8 years ago. The worst part is the paralyzing fatigue. As a PTA and a mother of four I am very busy. But there are times the fatigue stops everything. Are there any recommendations for a med that can be added to help fight the fatigue? I take plaqenil and currently on prednisone due to recent pericarditis and pleurisy.

Dr. Lisa Sammaritano: Fatigue is a big problem for patients with lupus. Sometimes the fatigue persists even when active inflammation is under control. I usually recommend patients listen to their bodies and pace themselves, resting when necessary (not always easy with four children, I know!). Exercise may also be helpful – in moderation. There are some medications that have been used off-label for fatigue, but none that are approved for treatment of fatigue in lupus yet. You can discuss these with your rheumatologist to see if they might be safe for you to try (although often they are not covered by insurance plans for lupus fatigue). One example is modafinil.

Q3. What are some non-medication treatment options that you suggest lupus patients explore?

Monica Richey: You can certainly try acupuncture and physical therapy. Make sure you are being supervised by a trained professional on both options. Also healthy eating is super important. Make sure you have a balanced diet – almost similar to the Mediterranean diet, with plenty of fish, vegetables and fruits. Avoid fried food and sweets as they can increase inflammation in your body. Water (if you do not have kidney disease) is your best friend, avoid sodas and processed fruit juices as well.

Q4. Why is there not much information on tumid lupus?

Dr. Julie Zang: You are right, we more often hear about discoid lupus and systemic lupus. Tumid lupus is another type of cutaneous lupus that affects the dermis and superficial fat. It is a little less common. The other types of cutaneous lupus are lupus panniculitis (involving the fat) and subacute cutaneous lupus (very sensitive to the sun).

Q5. I wanted to know how to deal with recently testing positive on a ANA and DNA double strand? I was on sulfasalazine and now being told it may have elevated or skewed my test but after being off months. I still test positive. Is that possible? Or could it be that its actually is SLE?

Dr. Lisa Sammaritano: Positive DNA antibodies usually suggest a diagnosis of lupus, but you are right that some medications can cause a drug-induced lupus (or just lupus antibodies) and that these should go away after the drug is withdrawn. To understand the importance of the antibodies, it is important to know what clinical symptoms are present. If you do not have clinical symptoms that are consistent with lupus and just have the antibodies it is reasonable to wait a while longer before assuming that these are “true” autoantibodies.

Dr. Kyriakos Kirou is a physician-scientist in the field of academic rheumatology. Dr. Kirou is the Clinical Co-Director of the Mary Kirkland Center for Lupus Care.





Monica Richey, MSN, ANP-BC/GNP, serves as the nurse coordinator for both theMary 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.

Dr. Julie Zang serves as an attending dermatologist at Hospital for Special Surgery.


Dr. Lisa Sammaritano is a rheumatologist at Hospital for Special Surgery and has developed a clinical practice geared towards patients with Systemic Lupus Erythematosus (SLE) and Antiphospholipid Antibodies, and combines this with clinical and basic research in these areas.




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 *

  1. Hi my question is why would my rheumatologist say that I don’t have lupus anticoagulant when it shows up as positive on the blood work?

    1. Hi Rose, thank you for reaching out. Dr. Michael Lockshin, rheumatologist, says: “If the test is positive, you do have the lupus anticoagulant. However, maybe it is because of this: There is a screening test, which can be positive in a number of situations, and the confirming test, to prove that a positive screening test is a true positive. Perhaps your screening test is positive, but the confirming test is not? One of your doctors should be able to look at the tests and explain this to you.”

  2. In April 2015 I tested positive for the Lupus Antibody. I already have Antiphospholipid Syndrome and Protein S Deficiency. From what I have read and have been told, a positive does not necessarily mean I HAVE Lupus.
    Correct? If so, what are my chances of one day developing

    1. Hi LeRoy, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There are a number of antibody tests that one uses to diagnose lupus. The antinuclear antibody test (ANA) is a screening test. Almost everyone with lupus has a positive ANA, as do 10% of normal people over the age of 30, and about 30% of people with antiphospholipid antibody. If positive, it does not mean you will develop lupus. Tests that indicate lupus are anti-DNA antibody and anti-Sm (for Smith) antibody. They are sometimes positive in antiphospholipid antibody patients; if positive, they don’t mean you will develop lupus, but it is worthwhile noting and checking periodically (every few years) just to be sure. One of the antiphospholipid antibody tests is called ‘lupus anticoagulant.’ The name is a misnomer that comes from its history. If you have a lupus anticoagulant, it does not mean you have lupus. Tests that occur in many patients with autoimmune diseases are anti-SSA/Ro and anti-SSA/La. They are commonly positive. They merit a few extra questions about other symptoms, like rash or dry eyes or mouth, which can indicate other problems, but also do not mean you will develop lupus or any other disease. Before deciding that you have protein S deficiency, be sure that protein S was not tested while you were taking an anticoagulant, like warfarin or heparin. If it was tested while you took one of those drugs, it may not be correct.” It would be best to consult with your physician so that they can determine the best course of treatment. If you wish to seek consultation at Hospital for Special Surgery, please contact our Physician Referral Service at 1-800-796-0482 for further assistance.