Lupus Questions
Arthritis Today Medical Experts Answer Your Questions About Lupus
One of the most popular features in Arthritis Today, "On Call" finds answers to your most puzzling arthritis questions by asking a variety of healthcare experts. Just click on the question or title you'd like to see.
Is Facial Rash Related to Lupus?
Lupus-Related Nail Loss?
Helping Friends Understand Lupus
Side Effects of Inhaled Steroids
It's Lupus, Not Laziness
Is Facial Rash Related to Lupus?
Q: I have arthritis, plus a rash across my nose and cheeks. My doctor is treating me for acne, but I wonder if what I have is actually a rash related to lupus. Several members of my family, including my sister and daughter, have lupus. Is it possible that I also have lupus -- even though the results of my laboratory tests are negative?
A: Arthritis and a facial rash are just two of the many features of lupus your doctor may take into account when making a diagnosis. Other features of lupus include a positive antinuclear antibody (ANA) test, abnormal blood- cell counts, pleurisy (inflammation of the lining of the lungs), pericarditis (inflammation of the membrane sac surrounding the heart), and evidence of kidney injury. Because you have family members with lupus, it is understandable that you are concerned about your own diagnosis. Indeed, the risk of lupus is increased among family members of those with the disease. On the other hand, it is entirely possible -- even likely -- that your facial rash and arthritis have occurred together by coincidence.
Unless you have other signs of the disease, including positive lab tests, I would assume that you don't have lupus. I would recommend that you trust your doctor, who has examined you and is familiar with your specific symptoms. If you are still uncertain and would like another opinion, I would suggest you consider seeing a rheumatologist.
Doyt Conn, MD, Rheumatologist
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Lupus-Related Nail Loss?
Q: Since being diagnosed with lupus I have lost three fingernails. Could this be an effect of the disease or the medications I take for it?
A: A variety of strange things can happen to both the fingernails and toenails of people with lupus. The most common problem, by far, is red, thickened and painful cuticles. Changes in the appearance of the nails themselves can include small pits or ridges on the nails' surfaces and red streaks or white lines under the nails. Further, drugs such as hydroxychloroquine (Plaquenil) or cyclophosphamide used to treat lupus can cause color changes in the nails.
Losing the entire fingernail in lupus is quite unusual, but may result from one of several causes. In patients with discoid lupus (a form that produces scarring lesions of the skin), lesions on the nail bed could lead to nail loss. Other rare processes that could lead to loss of nails might include fungal infections of the nails, which are more common in people taking immunosuppressive drugs, or severe Raynaud's phenomenon in which circulation to the nails would be affected.
I would recommend speaking to your doctor about this problem. If a fungal infection is the cause, appropriate drug therapy can treat the problem and promote growth of new, healthy nails. On the other hand, if discoid lupus is the cause, there is probably little chance that your lost nails will grow back.
John Klippel, MD, Rheumatologist
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Helping Friends Understand Lupus
Q. I have lupus, two kids and a part-time job. It has taken me a long time to figure out a schedule I can manage with my pain and fatigue. Yet, my co-workers, friends and family expect more from me than I can give. What should I do?
A. You are wise to recognize your own limitations and seek advice for taking care of your own well-being. Perhaps the best strategy to use when trying to enlist the support and understanding of others is to educate them.
You and your doctor know that lupus is a difficult disease to cope with, and that treatment can cause additional physical symptoms. Your co-workers, friends, and family apparently do not understand how lupus affects you – perhaps because you don't have visible symptoms.
Consider talking with some of the people who are closest to you about your lupus and the challenges it presents. You might take along one or two of the brochures offered by the Arthritis Foundation. (Contact your local chapter [or visit Your Arthritis Store] and request Managing Your Activities or Managing Your Fatigue.)
By helping them overcome their ignorance, you will likely find you receive better understanding and cooperation. But remember, you come first. Don't let friends or family bully you into doing more than you're able. If you're not good to yourself, you can't expect others to be.
Kristofer Hagglund, PhD, Psychologist
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Side Effects of Inhaled Steroids
Q. Having taken glucocorticoid medications for lupus, I live with the fear of osteoporosis. Now I have learned that my 6-year-old daughter has asthma and will have to take inhaled steroids. Will this put her at risk of osteoporosis as well?
A Glucocorticoids are powerful and beneficial medicines used for reducing the inflammation of many conditions, including lupus and asthma. For systemic diseases like lupus, glucocorticoids are typically taken orally. For asthma, inhaled glucocorticoids deliver the medication directly to the inflamed airways.
Glucocorticoid medications are associated with a number of possible side effects, including osteoporosis, regardless of how they are administered. But it appears that inhaled glucocorticoids present minimal risks – particularly if used for short periods of time and/or in small doses.
When prescribing inhaled glucocorticoids, doctors start therapy with high doses and then decrease the dose to the lowest one that is effective. The side effects of glucocorticoids administered in this way are usually insignificant when compared to the dangers (including irreversible damage to the airways and even death) of untreated asthma.
Your doctor should work with you and your daughter to assess the need for inhaled glucocorticoids and the lowest dosage that will treat her condition properly.
You can also help by teaching your daughter about the importance of good nutrition and calcium-containing foods, even at her young age. Calcium is especially important for growing bones and to reduce the risk of osteoporosis later in life, whether she’s taking glucocorticoids or not.
C. Tim Lambert, MD, Family Practitioner
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It's Lupus, Not Laziness
Q: I was diagnosed with lupus three years ago and, since then, have not felt like doing much — including keeping up with my full-time job, tending to my 5-year-old son, cleaning the house or having sex with my husband. My husband criticizes me for being lazy and losing interest in him. Is it typical to feel so miserable with this disease? Is there anything I can do to feel better or to, at least, let my husband know I'm not just lazy?
A: Believe it or not, your situation isn't unusual. I have observed a lot of people with lupus who occasionally experience the pattern of fatigue, depressed mood, stress, family conflict and loss of sexual interest. Virtually all people with the disease — even those with milder forms — experience fatigue or loss of energy.
Fortunately, there are several steps you can take to improve your life.
Talk to your doctor. Tell your doctor about your entire situation, including your fatigue and sexual disinterest. Some of it may be due to treatment side effects and may be medically correctable.
Follow your treatment plan. Often, the best way to minimize your fatigue is to get your disease under better control. That means taking medications as your doctor prescribes, doing prescribed exercises and practicing energy-conserving techniques.
Ask for help. Allow yourself to ask for help with responsibilities. For example, at home, get a babysitter to occasionally help with your son, hire a housekeeper or someone else to cook. At work, explain your fatigue to your boss and request help with some of your duties.
Seek counseling. Don't hesitate to get help from a psychiatrist, psychologist or other counseling professional who is trained to help people cope with depression or marital disharmony.
Involve your husband. Ask for help clearly, and then precisely explain what you need done. Ask your husband to get your medicines for you. If possible, have him accompany you to doctors' appointments, attend a lupus self-help course with you or read lupus materials. By treating lupus as a common enemy faced by your marital "team," you can achieve greater intimacy with your husband.
Plan for intimate activities. Take pain-relief medication immediately before those activities. Use stretching and/or a warm bath to relax muscles. Learn different sexual/touching techniques that are less fatiguing.
Take time for yourself. Finally, take time for rest and for enjoyable activities as well. Avoid the pitfalls of false martyrdom, self-pity, escapism, guilt, anger or overeating.
Accept what you can't change. You must accept that you will generally have less energy than you had before lupus. Life can be most rewarding when we concentrate on a few of the gifts that life provides us rather than by grasping for more.
Richard Maisiak, PhD, MSPH, Psychologist and Epidemiologist
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