Photosensitive systemic lupus erythematosus (SLE) rashes typically occur on the face or extremities, which are sun-exposed regions. Although the interphalangeal spaces are affected, the metacarpophalangeal (MCP) and proximal interphalangeal (PIP) and distal interphalangeal (DIP) joints are spared. Photo courtesy of Dr. Erik Stratman, Marshfield Clinic.
Get involved in your care. Learn as much as you can about lupus, your medications, and what kind of progress to expect. Take all your medications as your doctor prescribes, and visit your rheumatologist often to prevent serious problems. This lets your doctor keep track of your disease and change your treatment as needed. If you do not live near a rheumatologist, you may need to have your primary care doctor manage your lupus with the help of a rheumatologist.
In addition to the oral antimalarial hydroxychloroquine, doctors may prescribe topical steroids for lupus rash. Steroids or antimalarials may also be injected directly into rash lesions. (8) Topical creams containing tacrolimus or pimecrolimus that modulate the skin’s immune response may help manage lupus rash. Oral thalidomide, which affects the immune response, may be prescribed if other therapies don’t work. Doctors may also recommend that people with lupus rash avoid the sun and other ultraviolet light sources and wear sunscreen.
Everett adds that eating fish for protein is particularly good. Fish — especially salmon, tuna, and mackerel — contain omega-3 fatty acids, which are important because they help fight inflammation, she says. Omega-3s, which are also available as supplements, may decrease your risk for heart disease. This may be especially important for women with lupus because they have at least double the risk of heart disease compared with women who don't have lupus, according to a review of studies published in August 2013 in Seminars in Arthritis and Rheumatism. “Lupus is an independent risk factor for heart disease, so you should maintain a heart-healthy diet that helps fight inflammation and keeps you at a healthy weight," Everett says.
Conventional medicine does not look at the body as a whole, instead viewing it in terms of isolated systems, with a separate doctor for each one. Generally, lupus patients are under the care of a rheumatologist and a doctor who specializes in the area in which they are experiencing symptoms–for example, a nephrologist for your kidneys, and a dermatologist for your skin.
Jump up ^ Johanneson, Bo; Lima, Guadalupe; von Salomé, Jenny; Alarcón-Segovia, Donato; Alarcón-Riquelme, Marta E.; Collaborative Group on the Genetics of SLE, The BIOMED II Collaboration on the Genetics of SLE and Sjögrens syndrome (2002-11-01). "A major susceptibility locus for systemic lupus erythemathosus maps to chromosome 1q31". American Journal of Human Genetics. 71 (5): 1060–1071. doi:10.1086/344289. ISSN 0002-9297. PMC 385085. PMID 12373647.
As with all autoimmune conditions, lupus is a disease of the immune system. Your immune system has a very sophisticated mechanism for keeping you safe that it uses to identify the foreign substances that you come into contact with every day, such as allergens, toxins, infections, and even food. If your immune system deems anything dangerous, it will produce antibodies to ward off the harmful intruders.
Testing for antibody to double-stranded DNA antigen (anti-dsDNA) and antibody to Sm nuclear antigen (anti-Sm) may be helpful in patients who have a positive ANA test but do not meet full criteria for the diagnosis of systemic lupus erythematosus. AntidsDNA and anti-Sm, particularly in high titers, have high specificity for systemic lupus erythematosus, although their sensitivity is low. Therefore, a positive result helps to establish the diagnosis of the disease, but a negative result does not rule it out.46 The CAP guideline recommends against testing for other autoantibodies in ANA-positive patients, because there is little evidence that these tests are of benefit.46
If you have lupus, the autoimmune disease in which the immune system mistakenly attacks healthy cells and tissue, then you know there's no such thing as a one-size-fits-all “lupus diet.” But that doesn’t mean that a healthy diet isn’t important to lupus management. You need to eat meals that are balanced and heart-healthy, with nutrient-dense foods that minimize inflammation. It’s not complicated, but there are some basics to follow.
The best diet to follow is one which contains a good balance of varied foods, and one which you feel you can stick to. There are many diets around, some are useful, others can be too extreme, or too complicated to follow when you have limited energy and particular needs. If you have lupus nephritis it is important that you follow the advice from your hospital dietician.
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. The precise treatment is decided on an individual basis. Many people with mild symptoms may need no treatment or only intermittent courses of anti-inflammatory 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.
The doctor who caused you distress and probably confusion about your situation sounds bipolar. He probably experienced the episode when walking through the door. The basic human instinct is fight or flight when entering a new environment and he seems to have been confused by it. Also maybe he had a patient or personal experience that affected him deeply, this has nothing to do with you or your situation. My wife went through the same unnecessary experience more than once.
A one-celled organism without a true nucleus or cell organelles, belonging to the kingdom Procaryotae (Monera). The cytoplasm is surrounded by a rigid cell wall composed of carbohydrates and other chemicals that provide the basis for the Gram stain. Some bacteria produce a polysaccharide or polypeptide capsule, which inhibits phagocytosis by white blood cells. Bacteria synthesize DNA, RNA, and proteins, and they can reproduce independently but may need a host to provide food and a favorable environment. Millions of nonpathogenic bacteria live on human skin and mucous membranes; these are called normal flora. Bacteria that cause disease are called pathogens.
Many women with lupus ask "it safe for me to get pregnant?" or "can I have a healthy pregnancy?" Pregnancy is possible in most patients with lupus, but complications are frequent. Anyone with lupus should be considered to have a high risk for health complications during pregnancy. When a woman with lupus becomes pregnant or is planning to become pregnant, she should get a referral for appropriate, specialized care. Lupus patients who are positive for aPL are at high risk of miscarriage, while patients with anti-Ro/SSA and anti-La/SSB antibodies are at risk for delivering a child with neonatal lupus.
Deal with one problem at a time, Keep finding ways to enjoy the outdoors but stay away from the sun. Florescent lights also seem to cause flareups in skin from my wife’s experience. A good book I read called “The Sun Is My Enemy” covers an experience that follows what you describe, and it helps to understand the symptoms and life long effects than need addressing but don’t determine quality or length of life.
Contraception and family planning are important considerations given the risks of disease flare with exogenous estrogens and pregnancy and with the teratogenic risks of some SLE drugs. Estrogen therapies have typically been avoided to prevent disease flares; progesterone-only contraception is more often considered.  However, studies have suggested that oral estrogen-containing contraceptives may not be associated with disease flares or thrombosis risk in patients with mild lupus without antiphospholipid antibodies. [52, 145]
The most serious health risks are cardiovascular disease, kidney disease and stroke. Specifically, people with lupus are at increased risk for atherosclerosis (hardening of the arteries). In some people, inflammation can occur in the heart itself (myocarditis and endocarditis) or the membrane that surrounds it. Endocarditis can damage heart valves, which can result in heart murmurs. When the disease affects the kidneys, patients generally require intensive drug treatment to prevent permanent damage. Lupus also may attack the brain or central nervous system, which can cause seizures or stroke.
Nonsteroidal anti-inflammatory 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, 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.
Neurological disorders contribute to a significant percentage of morbidity and mortality in people with lupus. As a result, the neural side of lupus is being studied in hopes of reducing morbidity and mortality rates. One aspect of this disease is severe damage to the epithelial cells of the blood–brain barrier. In certain regions, depression affects up to 60% of women with SLE.
In 2007, the European League Against Rheumatism (EULAR) released recommendations for the treatment of SLE.  In patients with SLE without major organ manifestations, glucocorticoids and antimalarial agents may be beneficial.  NSAIDs may be used for short periods in patients at low risk for complications from these drugs. Consider immunosuppressive agents (eg, azathioprine, mycophenolate mofetil, methotrexate) in refractory cases or when steroid doses cannot be reduced to levels for long-term use. 
The American College of Rheumatology (ACR) established eleven criteria in 1982, which were revised in 1997 as a classificatory instrument to operationalise the definition of SLE in clinical trials. They were not intended to be used to diagnose individuals and do not do well in that capacity. For the purpose of identifying people for clinical studies, a person has SLE if any 4 out of 11 symptoms are present simultaneously or serially on two separate occasions.
As required by Section 801 of the Food and Drug Administration Amendments Act, in general, a description of any agreement between the sponsor of a clinical study and the principal investigator (PI) that does not allow the PI to discuss the results of the study or to publish the study results in a scientific or academic journal after the trial is completed. (This does not apply if the PI is an employee of the sponsor.)
SLE is chronic and complex, and is often difficult to diagnose. First, there is no single laboratory test that can determine if a person has SLE. Second, many symptoms of SLE are similar to those of other diseases, and can come and go over weeks and months. Finally, doctors must look at a person’s medical history, rule out other diseases, and consider both physical and laboratory evidence before a SLE diagnosis. The symptoms of SLE vary from patient to patient.
“I have had severe lupus for over twenty years and find that diet doesn’t really change any symptoms. I eat meat, fish, dairy, gluten and sugar too…all in moderation. I eat lots of fruit and veg and avoid processed foods. The only thing I avoid is alcohol. I guess everyone is different but a well-balanced, healthy diet with exercise (when I’m up to it) is my formula.”
A randomized, double-blind, placebo-controlled trial in 40 patients with juvenile-onset SLE suggests that cholecalciferol supplementation for 24 weeks is effective in decreasing disease activity and improving fatigue in these patients. Compared with the placebo group, patients receiving oral cholecalciferol 50,000 IU/week demonstrated significant improvement in Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) scores (P = 0.010) and European Consensus Lupus Activity Measurement (ECLAM) scores (P = 0.006), along with a reduction of fatigue related to social life, as measured by the Kids Fatigue Severity Scale (K-FSS) score (P = 0.008). 
Many people living with lupus are photosensitive or sensitive to the sun and fluorescent lights. It is recommended that all people living with lupus wear sunscreen. Sunscreens, greater than SPF 30, are vital in protecting patients from UVA and UVB rays which provoke skin rashes, lesions and other lupus disease activity. Patients should also avoid excess sun exposure by wearing sunscreen, wide-brim hats, avoid sunlight during peak hours of UV exposure (10:00 am - 2:00 pm) and wear tightly woven clothing.
Rheumatologists have long been concerned that the female hormone estrogen or treatment with estrogen may cause or worsen lupus. Recent research showed that estrogen therapy can trigger some mild or moderate flares of lupus, but does not cause symptoms to get much worse. Yet, estrogen can raise the risk of blood clots. Thus, you should not take estrogen if your blood tests show antiphospholipid antibodies (meaning you already have a high risk of blood clots).
We encourage you to reach out to friends, family, and join support groups to share your feelings and fears. Also, remember to be your own best advocate in your journey with lupus, take great notes, and bring a support person with you to each visit to help remind you of the doctor’s advice and information. We are always here for you, please join our online community and share your story or ask us any questions you may have! Back to top
DHEA (dehydroepiandrosterone) has been helpful in reducing fatigue, improving thinking difficulties, and improving quality of life in people with SLE. Recent research indicates that DHEA diet supplementation has been shown to improve or stabilize signs and symptoms of SLE. DHEA is commonly available in health-food stores, pharmacies, and many groceries.
According to the Lupus Foundation of America, approximately 1.5 million people in the U.S. have lupus. People of African, Asian, and Native American descent are more likely to develop lupus than are Caucasians. Although it can occur in both men and women, 90% of people diagnosed with the disease are women. Women of childbearing age (14 to 45 years old) are most often affected and as many as 1 in 250 people may develop lupus.
A normal-range ANA titer in the context of organ system involvement that suggests systemic lupus erythematosus should prompt a work-up for alternative diagnoses. If no other cause is identified, the diagnosis of ANA-negative systemic lupus erythematosus and consultation with a rheumatologist should be considered. If patients with a normal ANA titer develop new clinical features that are consistent with systemic lupus erythematosus, ANA testing should be repeated.46 [Evidence level C, consensus/expert guidelines]
Another new B-cell-suppressing treatment is belimumab (Benlysta). Belimumab blocks the stimulation of the B cells (a B-lymphocyte stimulator or BLyS-specific inhibitor) and is approved for the treatment of adults with active autoantibody-positive systemic lupus erythematosus who are receiving standard therapy. It is important to note that the efficacy of belimumab has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus. Belimumab has not been studied in combination with other biologic therapies or intravenous cyclophosphamide.
A member of a group of enzymes that can break down proteins, such as collagen, that are normally found in the spaces between cells in tissues (i.e., extracellular matrix proteins). Because these enzymes need zinc or calcium atoms to work properly, they are called metalloproteinases. Matrix metalloproteinases are involved in wound healing, angiogenesis, and tumor cell metastasis.
Raynaud’s phenomenon is a condition in which the small blood vessels in the fingers and toes spasm, limiting circulation, says Dr. Kaplan. People with Raynaud’s are extremely sensitive to cold temperatures and, in those conditions, will often notice a loss of circulation and loss of color in their digits much more quickly than people without the condition. Raynaud’s affects about a third of people with lupus and can cause color loss in the fingers and toes, which first turn blue, followed by red. (9)
Although a fever technically is any body temperature above the normal of 98.6 F (37 C), in practice, a person is usually not considered to have a significant fever until the temperature is above 100.4 F (38 C). Fever is part of the body's own disease-fighting arsenal; rising body temperatures apparently are capable of killing off many disease-producing organisms.
An abnormal elevation of temperature. The normal temperature taken orally ranges from about 97.6° to 99.6°F (36.3°C to 37.6°C). Rectal temperature is 0.5° to 1.0°F higher than oral temperature. Normal temperature fluctuates during the day and is lowest in the morning and highest in the late afternoon; these variations are maintained during a fever. The expended basal energy is estimated to be increased about 12% for each degree centigrade of fever.
The main food to avoid is alfalfa sprouts. Alfalfa is used in cattle feed in many countries and the sprouting shoots of this are sold in some health food stores, but are not included in most packaged salads. Check the label before you buy anything like this to make sure. There have been case reports of alfalfa sprout ingestion causing the onset of SLE. Alfalfa and mung bean sprouts contain high levels of L-canavanine, an amino acid protein that stimulates the immune system.
Antimalarials are another type of drug commonly used to treat lupus. These drugs prevent and treat malaria, but doctors have found that they also are useful for lupus. A common antimalarial used to treat lupus is hydroxychloroquine. It may be used alone or in combination with other drugs and generally is used to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. Clinical studies have found that continuous treatment with antimalarials may prevent flares from recurring.
No diet-based treatment of SLE has been proven effective. Patients with SLE should be reminded that activity may need to be modified as tolerated. Specifically, stress and physical illness may precipitate SLE flares. Additionally, persons with SLE should wear sunscreen and protective clothing or avoid sun exposure to limit photosensitive rash or disease flares.
The theory is that eating foods that contain gut-irritating compounds causes a ‘leaky-gut’ which means that any of the non-recommended foods are not able to be digested properly, passing large pieces from the intestines directly into your blood stream. Your body sees these as foreign substances and begins to activate the immune system which will, in turn, attack not only these substances, but the body. This, according to Paleo supporters, leads to immune disorders. The Paleo diet does exclude several large food groups and encourages a high consumption of animal fats. In some cases, this may not be the best choice for an individual’s health. Back to top
In lupus as the attack goes on, all the branches of the immune system join the fight. This leads to significant and intense inflammation. The cause of Lupus is unknown, as well as what drives its diverse presentation. We know that multiple factors are required, including: the “right” genetic makeup, environmental exposures, and organ specific characteristics. People with lupus may also have an impaired process for clearing old and damaged cells from the body, which in turn provides continuous stimuli to the immune system and leads to abnormal immune response.
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