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Your Lupus Questions Answered, Part I

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Recently, in honor of Lupus Awareness Month, 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.

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 was just diagnosed with SLE and I’m struggling with the topic of sun exposure having just recently ended up in the hospital for 2 days with no diagnosis. I think it was a flare possibly caused by UV overexposure.

Dr. Julie Zang: Two thirds of lupus patients have photosensitivity including not only to ultraviolet light but also artificial fluorescent light. Light can induce skin rashes or general sense of itching, stinging and burning; about one third of patients can have systemic symptoms, such as fatigue, headache, weakness and joint pain from light exposure. I would recommend wearing sunscreen religiously. Zinc and titanium based sunscreens are physical sun blocks and protect against ultraviolet and visible light. I would wear sunscreen and re-apply it throughout the day. It is an easy practice and can avoid some complications of SLE.

Q2. Is there any connection between Lupus and hormones/endocrinology?

Dr. Michael Lockshin: Although 90% of lupus patients are women and researchers have looked at estrogen as an explanation, there is no proof or agreement that estrogen is the cause of the female nature of the disease. Many women feel that their symptoms vary with the menstrual cycle, but this is more likely due to changes in fluid retention in, for instance, inflamed joints, and not due to actual changes in disease activity. There is an association between lupus and small milk discharge from the breasts (galactorrhea), which is due to the fact that many lupus patients have too much of the milk-producing hormone prolactin. It is generally harmless when this occurs.

Q3. I have just been diagnosed with Lupus. I am allergic to everything, and I have a very difficult time remembering that water is a requirement in my 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, they will refer you to a rheumatologist for further help. Most lupus patients need a rheumatologist to manage their disease.

Q4. I have SLE. 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 plaquenil 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.

Q5. I was diagnosed with Factor V Leiden with protein C deficiency 10 years ago. This year, I was diagnosed with SLE. Is there a connection with my Factor V and lupus? Could they have found the lupus earlier knowing of my Factor V? Also, will I likely have to be on blood thinners for the rest of my life?

Dr. Michael Lockshin: There is no connection between Factor V Leiden and lupus and protein C deficiency and lupus. There is a connection between lupus and antiphospholipid antibody, which is more likely to cause clotting. Most people with Factor V Leiden and/or protein C do not have to take blood thinners. They do only if they have started to form blood clots. If that is the case, depending on the specific circumstances, you may have to take those medications for life.

Q6. What can I do to boost my energy level? I have SLE and Rheumatoid Arthritis.

Usually when your disease is well controlled, your energy returns. Exercise can definitely boost your energy and decrease your fatigue. There are a few supplements that can help with that, but you should check with your physician first to see if you can take them. B vitamins and L-carnitine are all good examples of supplements that can help.

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

Dr. Michael Lockshin, rheumatologistMichael D. Lockshin, M.D., 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, rheumatologistDr. 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

Dr. Lisa Sammaritano, rheumatologistDr. 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.

Eugene Tomkiel, LCSW-R, serves as the Social Work Manager for the Adult Rheumatology Division. He oversees social work services and promotes the integration of care for lupus patients by collaborating with Rheumatology physicians, supervising the social work staff and participating in lupus research initiatives.

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.