Questions and Answers

What causes fatigue in Lupus?

What causes fatigue in Lupus? Fatigue is the most common complaint as well as one of the worst aspects for people with Lupus. Despite all of the information we know about Lupus, the cause of the fatigue is still unknown. Even with proper treatment, normal antibodies, and remission, fatigue can still persist. It can feel similar to a chronic case of flu.

Some scientists believe that fatigue is the body’s response to cytokines that are produced in many cells of the body. It is not known why the body responds this way, or what the cytokines do to cause the body to respond by being fatigued. Researchers continue to investigate these questions.

What can be done about fatigue?
There are no specific medical treatments currently that can relieve fatigue. There are several drugs in development that appear to have some success in battling fatigue.

Some people find relief with corticosteroids and others find treatment with newer drugs like anabolic steroids helpful. But fatigue is the body’s way of saying that it needs rest and rest may be the only thing that really helps.

Can Lupus be inherited?
There appears to be a genetic predisposition to developing Lupus as well as other autoimmune diseases, however Lupus is not considered a genetic disease in the classical sense.

Relatives of people with Lupus have a five to twelve percent greater tendency to get the disease if family members have it. Only five percent of children born to a parent with Lupus will actually develop Lupus.

Research shows that people with particular genetic tissue-types called human leukocyte antigen (HLA types) are more prone to develop Lupus than those are with other types.

How do I recognize a flare?
A flare is a sudden change of disease activity, for example, the development of new symptoms. Symptoms may include a feeling of weakness, low grade fever, joint and muscle aches, and the development of oral and nose ulcers.

Flares can take on many forms, indicating that the disease is quite active. A flare can last anywhere from a few days to several weeks. In some cases when a flare is particularly bad a course of immunosuppressive medications such as prednisone can terminate the flare. Flares are experienced differently by different people.

What can be done to deal with sun-sensitivity?
Always limit exposure to the sun as much as possible by shielding yourself from the sun’s rays. You may do this by wearing protective clothing such as long-sleeve shirts or dresses, gloves, and hats. Also always wear a sunscreen with at least a SPF of 15 to 30 and use sunscreen at all times.

The sun’s rays are especially intense during the hours from 10 a.m. to 4 p.m. Try to limit your exposure during those times. Overexposure to the sun can trigger a flare which can lead to joint pains, low-grade fever and fatigue.

What kind of doctor should I see for diagnosis and treatment of my Lupus?
Rheumatologists are the doctors who have special expertise and training in diagnosing and managing diseases of the musculoskeletal and immune systems

What are the concerns regarding pregnancy and Lupus?
Pregnancies in women with Lupus are considered high risk, but most women with Lupus can have a healthy baby following these guidelines:

1. Make sure your disease is under control prior to becoming pregnant (if the pregnancy is planned), and have your obstetrician/gynecologist carefully monitor your pregnancy with frequent exams, coagulation tests and blood sugar analyses.

2. Your rheumatologist should be involved on a regular basis with regular appointments and should be in communication with your OB/GYN. Generally, fertility is not affected. There is, however, a higher incidence of miscarriages associated with Lupus and pregnancy.

Can children get Lupus?
About 20-25 percent of all Lupus occurs in children. Lupus rarely develops under the age of five and only a small percentage of childhood Lupus begins between the ages of five and 10. Childhood Lupus most commonly has its onset during adolescence.

Girls get Lupus about three to seven times more often than boys do before the age of 10, and about nine times more often after puberty.

Do people with Lupus get many headaches?
Yes, and doctors aren’t sure why. Headaches could be the result of some hormone or vascular change. Many people with Lupus experience migraine headaches as well.

What is the prognosis for people with Lupus?
In general, the prognosis for people with Lupus is excellent. One’s lifespan should not be shortened because of Lupus. The prognosis for a person with Lupus, because of earlier diagnosis and more aggressive treatment, has improved significantly over the past 20 years. The major problem for people with Lupus occurs when the disease affects a major organ.

Lupus has such a female dominance, but can men get Lupus?
The answer is yes, with the sex ratio at nine females to one male. It is an uncommon disorder in men. Lupus appears to be similar in both males and females, as far as symptoms are concerned.

Are there social security benefits for people with Lupus?
Yes, Lupus is listed as an impairment under the social security laws. Extensive documentation is required by all your doctors and most of the time it is necessary to see an “impartial” physician. Many times people are denied benefits the first time they apply, and then proceed to win on appeal. Disability lawyers may need to be retained in some cases.

How can I keep up my appearance when I feel and look so bad?
Lupus can cause many physical changes that can make a person with Lupus feel quite unattractive. The Covermark and Dermablend line of cosmetics have been known to provide excellent coverage for hard-to-conceal rashes and blemishes as well as for stretch marks, and are sold in most department stores.

For women who experience hair loss associated with Lupus or the side effects of medication, there are inexpensive synthetic wigs available, as well as fashionable hats, turbans and scarves.

With steroid use can come unwanted and excessive facial hair. For very fine hair, bleaching may make the hair less noticeable. There are several commercial bleaches available that can be found in most drug stores or pharmacies. For dark hair you may want to consider using a depilatory (hair remover) which is sold over the counter at most drug stores. Waxing and electrolysis are also ways of removing unwanted hair.

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