I know that many people, who have already been diagnosed with Lupus or think that their symptoms are an indication that they have lupus, have a lot of questions that either they don’t know to ask or are too shy to ask of their doctor.  I wanted to post this interview with a leading Lupus specialist, because I thought it was very insightful and may help to answer some of those questions.  This should not in anyway be used as a way to diagnose  or treat yourself without the proper medical tests and treatments that only your Rheumatologist or Internist can give you.  I do hope that this does helps.

Dr. Daniel Wallace is the author of the hugely successful ‘The Lupus Book‘, and is considered to be one of the world’s leading lupus specialists.

Q – A major problem for patients that suspect they may have lupus, is getting a diagnosis. What advice would you give to these patients, on the best route to take in order to get a diagnosis?

A – The best way to ascertain a diagnosis of lupus when it is suspected is to obtain a rheumatology consultation. Patients should not be shy about requesting this. If they do not look out for themselves, nobody else will.

Q – What are the main signs and symptoms you look for when considering a diagnosis of lupus?

A – Lupus is an inflammatory process, so we look for signs of inflammation. It may be present on examination with swollen joints, rashes, vasculitis, etc. Many times it is only present on laboratory testing such as a sedimentation rate, CRP, high anti DNA or low C3. Sometimes patients with prominent aching and concurrent fibromyalgia can have a lupus like process made clear by obtaining a bone scan. This imaging technique lights up the hands and feet in most lupus patients and provides evidence for inflammation. Fibromyalgia is a non-inflammmatory process.

Q – I often get emails from people who have negative blood tests (e.g. ANA, anti-ds DNA), and have therefore been told that they have not got lupus. What are your thoughts on this matter, does a negative test on one occasion necessarily mean that lupus can be ruled out?

A – ANA negative lupus is only seen in discoid lupus, antiphospholipid syndrome and patients who have had so much steroids or chemotherapy that their test becomes negative. Anti DNA is present in only half with lupus and is not definitive.
In the US, 97% with SLE are ANA positive using a Hep-2 substrate. However, in the UK and other countries, if other substrates are being used, up to 10% can be ANA negative. **see below

Q – Fatigue seems to be the most troublesome symptom for many lupus patients, do you have any suggestions on how it should be managed?

A – Inflammatory causes of fatigue such as interstitial lung disease, myocarditis, pleuritis, swollen joints, etc should be looked at. Lupus is associated with an anemia of chronic disease and 15% are hypothyroid. The treatment of fatigue from inflammation is anti-inflammatories. Substance abuse, alcoholism, use of excessive amounts of pain killers, malnutrition and depression are other causes of fatigue. If these tests are negative and the above circumstances do not apply, one should pace themselves with periods of activity alternating with periods of rest. Sometimes, antimalarials, particularly quinacrine,as well as DHEA, vitamin B12, serotonin boosters (e.g, Prozac) are used. Rarely, we employ ritalin or dexedrine.

Q – What dietary advice do you give to lupus patients? Are there any particular foods they should avoid, or eat more of? Do you advise on taking supplements of any kind (e.g. vitamins, herbs, etc)?

A – Lupus patients can eat whatever they wish, but I advise 2-3 fish meals a week (fish oil is mildly antiinflammatory) and the avoidance of alfalfa sprouts (seen in salads a lot in California but probably not a problem in the UK) which have an amino acid, L-canavanine, which flares lupus. Patients on steroids need to watch their carbohydrate and fat intake as well.

Q – Do you encourage lupus patients to exercise?

A – Exercises which improve general conditioning such as walking, swimming, bicycling, and low impact aerobics decrease the risk of muscle atrophy and osteoporosis. Range but do not exercise swollen joint. Patients with fibromyalgia should not weight lift, row, or play tennis, bowling or golf as it puts too much stress on the upper back or neck area.

Q – Here in the UK, the drug minocin (minocycline) has been implicated in drug-induced lupus. Yet in the US I believe it has been used to treat lupus. What are your thoughts on this matter, have you used minocin to treat lupus patients?

A – Minocycline can flare lupus and cause lupus. As a TIMP (tissue inhibitor of metalloproteinase), it also helps mild rheumatoid arthritis. It should be avoided in SLE.

Q – What do you anticipate for the future of lupus – do you expect a cure in the next decade, or maybe just more efficient drugs?

A – We are entering a new era where chemotherapies (which kill good cells as well as bad ones) are giving way to biologics (which target only what’s bad). A variety of biologics (LJP 394, anti CD40L, etc) are in clinical trials and these are exciting developments. 

More information about Dr. Wallace-

He is the author of 6 medical textbooks (including the last 4 editions of Dubois’ Lupus Erythematosus, All About Fibromyalgia, The Lupus Book, All About Osteoarthritis, The New Sjogren’s Syndrome Handbook, and Fibromyalgia & Other Central Pain Syndromes), 19 book chapters, and over 250 medical publications. The latter have appeared in the New England Journal of Medicine, Annals of Internal Medicine, the Lancet, Journal of Clinical Investigation, Journal of Immunology, and Journal of the American Medical Association.

Wallace’s academic efforts include having served as Chief of Rheumatology at Cedars-SinaiMedicalCenter, Century City Hospital, and the City of Hope Medical Center in Duarte, CA. He is currently a Clinical Professor of Medicine at the David Geffen School of Medicine at UCLA. His clinical practice is based at Cedars-Sinai, where he is involved in the care of 2,000 lupus patients, the largest practice of its kind in the United States. The Wallace Rheumatic Disease Research Center currently runs over 30 clinical trials for patients with rheumatoid arthritis, lupus, ankylosing spondylitis, psoriatic arthritis and fibromyalgia. The center has been the recipient of 3 National Institute of Health grants. 20% of his time is spent in teaching and research, providing free medical care.

Dr. Wallace’s volunteer work has entailed serving as Chairman of the Lupus Foundation of America, the Research and Education Foundation of the American College of Rheumatology, and on the Board of Directors of the United Scleroderma Foundation, the Lupus Research Institute and the American Society for Apheresis. He has served on the Medical Advisory Board of the Sjogren’s Syndrome Foundation and the American Fibromyalgia Syndrome Association. His service has been recognized by being named as among the 200 best doctors in the nation by Town and Country Magazine, best doctors in Los Angeles by Los Angeles Magazine, Best Doctors in America editions since 1994. Dr. Wallace is the recipient of the Lupus Foundation of America Humanitarian Award, Achievement award of the Lupus Research Institute, Spirit Award of the Scleroderma Foundation and the Jane Wyman Humanitarian Award of the Arthritis Foundation. His efforts have raised over $10 million for various rheumatic disease organizations.