Once a lupus diagnosis has been confirmed by your physician, you will have many questions. Here is a quick list of questions to help you get started in getting the necessary information in order to have a better understanding of your specific symptoms and move forward towards the most successful course of treatment and/or management of the disease. It may also be helpful to have an advocate along with you like a friend or loved one to help you remember important details:
Recent research has found an association between certain people with lupus (especially those with lupus nephritis) and an impairment in degrading neutrophil extracellular traps (NETs). These were due to DNAse1 inhibiting factors, or NET protecting factors in people's serum, rather than abnormalities in the DNAse1 itself. DNAse1 mutations in lupus have so far only been found in some Japanese cohorts.
Studies have shown that lupus multiplies a woman’s risk for osteoporosis five times4 – an alarming figure, no doubt. Osteoporosis is a condition where bone density decreases, leading to an increased risk of skeletal fracture at older age. Like lupus, osteoporosis has no cure, so it's a condition better prevented than treated, especially for women.
Kaposi observed that lupus assumed two forms: the skin lesions (now known as discoid lupus) and a more aggravated form that affected not only the skin but also caused fever, arthritis, and other systemic disorders in people. The latter also presented a rash confined to the face, appearing on the cheeks and across the bridge of the nose; he called this the "butterfly rash". Kaposi also observed those patients who developed the "butterfly rash" (or malar rash) often were afflicted with another disease such as tuberculosis, anemia, or chlorisis which often caused death. Kaposi was one of the first people to recognize what is now termed systemic lupus erythematosus in his documentation of the remitting and relapsing nature of the disease and the relationship of skin and systemic manifestations during disease activity.
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.
While the genetics of SLE are not very well understood, there is growing evidence for the involvement of specific genes in this complex autoimmune disease. Part of the complexity of this disease is due to the effects of both environment and genetics factors that may contribute to its development. Further compounding our understanding of the etiology of the disease is the involvement of several organ systems. Genetic studies of the rates of disease in families supports the genetic basis of this disease with a heritability of >66%. Identical (monozygotic) twins were found to share susceptibility to the disease at >35% rate compared to fraternal (dizygotic) twins and other full siblings who only showed a 2–5% concordance in shared inheritance.
Genome-wide association studies (GWAS) revealed regions of linkage that were found on most chromosomes. These studies are useful in identifying the genes that may be responsible for complex diseases such as SLE. Candidate gene loci implicated with SLE include multiple alleles from the HLA region, Fc-gamma receptor, and complement component system. However, association does not prove that a specific form of a gene is responsible for the disease, as there may be other polymorphisms in the region that have a greater association effect. However, because the biological role of most genes are not completely understood, it can be difficult to attribute phenotypic traits to certain genetic polymorphisms. Since SLE is associated with so many genetic regions, it is likely an oligogenic trait, meaning that there are several genes that control susceptibility to the disease. Further complicating our understanding is the association of certain linkages with various ethnic groups.
A biopsy is a procedure that removes a small piece of living tissue from your body. The tissue is examined with a microscope for signs of damage or disease. Biopsies can be done on all parts of the body. A biopsy is the only test that can tell for sure if a suspicious area is cancer. But biopsies are performed for many other reasons too. There are different ways to do a biopsy. A needle biopsy removes tissue with a needle passed through your skin to the site of the problem. Other kinds of biopsies require surgery.
So what happens when you grow up and learn that you have lupus, or another equally devastating chronic illness? Should all of your nutritional decisions now be based on what your body needs rather than what tastes best? Can they be one in the same? If you are one of the lucky ones, they already are, and this transition is not quite as tough. But for others, the mandate that you should be choosing foods simply for their nutritional value may be yet, another “hard pill to swallow”, so to speak. Thus, the lupus and diet dilemma.
SLE is undoubtedly a potentially serious illness with involvement of numerous organ systems. However, it is important to recognize that most people with SLE lead full, active, and healthy lives. Periodic increases in disease activity (flares) can usually be managed by varying medications. Since ultraviolet light can precipitate and worsen flares, people with systemic lupus should avoid sun exposure. Sunscreens and clothing covering the extremities can be helpful. Abruptly stopping medications, especially corticosteroids, can also cause flares and should be avoided. People with SLE are at increased risk of infections as SLE-related complications, especially if they are taking corticosteroids or immunosuppressive medications. Therefore, any unexpected fever should be reported to medical professionals and evaluated.
Although no one symptom qualifies someone as having lupus, certain clinical techniques can be used to narrow down the diagnosis. For example, a test for antinuclear antibodies (ANAs) in the blood is probably the first tool a physician will use. A positive ANA test does not necessarily mean that someone has lupus; in fact, one out of five normal women has a positive ANA. However, a negative ANA test greatly reduces the suspicion.
The principal immunoglobulin in human serum. Because IgG moves across the placental barrier, it is important in producing immunity in the infant before birth. It is the major antibody for antitoxins, viruses, and bacteria. It also activates complement and serves as an opsonin. As gamma globulin, IgG may be given to provide temporary resistance to hepatitis or other disease.
Other sets of criteria, known as disease activity indices, exist for the monitoring of lupus. These forms allow a physician examining a patient to check for the improvement or worsening of the disease. These forms include the BILAG (British Isles Lupus Assessment Group Index), SLEDAI (Systemic Lupus Erythematosus Disease Activity Index), SLAM (Systemic Lupus Activity Measure), ECLAM (European Consensus Lupus Activity Measurement), and the Lupus Activity Index (LAI). Sometimes these indices will show no signs of lupus, even when the patient feels badly. This is because some of the problems that occur in lupus, such as chronic fatigue and pain, are not tracked by the indices. Instead, these symptoms represent a co-occuring problem called fibromyalgia.
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)
An intravenous pyelogram (IVP) is a special x-ray examination of the kidneys, bladder, and ureters (the tubes that carry urine from the kidneys to the bladder). An intravenous pyelogram is performed by injecting contrast material into a vein in the arm. A series of x-rays are taken at timed intervals as the contrast material goes through the kidneys, the ureters, and the bladder. The procedure helps to evaluate the condition of those organs.
According to Goldman Foung, “A diet rich in vegetables gives me energy and keeps me feeling strong and healthy." She typically eats meals filled with dark leafy greens and other colorful vegetables, eats lots of whole grains, and limits her consumption of meat and processed foods. “I also try to drink fresh-pressed beet juice as often as possible,” she adds. “It’s a great way to sneak in some of those body-boosting ingredients.”
The classical period began when the disease was first recognized in the Middle Ages. The term lupus is attributed to 12th-century Italian physician Rogerius Frugard, who used it to describe ulcerating sores on the legs of people. No formal treatment for the disease existed and the resources available to physicians to help people were limited.
Women with lupus have a higher risk of miscarriage and preterm labor, says Kaplan. Pregnant women with lupus also have a higher risk of preeclampsia, or high blood pressure, and signs that the kidneys and liver may not be functioning well. (20) If you have lupus and do get pregnant (or if you have lupus and are trying to get pregnant), see a high-risk maternal-fetal medicine specialist who has expertise in how to best handle such pregnancies.
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.)
Discoid Lupus is the most common form of Cutaneous Lupus. People living with Discoid Lupus complain of a red, raised and scaly lesion on the face, scalp or parts of the body. Manifestations on the face form across the cheeks, nose and ears. Over time, these lesions can produce scarring and skin discoloration (darkly colored and/or lightly colored areas). Typically, these lesions occur on areas of the body that are exposed to sunlight or fluorescent lights. If lesions appear in the scalp or involve the hair follicles, areas of hair loss may develop which could be permanent if the hair follicle is completely destroyed. They are often not itchy or painful.
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.
Many people with lupus will have some form of a rash, says Roberto Caricchio, MD, the interim section chief of rheumatology at Temple University Hospital and director of the Temple Lupus Clinic in Philadelphia. According to the Lupus Foundation of America, as many as two-thirds of people with lupus experience a skin rash, and estimates suggest that between 40 and 70 percent of people with lupus will notice that their symptoms get worse in the sun or some types of artificial light. (2)
Drug-induced lupus erythematosus (DIL) Some drugs can cause lupus, resulting in symptoms such as rash, arthritis, hair loss, and fever. “Once medications are discontinued, the symptoms go away,” says Roberto Caricchio, MD, the interim section chief of rheumatology at Temple University Hospital in Philadelphia and the director of the Temple Lupus Clinic at the Lewis Katz School of Medicine.
Fernández-Nebro A, Rúa-Figueroa Í, López-Longo FJ, Galindo-Izquierdo M, Calvo-Alén J, Olivé-Marqués A, Ordóñez-Cañizares C, Martín-Martínez MA, Blanco R, Melero-González R, Ibáñez-Rúan J, Bernal-Vidal JA, Tomero-Muriel E, Uriarte-Isacelaya E, Horcada-Rubio L, Freire-González M, Narváez J, Boteanu AL, Santos-Soler G, Andreu JL, Pego-Reigosa JM 2015, ‘Cardiovascular Events in Systemic Lupus Erythematosus: A Nationwide Study in Spain From the RELESSER Registry’, EAS-SER (Systemic Diseases Study Group of Spanish Society of Rheumatology). Medicine (Baltimore), vol. 94, no. 29, viewed 22 September 2017, https://www.ncbi.nlm.nih.gov/pubmed/26200625
Recommendations are applicable to patients showing partial or total remission after induction therapy aiming at sustaining renal remission, preventing relapses and achieving the best long-term outcome. The following interventions were considered: (1) AZA; (2) MMF; (3) CYC; (4) TAC; and (5) CsA (online supplementary tables S126.96.36.199, S188.8.131.52, S184.108.40.206, S1.2.1, S1.2.3, S1.2.4, S1.2.5, S1.2.6, S1.2.7).
The authors reviewed the influence of nutritional factors on systemic lupus erythematosus (SLE) and discussed an alternative treatment option. The autoimmunity and inflammatory process of SLE are related to the presence of dyslipidemia, obesity, systemic arterial hypertension, and metabolic syndrome, which should be properly considered to decrease cardiovascular risk. A diet with moderate protein and energy content, but rich in vitamins, minerals (especially antioxidants), and mono/polyunsaturated fatty acids can promote a beneficial protective effect against tissue damage and suppression of inflammatory activity, in addition to helping the treatment of those comorbidities. Diet therapy is a promising approach and some recommendations may offer a better quality of life to patients with SLE.
A genetic disorder is a disease caused in whole or in part by a change in the DNA sequence away from the normal sequence. Genetic disorders can be caused by a mutation in one gene (monogenic disorder), by mutations in multiple genes (multifactorial inheritance disorder), by a combination of gene mutations and environmental factors, or by damage to chromosomes (changes in the number or structure of entire chromosomes, the structures that carry genes).
In patients with SLE and nephritis who progress to end-stage renal disease, dialysis and transplantation may be required; these treatments have rates of long-term patient and graft survival that are similar to those observed in patients without diabetes and SLE.  However, transplantation is considered the treatment of choice because of improved survival rates. 
In healthy conditions, apoptotic lymphocytes are removed in germinal centers (GC) by specialized phagocytes, the tingible body macrophages (TBM), which is why no free apoptotic and potential autoantigenic material can be seen. In some people with SLE, accumulation of apoptotic debris can be observed in GC because of an ineffective clearance of apoptotic cells. In close proximity to TBM, follicular dendritic cells (FDC) are localised in GC, which attach antigen material to their surface and, in contrast to bone marrow-derived DC, neither take it up nor present it via MHC molecules.
A chronic inflammation of large arteries, usually the temporal, occipital, or ophthalmic arteries, identified on pathological specimens by the presence of giant cells. It causes thickening of the intima, with narrowing and eventual occlusion of the lumen. It typically occurs after age 50. Symptoms include headache, tenderness over the affected artery, loss of vision, and facial pain. The cause is unknown, but there may be a genetic predisposition in some families. Corticosteroids are usually administered.
ANA = antinuclear antibody; CNS = central nervous system; ds-DNA = double-stranded DNA; ELISA = enzyme-linked immunoassay; ENA = extractable nuclear antigen; Ig = immunoglobulin; p-ANCA = perinuclear antineutrophil cytoplasmic antibody; RBCs = red blood cells; RNP = ribonucleic protein; SLE = systemic lupus erythematosus; Sm = Smith; SSA = Sjögren syndrome A; SSB = Sjögren syndrome B.
As many as 70% of people with lupus have some skin symptoms. The three main categories of lesions are chronic cutaneous (discoid) lupus, subacute cutaneous lupus, and acute cutaneous lupus. People with discoid lupus may exhibit thick, red scaly patches on the skin. Similarly, subacute cutaneous lupus manifests as red, scaly patches of skin but with distinct edges. Acute cutaneous lupus manifests as a rash. Some have the classic malar rash (or butterfly rash) associated with the disease. This rash occurs in 30 to 60% of people with SLE.
Lupus is diagnosed when a person has several features of the disease (including symptoms, findings on examination, and blood test abnormalities). The American College of Rheumatology has devised criteria to assist doctors in making the correct diagnosis of lupus. A person should have at least four of the following 11 criteria, either at the same time or one after the other, to be classified as having lupus. These criteria include:
The 19th century's research into lupus continued with the work of Sir William Osler who, in 1895, published the first of his three papers about the internal complications of erythema exudativum multiforme. Not all the patient cases in his paper had SLE but Osler's work expanded the knowledge of systemic diseases and documented extensive and critical visceral complications for several diseases including lupus. Noting that many people with lupus had a disease that not only affected the skin but many other organs in the body as well, Osler added the word "systemic" to the term lupus erythematosus to distinguish this type of disease from discoid lupus erythematosus. Osler's second paper noted that reoccurrence is a special feature of the disease and that attacks can be sustained for months or even years. Further study of the disease led to a third paper, published in 1903, documenting afflictions such as arthritis, pneumonia, the inability to form coherent ideas, delirium, and central nervous system damage as all affecting patients diagnosed with SLE.
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.
Normally, our immune system produces proteins called antibodies that protect the body from these foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies are made that damage and destroy healthy tissue (auto means self and anti means against, so autoantibody means against self). These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Your kidneys are two bean-shaped organs, each about the size of your fists. They are located near the middle of your back, just below the rib cage. Inside each kidney about a million tiny structures called nephrons filter blood. They remove waste products and extra water, which become urine. The urine flows through tubes called ureters to your bladder, which stores the urine until you go to the bathroom. Most kidney diseases attack the nephrons. This damage may leave kidneys unable to remove wastes. Causes can include genetic problems, injuries, or medicines.
ANAs are proteins made by the body that can attach to DNA and other substances inside cells. But just because they are present in the body doesn’t necessarily mean they will attack these substances. These antibodies are found in at least 5% of the general population, so there are "many more people walking around with ANAs who are perfectly healthy or have some illness that has nothing to do with lupus," adds Dr. Belmont.
Any of the plasma proteins whose concentration increases or decreases by at least 25% during inflammation. Acute-phase proteins include C-reactive protein, several complement and coagulation factors, transport proteins, amyloid, and antiprotease enzymes. They help mediate both positive and negative effects of acute and chronic inflammation, including chemotaxis, phagocytosis, protection against oxygen radicals, and tissue repair. In clinical medicine the erythrocyte sedimentation rate or serum C-reactive protein level sometimes is used as a marker of increased amounts of acute-phase proteins.
Corticosteroids. Corticosteroids, such as prednisone, can be helpful in reducing inflammation. Sometimes steroids are used for a few weeks until other slower medications can become effective. Because of their many side effects, the lowest possible dose should be used for the shortest length of time. Usually a corticosteroid is given by mouth as a pill or liquid. However, some forms can be given as an injection into the joint or muscle, or as an IV into a vein. It is important to slowly stop (taper off) steroids instead of stopping them suddenly.
Affiliate Disclosure: There are links on this site that can be defined as affiliate links. This means that I may receive a small commission (at no cost to you) if you purchase something when clicking on the links that take you through to a different website. By clicking on the links, you are in no way obligated to buy.
Please Note: The material on this site is provided for informational purposes only and is not medical advice. Always consult your physician before beginning any diet or exercise program.
Copyright © livehopelupus.org