Lupus site(SLE)- information on systemic lupus

The Lupus Site Exclusive - Interview with Daniel Wallace, M.D.

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.

Thank you Dr Wallace.

** Since I first printed this article, I've had a few emails from people concerned about what Dr Wallace said about negative ANA tests and lupus.

This sis a quote from 'The Lupus Book', written by Dr Wallace -

"Until 1985, 10 percent of all lupus patients had a negative ANA test. The introduction of improved testing material for performing the ANA test has decreased this percentage to 3 percent. Between 1980 and 1989, my office treated 464 patients who fulfilled the criteria for lupus; seventeen of them were ANA-negative. In analyzing this group, we found that patients fell into four basic categories. One-third had antiphospholipid antibodies and one-third had biopsy-documented kidney lupus. Of the remaining third, half ultimately became ANA-positive. The last group had advanced disease; prolonged treatment with steroids and chemotherapy made their ANA disappear. A variety of rarer causes of ANA-negative lupus exist, such as presence of anti-Ro (SSA) antibody without ANA."

More info on the ANA test...

Another source of information on the ANA test is - http://www.nationaljewish.org/medfacts/systemic.html (Scroll down to Laboratory Tests)

Lupus Site - a guide for lupus patients and their families

Interview with Daniel Wallace, M.D.