By Daniel Wallace
WebMD Live Events Transcript
The Lupus Foundation of America estimates that 500,000 to 1.5 million Americans have been diagnosed with lupus and more than 16,000 Americans develop lupus each year. If you or someone you love suffers from lupus, get the facts about diagnosis and treatment from Daniel Wallace, MD, author of *The Lupus Book.*
The opinions expressed herein are the guest's alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD Live. Joining us now is Daniel Wallace, MD, author of The Lupus Book.
Member: How is lupus connected to the autonomic nervous system?
Member: How common are hives (severe) as a precursor to, or indicator of, lupus?
Wallace: They are uncommon but found in about 5% to 10%.
Member: I am expecting and currently in remission. When I conceived I was very ill, what can I expect after delivery?
Wallace: Most pregnant patients get a little better during the second and third trimesters because the placenta, baby, and the mom all have cortisone. After delivery, there is often a flair, which sometimes needs to be treated with anti-inflammatory medicine.
Member: What specific tests do you look for first when diagnosing lupus and which ones do you think are the most important to monitor after diagnosis?
Wallace: In screening for lupus we do an ANA, if the ANA is negative it's unlikely it's lupus. If the ANA is positive then we do additional tests, which include anti-DNA compliments, and an anti-DNA panel.
If we have active lupus that is being monitored we often monitor it with sedimentation rates, anti-DNA C-3 compliments, C-3, C reactive protein.
Member: So if someone has a negative ANA, then in your opinion they do not have Lupus?
Wallace: Most patients with ANA-negative lupus have either skin lupus only (discoid) or they have had extensive steroids and chemotherapy.
Member: Dr. Wallace what is the connection, if any, between lupus and fibromyalgia?
Wallace: Twenty to 30% of people with lupus have fibromyalgia. It's seen in lupus patients who are on steroids or have under-treated disease.
Member: What can I do to ease the daily fatigue?
Member: I am ANA-negative and have been for almost two years, I fulfill eight out of 11 criteria; will I ever be ANA-positive?
Wallace: ANA's can become negative with very high doses of steroids or chemotherapy and may never become positive.
Member: There seem to be several clinical trials related to lupus. Do you think that there are any that are more promising? What suggestions would you have for people considering these trials?
Wallace: The only trial ongoing for mild disease is DHEA. The trials for serious disease are for people have not responded to steroids and chemotherapy and I do recommend them.
Member: I do not take prednisone. Will I be more likely to have major organ failure in the future or will it matter that much?
Wallace: Half of all lupus patients have organ-threatening disease. It almost impossible to predict who falls in this group and the use of steroids to prevent this is controversial.
Member: For negative DNA, is it true there is less chance of developing organ involvement?
Member: At what age does lupus begin?
Wallace: It can begin as early as a year old and it can present in 90-year-olds.
Member: I have been on prednisone since I was diagnosed two years ago. My doctor recently slowly lowered me to 4, but I couldn't handle it. I was wondering -- he doesn't think I will ever be off. Shouldn't I try to be off prednisone just for a while? I did have problems with my lungs when I went to 4.
Wallace: It depends how inflamed and active the disease is.
Wallace: A third of lupus patients have no skin involvement.
Member: Why do some doctors still seem to think lupus is non-existent?
Wallace: I don't know any doctors that think that way.
Member: How common is it for pleurisy to "cure"? I have had pleuritis for two weeks now and am taking 60 mg of prednisone for seven days. Just now I am feeling a bit better. Is this length of healing time common?
Wallace: Pleurisy takes weeks to months to go away, but usually does go away.
Member: Do you see a cure for lupus in the future? If so, what kind of timeline do you think we will see? Also, how can we help that to happen?
Wallace: I see about 10 to 20 new therapies for lupus becoming available in the next 10 years. You can help to make it happen to become a part of your local support groups, like the Lupus Foundation of America, the Arthritis Foundation, and the Lupus Research Institute.
Member: I hear some people actually go into remission. What do you consider "remission"?
Wallace: Remission means you have a positive ANA. There's still evidence of the disease but there is no activity.
Member: For long-term Vioxx treatment, what are concerns/side-effects?
Wallace: The kidney, liver, and blood counts need to monitored every three to four months; as long as they are OK the drug can be used indefinitely.
Member: Any new numbers or thoughts out about the hereditary factor with lupus?
Wallace: Ten percent of all daughters of lupus patients get lupus; 2% of sons. There are 20 to 30 lupus genes in the body.
Member: Any treatment for what we call "brainfog" -- that confused condition so many of us have?
Wallace: Biofeedback, cognitive behavior therapy, anti-malarials, serotonin boosters have all been helpful.
Member: Would debilitating joint pain and fatigue ever warrant treatment more aggressive than Plaquenil and prednisone?
Wallace: There's no way to do it.
Wallace: Seizures happen in 5% to 10% of patients. Strokes can be seen in especially those with phospholipid antibodies.
Member: Do you see a connection between lupus and hormone imbalance?
Wallace: Female hormones may make lupus worse; male hormones may make lupus better. That is an over-generalization, but it's a concept.
Member: Your biography says you have treated 2,000 lupus patients; what percentage of those would you estimate had an initial ANA negative, which was positive at a later testing date?
Wallace: Two to 3%.
Member: Why are muscle aches mainly in upper legs and upper arms?
Wallace: Proximal muscles in lupus get inflamed, preferentially.
Wallace: Proliferative nephritis warrants Cytoxan in nearly all cases.
Member: Is there any info on the duration/prognosis of neuropathy caused by joint inflammation? Does it eventually go away when the joints improve, or are the nerves permanently damaged?
Wallace: Nerve neuropathy is rarely associated with joint involvement unless the joint is so swollen that is presses on the nerve as in carpal tunnel syndrome.
Member: Is there much said about lupus being triggered by environment?
Wallace: There have been reports that alfalfa sprouts can trigger lupus, certain chemicals used in the manufacturing of drugs can trigger lupus, permanent wave hair treatments, immunizations, aromatic amines have all be linked to lupus.
Member: What percentage of UCTD patients goes on to develop lupus, and is it a better outcome (i.e., milder) the longer it takes?
Wallace: The answer is 20% and the length of time makes no difference.
Member: Can you talk more about some of the new treatments being developed?
Wallace: There are six to seven biologics in clinical trials; they include antibodies to compliment DNA in different types of white blood cells. None is expected to get approved in the next year.
Member: What other antibody tests can initially be negative, only to later become positive?
Wallace: Any of them.
Member: Isn't prednisone bad for the heart? If a lupus patient is on it for a long time what are the chances of heart problems?
Member: What percentage of lupus patients also has RA?
Wallace: One to 2%.
Member: It seems as though I get tremors in the arms at times. Would they be lupus-related or from prednisone?
Wallace: Probably from prednisone.
Member: Is it fair to say that positive ANA is indicative of autoimmune disease, and we must look to other symptoms to decide which autoimmune disease should be diagnosed?
Wallace: Only 10% of people with ANA have lupus, only 30% with ANA have autoimmune disease. Over two-thirds with ANA have no autoimmune disease.
Member: What advice do you have for those with negative ANA but more than half or two-thirds of criteria for diagnosis?
Wallace: That is extremely unusual and they should be evaluated by a rheumatologist that uses a university specialty-based lab.
Member: What is considered a high ANA?
Wallace: There is no standardization of ANA. They are done by five different methods.
Member: What, in your opinion, is the likely culprit in peripheral nerve involvement? Do you think lupus attacks the nerve or the blood supply to the nerve?
Wallace: It can do either and peripheral neuritis is seen in 10% to 15% of people with lupus.
Member: Are there any alternative medications or treatments that you have found to be useful in treating lupus?
Wallace: No alternative medicines have been shown in any controlled medical trials to be effective. However, mind-body techniques such as biofeedback, cognitive/behavioral therapy, hypnosis, aromatherapy, and visual imagery have been useful for some.
Member: How is lupus related to one's diet?
Wallace: Alfalfa sprouts can flair lupus; fish oil may be helpful. Lupus patients on steroids need to watch their salt and fat intakes.
Member: I have been diagnosed but my blood counts are usually normal. Are blood problems always seen in lupus?
Wallace: Lupus is diagnosed on the basis of the ACR criteria. Only three of the 11 are laboratory; one can have lupus with normal lab tests if they fail the criteria.
Member: What are treatment options if NSAIDs caused ulcers?
Wallace: Alternatives to NSAIDs include topical NSAIDs given locally to painful areas. These include Ben-Gay, Aspercream, or Ketoprofen Gel.
Member: I know it is extremely unpredictable but if lupus starts out as "mild" does it usually stay that way for the majority?
Wallace: Half with lupus have non-organ threatening disease. Twenty percent of those evolve into organ-threatening disease, 80% do not.
Member: What would you say are the three or four most important things you can do to ensure successful lupus treatment?
Wallace: Patient compliance, good doctor-patient relationships, access to knowledgeable physicians 24 hours a day, and a well-educated patient.
Member: A lot of patients get sick (colds, etc.) easily. Is it possible to have lupus, and not be prone to illness?
Member: Why do some lupus patients seem to be sensitive to sulfa drugs?
Wallace: Twenty percent are sensitive to sulfa drugs because they sensitize the skin when it is exposed to sunlight.
Member: What precautions should be taken during pregnancy if you have a vague "lupus-like symptoms" diagnosis?
Wallace: Tylenol for mild symptoms and steroids for significant symptoms are used during pregnancy.
Member: Why should someone taking steroid watch his or her salt and fat intake?
Wallace: Steroids raise cholesterol and cause the body to retain salt.
Member: Would you recommend that all lupus patients try therapy with plaquenil or other antimalarials?
Wallace: Yes, for non-organ threatening disease. For organ threatening disease they are usually beyond plaquenil.
Moderator: Unfortunately, Dr. Wallace has to run. Thanks for joining us members, and thanks to Daniel Wallace, MD, for being our guest. For more information on lupus, be sure to pick up Dr. Wallace's book, The Lupus Book. Also, please visit WebMD's lupus condition center, message boards and read our archived transcripts on this subject in our Live Event Archive. Goodbye and good health!
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