Your Lupus Questions Answered, Part I

Recently, Hospital for Special Surgery and SLE Lupus Foundation hosted a Facebook chat on Lupusand General Health. Participants asked many questions, but our room full of experts could only answer as much as they could during the one-hour live event. We will run a series on our experts answers. For our first installment, rheumatologist, Dr. Michael Lockshin, answers questions on medication and treatment.

The information provided is for informational and educational purposes, and does not 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 SLE Lupus Foundation.

Q1. Is it common for Sjogren’s to present itself as the primary issue in patients who typically have SLE as the primary disease? I was misdiagnosed with 3 different things, one of the chronic candida before they realized what it was. I was seriously malnourished from not being able to eat.

One of the things that doctors do not speak about very much is the overlap of several autoimmune diseases in the same patient. It is a problem that we are studying right now and hope to help other doctors understand. If the patient has one diagnosis, such as lupus, consider the possibility that a second, such as Sjogren’s, is also present.

Q2. I have been on a home health nurse for IV medications and also hospitalized 2 times since surgery due to not responding to any antibiotics being used. Is this common for SLE?

It is hard to tell without knowing the specifics. Infections in some parts of the body, for instance bones, are very hard to get rid of. Some types of infecting germs do not respond to antibiotics. People on high doses of immunosuppressive drugs cannot fight infection well. Any or all of these things may explain your problem. I would not call it common, but we certainly do see such problems in SLE patients.

Q3. If a patient has a positive ANA along with numerous symptoms and is diagnosed with SLE, but then later has a negative ANA, does this mean it is not lupus even though they are still experiencing lupus symptoms?

First, there are several ways to do an ANA test, and some are more prone to be falsely negative than are others. Second, the symptoms may be due to treatment of lupus rather than to the disease itself. To determine whether symptoms are due to lupus, it is necessary to put all of the available information together, not just the ANA.

Q4. As a 47 year old woman living with lupus for over 32 years, what are the questions I should be asking? The tests I should be taking? The signs and symptoms to notice?

Lupus causes many symptoms, so it is hard to give specific advice to any one person. Things that are common after many years are osteoporosis, particularly if you have taken steroids for any length of time. You can test osteoporosis with a bone density test. You will also want to know that your blood pressure is normal and that your urinalysis is normal. Most other things will cause symptoms.

Q5. How effective is low dose chemo in treating a flare?

There are several ways of answering this question. There is a lot of interest these days in using several chemo drugs simultaneously, each low dose, rather than one at a time in high dose. In England, rheumatologists use cyclophosphamide (Cytoxan) in smaller doses more frequently than we do in the United States, and it seems to work just as well either way.

Q6. I have lupus and my daughter has Hashimoto hypothyroid since the age of 9. At first, they thought it was lupus. Is there a chance she will develop lupus with her also having Arnold chiari malformation and scoliosis? When is there a proper time I should check for lupus?

Hashimoto thyroiditis is very common not only in lupus patients, but in families of lupus patients. By itself, it does not increase your daughter’s chance of developing lupus, which is about 1%. There is no point in testing her because most patients with Hashimoto have positive antinuclear antibodies. I would test her only if she develops symptoms. The chiari malformation and scoliosis are unfortunate, but are unrelated to either Hashimoto or lupus.

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