About Hood Family books and systemic lupus erythematosus (SLE) anddiscoid lupus

What is lupus?

Lupus is a condition of chronic inflammation caused by an autoimmune disease. Autoimmune diseases are illnesses which occur when the body's tissues are attacked by its own immune system. The immune system is a complex system within the body that is designed to fight infectious agents, for example, bacteria, and other foreign invaders. One of the mechanisms that the immune system uses to fight infections is the production of antibodies. Patients with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. When only the skin is involved, the condition is called discoid lupus. When internal organs are involved, the condition is called systemic lupus erythematosus (SLE).

Both discoid and systemic lupus are more common in women than men (about eight times more common). The disease can affect all ages but most commonly begins from age 20 to 45 years. It is more frequent in African-Americans and people of Chinese and Japanese descent.

What causes lupus?

The precise reason for the abnormal autoimmunity that causes lupus is not known. Inherited genes, viruses, ultraviolet light, and drugs may all play some role. Genetic factors increase the tendency of developing autoimmune diseases, and autoimmune diseases such as lupus, rheumatoid arthritis , and immune thyroid disorders are more common among relatives of patients with lupus than the general population. Some scientists believe that the immune system in lupus is more easily stimulated by external factors like viruses or ultraviolet light. Sometimes, symptoms of lupus can be precipitated or aggravated by only a brief period of sun exposure.

Dozens of medications have been reported to trigger SLE; however, more than 90% of this "drug-induced lupus" occurs as a side effect of one of the following six drugs: hydralazine (used forhigh blood pressure), quinidine and procainamide (used for abnormal heart rhythm), phenytoin (used forepilepsy), isoniazide (used fortuberculosis), d- penicillamine (used for rheumatoid arthritis). These drugs are known to stimulate the immune system and cause SLE. Fortunately, drug-induced SLE is infrequent (accounting for less than 5% of SLE among all patients with SLE) and usually resolves when the medications are discontinued.

It also is known that some women with SLE can experience worsening of their symptoms prior to their menstrual periods. This phenomenon, together with the female predominance of SLE, suggest that female hormones play an important role in the expression of SLE. This hormonal relationship is an active area of ongoing study by scientists.

Recent research provides direct evidence that a key enzyme's failure to dispose of dying cells contributes to SLE. The enzyme, DNase1, normally eliminates what is called "garbage DNA" and other cellular debris by chopping them into tiny fragments for easier disposal. The researchers turned off the DNase1 gene in mice. The mice appeared healthy at birth but after 6-8 months, the majority of mice without DNase1 showed signs of SLE. Thus, a genetic mutation that disrupts the body's cellular waste disposal may be involved in the beginning of SLE.

What are the symptoms of lupus?

In discoid lupus, only the skin is involved. The skin rash in discoid lupus often is found on the face and scalp. It usually is red and may have raised borders. Discoid lupus rashes are usually painless and do not itch, but scarring can cause permanent hair loss. Over time, 5 to 10% of patients with discoid lupus may develop SLE.

Patients with SLE can develop different combinations of symptoms and organ involvement. Common complaints and symptoms include fatigue, low-grade fever, loss of appetite, muscle aches, arthritis, ulcers of the mouth and nose, facial rash ("butterfly rash"), unusual sensitivity to sunlight (photosensitivity), inflammation of the lining that surrounds the lung (pleuritis) and the heart (pericarditis), and poor circulation to the fingers and toes with cold exposure (Raynaud's phenomenon).

More serious organ involvement with inflammation occurs in the brain, liver, and kidney. White blood cells and blood clotting factors also can be decreased in SLE, thereby increasing the risk of infection and bleeding.

Over half of the patients with SLE develop a characteristic red, flat facial rash over the bridge of their nose. Because of its shape, it is frequently referred to as the "butterfly rash" of SLE. The rash is painless and does not itch. The facial rash, along with inflammation in other organs, can be precipitated or worsened by exposure to sunlight, a condition called photosensitivity. This photosensitivity can be accompanied by worsening of inflammation throughout the body, called a "flare" of disease.

Systemic Lupus Erythematosus
(SLE or Lupus)

Most patients with SLE will develop arthritis during the course of their illness. Arthritis in SLE commonly involves swelling, pain, stiffness, and even deformity of the small joints of the hands, wrists, and feet. Sometimes, the arthritis of SLE can mimic that of rheumatoid arthritis (another autoimmune disease).

Inflammation of muscles (myositis) can cause muscle pain and weakness.

Inflammation of blood vessels, (vasculitis) that supply oxygen to tissues, can cause isolated injury to a nerve, the skin, or an internal organ. The blood vessels are composed of arteries that pass oxygen-rich blood to the tissues of the body and veins which return oxygen-depleted blood from the tissues to the lungs. Vasculitis is characterized by inflammation with damage to the walls of various blood vessels. The damage blocks the circulation of blood through the vessels and can cause injury to the tissues that the vessels supply.

Inflammation of the lining of the lungs (pleuritis) and of the heart (pericarditis) can cause sharp chest pain. The chest pain is aggravated by coughing, deep breathing, and certain changes in body position. The heart muscle itself rarely can become inflamed (carditis). It has also been shown that young women with SLE have a significantly increased risk of heart attacks from coronary artery disease.

Kidney inflammation in SLE can cause leakage of protein into the urine, fluid retention, high blood pressure, and even kidney failure. With kidney failure, machines are needed to cleanse the blood of accumulated poisons in a process called dialysis.

Involvement of the brain can cause personality changes, thought disorders (psychosis), seizures, and even coma. Damage to nerves can cause numbness, tingling, and weakness of the involved body parts or extremities. Brain involvement is called cerebritis.

Many patients with SLE experience hair loss (alopecia). Often, this occurs simultaneously with an increase in the activity of their disease.

Some patients with SLE have Raynaud's phenomenon. In these patients, the blood supply to the fingers and toes becomes interrupted upon exposeure to cold, causing blanching, bluish discoloration, and pain in the exposed fingers and toes.

How is lupus diagnosed?

Since patients with SLE can have a wide variety of symptoms and different combinations of organ involvement, no single test establishes the diagnosis of systemic lupus. To help doctors improve the accuracy of the diagnosis of SLE, eleven criteria were established by the American Rheumatism Association. These eleven criteria are closely related to the symptoms discussed above. Some patients suspected of having SLE may never develop enough criteria for a definite diagnosis. Other patients accumulate enough criteria only after months or years of observation. When a person has four or more of these criteria, the diagnosis of SLE is strongly suggested. Nevertheless, the diagnosis of SLE may be made in some settings in patients with only a few of these classical criteria. Of these patients, a number may later develop other criteria, but many never do.

The eleven criteria used for diagnosing systemic lupus erythematosus are:

malar (over the cheeks of the face) "butterfly" rash
discoid skin rash: patchy redness that can cause scarring
photosensitivity: skin rash in reaction to sunlight exposure
mucus membrane ulcers: ulcers of the lining of the mouth, nose or throat
arthritis: 2 or more swollen, tender joints of the extremities
pleuritis/pericarditis: inflammation of the lining tissue around the heart or lungs, usually associated with chest pain with breathing
kidney abnormalities: abnormal amounts of urine protein or clumps of cellular elements called casts
brain irritation: manifested by seizures (convulsions) and/or psychosis
blood count abnormalities: low counts of white or red blood cells, or platelets
immunologic disorder: abnormal immune tests include anti-DNA or anti-Sm (Smith) antibodies, falsely positive blood test for syphilis, anticardiolipin antibodies, lupus anticoagulant, or positive LE prep test
antinuclear antibody: positive ANA antibody testing

In addition to the eleven criteria, other tests can be helpful in evaluating patients with SLE to determine the severity of organ involvement. These include routine testing of the blood to detect inflammation (for example, a test called the sedimentation rate), blood chemistry testing, direct analysis of internal body fluids, and tissue biopsies. Abnormalities in body fluids and tissue samples (kidney, skin, and nerve biopsies) can further support the diagnosis of SLE. The appropriate test procedures are selected for the patient individually by the doctor.

How is systemic lupus treated?

There is no permanent cure for SLE. The goal of treatment is to relieve symptoms and protect organs by decreasing inflammation and/or the level of autoimmune activity in the body. Many patients with mild symptoms may need no treatment or only intermittent courses of antiinflammatory medications. Those with more serious illness involving damage to internal organ(s) may require high doses of corticosteroids in combination with other medications that suppress the body's immune system.

Patients with SLE need more rest during periods of active disease. Researchers have reported that poor sleep quality was a significant factor in developing fatigue in patients with SLE. These reports emphasize the importance for patients and physicians to address sleep quality and the effect of underlying depression, lack of exercise, and self-care coping strategies on overall health. During these periods, carefully prescribed exercise is still important to maintain muscle tone and range of motion in the joints.

Nonsteroidal antiinflammatory drugs (NSAIDs) are helpful in reducing inflammation and pain in muscles, joints, and other tissues. Examples of NSAIDs include aspirin, ibuprofen (Motrin), naproxen (Naprosyn), and sulindac (Clinoril). Since the individual response to NSAIDs varies among patients, it is common for a doctor to try different NSAIDs to find the most effective one with the fewest side effects. The most common side effects are stomach upset, abdominal pain, ulcers, and even ulcer bleeding. NSAIDs are usually taken with food to reduce side effects. Sometimes, medications that prevent ulcers while taking NSAIDs, such as misoprostol (Cytotec), are given simultaneously.

Additional Resources

National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
NIAMS/National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
(301) 495-4484 or (877) 22-NIAMS (226-4267)(free of charge)
Fax: (301) 718-6366
TTY: (301) 565-2966
World Wide Web address: www.niams.nih.gov/

The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. The clearinghouse provides information on lupus. Fact sheets, additional information, and research updates can also be found on the NIAMS Web site at www.niams.nih.gov.

Clinicaltrials.gov

The Department of Health and Human Services' National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and members of the public current information about clinical research studies. You can search for trials by disease, location, treatment, or by funding organization at the Web site clinicaltrials.gov.

American College of Rheumatology
Association of Rheumatology Health Professionals
1800 Century Place, Suite 250
Atlanta, GA 30345
(404) 633-3777
Fax: (404) 633-1870
www.rheumatology.org

The American College of Rheumatology (ACR) is an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles. The Association of Rheumatology Health Professionals, a division of ACR, aims to enhance the knowledge and skills of rheumatology health professionals and to promote their involvement in rheumatology research, education, and quality patient care. The association also works to advance and promote basic and continuing education in rheumatology for health professionals who provide care to people with rheumatic diseases.

Alliance for Lupus Research, Inc.
28 West 44th Street, Suite 1217
New York, NY 10036
(212) 218-2840
(800) 867-1743 (free of charge)
www.lupusresearch.org

The Alliance for Lupus Research, Inc. (ALR), is a nonprofit organization devoted exclusively to the support of promising research for the prevention, treatment, and cure of lupus. Through accelerated, focused, goal-oriented research programs, the ALR aims to promote basic and clinical sciences to achieve major advances leading to a better understanding of the causes of lupus.

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
East Detroit, MI 48021-2227
(586) 776-3900
(800) 598-4668 (free of charge)
E-mail: aarda@aarda.org
www.aarda.org

The American Autoimmune Related Diseases Association (AARDA) is the only national nonprofit voluntary health agency dedicated to bringing a national focus and collaborative effort to the over 100 known autoimmune diseases through education, awareness, research, and patient services. By collaborating with the National Coalition of Autoimmune Patient Groups (NCAPG), AARDA supports legislative advocacy for autoimmune disease patients. AARDA provides free patient education information, physician and agency referrals, forums and symposia, and a quarterly newsletter.

Arthritis Foundation
1330 West Peachtree Street
Atlanta, GA 30309
(404) 872-7100
(800) 283-7800, or your local chapter (listed in the telephone directory)
www.arthritis.org

The Arthritis Foundation is the major voluntary organization devoted to supporting arthritis research and providing educational and other services to individuals with arthritis. It publishes free pamphlets and a magazine for members on all types of arthritis. It also provides up-to-date information on research and treatment, nutrition, alternative therapies, and self-management strategies for patients with lupus and other autoimmune diseases. Chapters nationwide offer exercise programs, classes, support groups, physician referral services, and free literature. For more information, call your local chapter, listed in the white pages of the phone book, or contact the Arthritis Foundation at the above address.

Lupus Clinical Trials Consortium, Inc. (LCTC)
47 Hulfish Street, Suite 442
Princeton, NJ 08540
(609) 921-1532

The LCTC is a nonprofit organization that encourages the identification and testing of promising new therapies for lupus. It provides infrastructure support grants to certain academic institutions to support their clinical research activities; encourages lupus clinical researchers from those institutions to share their expertise; supports and conducts educational efforts to show the need for lupus clinical research; and disseminates scientific insights to advance the discovery of new lupus therapies.

Lupus Foundation of America (LFA), Inc.
2000 L Street, N.W., Suite 710
Washington, DC 20036
(202) 349-1155
(800) 558-0121
www.lupus.org

The LFA assists local chapters in providing services to people with lupus, works to educate the public about lupus, and supports lupus research. Through a network of more than 500 branches and support groups, the chapters provide education through information and referral services, health fairs, newsletters, publications, and seminars. Chapters provide support to people with lupus, their families, and friends through support group meetings, hospital visits, and telephone help lines.

Rheuminations, Inc.
221 East 48th Street, Ground Floor
New York, NY 10017
(212) 593-5180
Fax: (212) 593-5181
www.dxlupus.org

Rheuminations, Inc. is a private, nonprofit foundation committed to funding excellence in medical research to achieve a better understanding of the causes of lupus and to bring new treatments to market; to educate and to empower those who live with lupus and those who care for them; to establish a higher level of public awareness about the disease.

SLE Foundation, Inc.
149 Madison Ave., Suite 205
New York, NY 10016
(212) 685-4118
www.lupusny.org

The foundation supports and encourages medical research to find the cause and cure of lupus and improve its diagnosis and treatment. It also provides a wide variety of services to help patients with lupus and their families. In addition, this voluntary organization conducts a broad-based public education program to raise awareness of lupus and increase understanding of this serious, chronic, autoimmune disease.

Thanks to NIAMS for some of the information on this site Please visit their website. http://www.niams.nih.gov/hi/topics/lupus/slehandout/

Thanks to MedicineNet.com for most of the information on this site Please visit their website. http://www.medicinenet.com/script/main/hp.asp

For more information about the author, poet and researcher Karen Jean Matsko Hood, please visit www.karenjeanmatskohood.com or www.Karenhood.com

For more information about the publisher contact www.whisperingpinepress.com

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