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:
Below you will find that list, accompanied by questions created by the LFA to help individuals determine whether they should contact a healthcare professional to discuss the potential for having lupus. The LFA suggests discussing the possibility with a doctor if you answer “yes” to more than three of the questions, from your present and past health history.

The rate of SLE varies between countries, ethnicity, and sex, and changes over time.[95] In the United States, one estimate of the rate of SLE is 53 per 100,000;[95] other estimates range from 322,000 to over 1 million.[96] In Northern Europe the rate is about 40 per 100,000 people.[97] SLE occurs more frequently and with greater severity among those of non-European descent.[96] That rate has been found to be as high as 159 per 100,000 among those of Afro-Caribbean descent.[95] Childhood-onset systemic lupus erythematosus generally presents between the ages of 3 and 15 and is four times more common in girls.[98]
If your CBC comes back with high numbers of RBCs or a high hematocrit, it could indicate a number of other issues including lung disease, blood cancers, dehydration, kidney disease, congenital heart disease, and other heart problems. High WBCs, called leukocytosis, may indicate an infectious disease, inflammatory disease, leukemia, stress, and more. 

Toxic molds (mycotoxins) and heavy metals such as mercury are the two main toxins I see in those with autoimmune conditions. Mycotoxins are highly toxic substances produced by toxic molds. Only about 25% of the population carries the genes to be susceptible to the effects of mycotoxins.3 Conventional environmental mold testing only tests for levels of mold spores and does not test for mycotoxins. I use a urine mycotoxin test in my clinic to determine if someone has been exposed to toxic molds.
Drug-Induced Lupus Erythematosus, like SLE, can affect many parts of the body. However, Drug-Induced Lupus is caused by an overreaction to certain medications. Studies have shown that removal of the medication may stop disease activity. Drugs most commonly connected with drug-induced lupus are those used to treat chronic conditions, such as seizures, high blood pressure or rheumatoid arthritis.
There is no single diagnostic test for systemic lupus. The test you will hear most about is called the antinuclear antibody (ANA) test. This is not a specific test for lupus, however. In fact, a variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.

Cardiac tamponade is pressure on the heart that occurs when blood or fluid builds up in the space between the heart muscle (myocardium) and the outer covering sac of the heart (pericardium). This prevents the heart ventricles from expanding fully. The excess pressure from the fluid prevents the heart from working properly. As a result, the body does not get enough blood.
If you have difficulty with certain tasks in the kitchen due to stiffness, pain or weakness, there is a wide range of special equipment available that can make things easier. You can find details about many of these products for homes and kitchens HERE. You may wish to discuss the possibility of being referred to your rheumatology clinic’s occupational therapy team so that you can have your individual needs assessed.

On my first (and last) visit to the rheumatologist I asked what I could do to support my health or to avoid a worsening my lupus symptoms. She casually responded "Come back when you're worse and I'll put you on steroids". Straining to get some kind of supportive information I mustered up a question about diet and if there were foods I should eat or avoid. Her response was, "continue to eat whatever you want, it won't make a difference".


Whether you’re dealing with lupus, rheumatoid arthritis, Hashimoto’s or one of the hundreds of other autoimmune conditions out there, you have the power to beat your symptoms, regain your energy, and feel like yourself again. By following these steps to uncover the root cause of your illness, you CAN reverse your disease and live a life full of optimal health!
Lupus is a chronic autoimmune disease that causes the immune system to attack healthy tissue resulting in inflammation, particularly of the skin, joints, kidneys, heart, lungs, blood vessels and brain. It develops most commonly in women between the ages of 15-45, and occurs more often in African-American, Hispanics, Native Americans and Asians. Men can get lupus too. Lupus is not infectious or cancerous. People with lupus may have many different symptoms affecting various parts of the body. Some of the most common symptoms are extreme fatigue, painful or swollen joints (arthritis), unexplained fevers, skin rashes and kidney problems. Lupus is characterized by “flares” or periods of illness and remission. Warning signs of a flare can be increased fatigue, pain, rash, fever, abdominal discomfort, headache or dizziness. Learning how to recognize these signs can help people maintain better health and reduce or ward off a flare. Currently, there is no cure for lupus but it can be managed effectively with drugs, and most people with lupus lead an active, healthy life.
Systemic lupus erythematosus (SLE), commonly known as "lupus," is an autoimmune illness. The immune system, which normally protects the body from foreign invaders and infection, malfunctions and instead attacks a person's own healthy body tissues. Its cause is unknown, but most scientists believe that genetics, combined with outside triggers (such as infections, medications or other environmental factors) lead people to develop lupus. Lupus is a lifelong condition, but symptoms tend to cycle in alternate periods of "flares" (or "flares-ups") and remissions. Lupus affects women much more than men. There is no known cure, but numerous treatments are available.
The mechanism by which foreign antigens are taken into antigen-presenting cells (APCs) and broken up. Part of the antigen is then displayed (presented) on the surface of the APC next to a histocompatibility or self-antigen, activating T lymphocytes and cell-mediated immunity. T lymphocytes are unable to recognize or respond to most antigens without APC assistance.

Donna Jackson Nakazawa, researcher, writer, and author of The Autoimmune Epidemic, says "patients with lupus do better if they follow an 'anti-autoimmune diet,' which means consuming whole foods, rather than processed foods. This means lamb, chicken, or turkey; fish with low mercury content; hormone-free eggs; organic vegetables and fresh fruits; whole grains from gluten-free sources; nuts and seeds; and olive, sesame, and flaxseed oils. It also means avoiding highly processed foods, including preserved bread products, cereals and snacks, preserved meats, and other foods that are often full of chemicals, preservatives, and additives."
Blood—hematologic disorder—hemolytic anemia (low red blood cell count), leukopenia (white blood cell count<4000/µl), lymphopenia (<1500/µl), or low platelet count (<100000/µl) in the absence of offending drug; sensitivity = 59%; specificity = 89%.[75] Hypocomplementemia is also seen, due to either consumption of C3[76] and C4 by immune complex-induced inflammation or to congenitally complement deficiency, which may predispose to SLE.
A diet high in folic acid, such as found in leafy green vegetables, fruits, and fortified breads and cereals, or a folic acid supplement is important if you are taking methotrexate (Rheumatrex). For nausea caused by medications, eat small frequent meals and foods that are easy to digest. Try dry cereals, breads, and crackers. Also avoid greasy, spicy, and acidic foods.

Pain is typically treated with opioids, varying in potency based on the severity of symptoms. When opioids are used for prolonged periods, drug tolerance, chemical dependency, and addiction may occur. Opiate addiction is not typically a concern since the condition is not likely to ever completely disappear. Thus, lifelong treatment with opioids is fairly common for chronic pain symptoms, accompanied by periodic titration that is typical of any long-term opioid regimen.
Other medicines. You may need other medicines to treat illnesses or diseases that are linked to your lupus — such as high blood pressure or osteoporosis. Many people with lupus are also at risk for blood clots, which can cause a stroke or heart attack. Your doctor may prescribe anticoagulants (“blood thinners”), such as warfarin or heparin, to prevent your blood from clotting too easily. You cannot take warfarin during pregnancy.
The epicenter of where inflammation begins is considered to be the microbiome. The human microbiome is a very complex ecosystem of trillions of bacteria that perform essential functions like absorbing nutrients, producing hormones, and defending us from microbes and environmental toxins. These bacteria are constantly in flux throughout our lives, adapting to the foods we eat, the quality of our sleep, the amount of bacteria or chemicals we’re exposed to on a daily basis, and the level of emotional stress we deal with.
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.
Administer angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARBs) to all patients with lupus nephritis (except pregnant women) who have proteinuria of 0.5 g or more per 24 hours (or equivalent by protein/creatinine ratios on spot urine tests). [96] This treatment has been reported to not only reduce proteinuria by about 30% but also significantly delay the doubling of serum creatinine and the progression to ESRD (in patients with nondiabetic chronic renal disease). [139]

In this presentation, Ms. Everett covers the relationship of diet and nutritional considerations and lupus, osteoporosis, medication side effects, and vitamins and supplements. This is the first of a two-part presentation. In Part II, Ms. Everett will focus more specifically on nutrition and the importance of heart health and kidney health for people with lupus. Before beginning the presentation, Ms. Everett highlighted that nutrition has become an important area of research in regard to lupus.
Painless passage of blood or protein in the urine may often be the only presenting sign of kidney involvement. Acute or chronic renal impairment may develop with lupus nephritis, leading to acute or end-stage kidney failure. Because of early recognition and management of SLE, end-stage renal failure occurs in less than 5%[27][28] of cases; except in the black population, where the risk is many times higher.
Thinning hair is often one of the first symptoms of lupus. Hair loss is the result of inflammation of the skin and scalp. Some people with lupus lose hair by the clump. More often, hair thins out slowly. Some people also have thinning of the beard, eyebrows, eyelashes, and other body hair. Lupus can cause hair to feel brittle, break easily, and look a bit ragged, earning it the name “lupus hair.”
These are used in packaged/processed products and often to fry foods. Cooking at home more and avoiding fast foods, processed meats, and packaged sweets or cheeses can help you decrease your intake. Some people with lupus have a hard time metabolizing saturated fats and should limit sources like cheese, red meat and creamy foods if they causes symptoms to worsen.
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.
Unfortunately, there are no widely accepted diagnostic criteria for SLE. However, many doctors use the American College of Rheumatology (ACR) 11 common criteria. These criteria were designed to identify subjects for research studies, so they are very stringent. If you currently have four or more of these criteria or if you've had them in the past, chances are very high that you have SLE. However, having less than four doesn't rule out SLE. Again, additional testing may be necessary to inform a formal diagnosis. These criteria include:
Chronic diseases are noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely. Although chronic diseases are more common among older adults, they affect people of all ages and are now recognized as a leading health concern of the nation. Growing evidence indicates that a comprehensive approach to prevention can save tremendous costs and needless suffering.
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Blood—hematologic disorder—hemolytic anemia (low red blood cell count), leukopenia (white blood cell count<4000/µl), lymphopenia (<1500/µl), or low platelet count (<100000/µl) in the absence of offending drug; sensitivity = 59%; specificity = 89%.[75] Hypocomplementemia is also seen, due to either consumption of C3[76] and C4 by immune complex-induced inflammation or to congenitally complement deficiency, which may predispose to SLE.
"Keeping my weight under control has been a battle. I have tried diets. I know that being overweight increases joint stress and stress on my heart, both of which can be affected by lupus," says LaPlant. Some of the medications that people take for lupus can make it difficult to maintain a healthy weight. Prednisone, one of the most common medications used to treat lupus flares, can increase your appetite and lead to significant weight gain. Regular, low-impact exercise can help offset weight gain and also improve your health in general.

The medical doctors who treat lupus are rheumatologists who specialize in arthritis and other inflammatory disorders. However, depending on the individual, case treatment may involve a wide range of health professionals including clinical immunologists (doctors specializing in immune system disorders), nurses, psychologists, social workers, nephrologists (kidney disease specialists), hematologists (specialists in blood disorders), dermatologists, and neurologists.


Common initial and chronic complaints include fever, malaise, joint pains, muscle pains, and fatigue. Because these symptoms are so often seen in association with other diseases, these signs and symptoms are not part of the diagnostic criteria for SLE. When occurring in conjunction with other signs and symptoms (see below), however, they are considered suggestive.[11]

If you have difficulty with certain tasks in the kitchen due to stiffness, pain or weakness, there is a wide range of special equipment available that can make things easier. You can find details about many of these products for homes and kitchens HERE. You may wish to discuss the possibility of being referred to your rheumatology clinic’s occupational therapy team so that you can have your individual needs assessed.


Decorin is a protein coded for by the DCN gene. This protein is a component of the extracellular matrix, which is the intricate lattice of proteins and other molecules that forms in the spaces between cells. Decorin is found in the extracellular matrix of a variety of connective tissues, including skin, tendon, bone, and cartilage. Connective tissues support the body’s joints and organs. Decorin is involved in the organization of proteins called collagens. Collagens strengthen and support connective tissues throughout the body. Collagens also play an important role in the cornea, which is the clear outer covering of the eye. Bundles of collagen called fibrils must be strictly organized for the cornea to be transparent. Decorin ensures that these collagen fibrils are uniformly sized and regularly spaced.
Corticosteroids are more potent than NSAIDs in reducing inflammation and restoring function when the disease is active. Corticosteroids are particularly helpful when internal organs are affected. Corticosteroids can be given by mouth, injected directly into the joints and other tissues, or administered intravenously. Unfortunately, corticosteroids have serious side effects when given in high doses over prolonged periods, and the doctor will try to monitor the activity of the disease in order to use the lowest doses that are safe. Side effects of corticosteroids include weight gain, thinning of the bones and skin, infection, diabetes, facial puffiness, cataracts, and death (necrosis) of the tissues in large joints.
While there’s no one dietary program that can cure or treat lupus for all patients, a healthy lupus diet can go a long way in preventing flare-ups and decreasing complications. Molly’s Fund for Fighting Lupus states that a healthy diet is needed to prevent nutrient deficiencies, maintain strength and energy, combat medication side effects, maintain a healthy weight, and protect the heart. (4)
Donna Jackson Nakazawa, researcher, writer, and author of The Autoimmune Epidemic, says "patients with lupus do better if they follow an 'anti-autoimmune diet,' which means consuming whole foods, rather than processed foods. This means lamb, chicken, or turkey; fish with low mercury content; hormone-free eggs; organic vegetables and fresh fruits; whole grains from gluten-free sources; nuts and seeds; and olive, sesame, and flaxseed oils. It also means avoiding highly processed foods, including preserved bread products, cereals and snacks, preserved meats, and other foods that are often full of chemicals, preservatives, and additives."
Steroids or prednisone and related derivatives of cortisone. Steroid creams can be directly applied to rashes. The use of creams is usually safe and effective, especially for mild rashes. The use of steroid creams or pills in low doses can be effective for mild or moderate features of lupus. Steroids can also be used in higher doses when internal organs are threatened. Unfortunately, high doses are also most likely to produce side effects.
People with lupus should know that most rashes, and sometimes other symptoms, are aggravated by sun exposure, so you’ll want to avoid it or use sun protection. It’s critical to talk to your doctor about skin rashes and lesions that you observe, as many are treated differently, and some can be signs that the disease is progressing or changing. You may need other treatments, too.
Regulatory T cells (Tregs) are a population of CD4+ T cells with a unique role in the immune response. Tregs are crucial in suppressing aberrant pathological immune responses in autoimmune diseases, transplantation, and graft-vs-host disease after allogeneic hematopoietic stem cell transplantation. Tregs are activated through the specific T-cell receptor, but their effector function is nonspecific and they regulate the local inflammatory response through cell-to-cell contact and cytokine secretion. Tregs secrete interleukin (IL)-9 (IL-9), IL-10, and transforming growth factor-beta 1 (TGF-beta 1), which aid in the mediation of immunosuppressive activity.
SLE-associated skin manifestations can sometimes lead to scarring. In discoid lupus, only the skin is typically 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 (alopecia). Over time, 5%-10% of those with discoid lupus may develop SLE.

The monoclonal antibody belimumab (Benlysta), a B-lymphocyte stimulator–specific inhibitor, has been found to reduce disease activity and possibly decrease the number of severe flares and steroid use in patients with SLE when used in combination with standard therapy. [114] In March, 2011, the US Food and Drug Administration (FDA) approved the use of belimumab in combination with standard therapies (including steroids, nonbiologic DMARDS [eg, hydroxychloroquine, azathioprine, methotrexate]) to treat active autoantibody-positive SLE. [115]  In July 2017, a subcutaneous (SC) formulation was approved that allows patients to self-administer a once-weekly dose. [162]
Because lupus can produce a variety of symptoms in different individuals, it may take some time for a physician to actually make the diagnosis. Often a doctor will say that lupus might be present, but that the current symptoms are insufficient to signify a firm diagnosis. In this event, s/he will likely monitor the patient’s symptoms, signs, and lab tests closely over time and have him/her return for regular visits.

*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at info@kflupus.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.    
To ensure that the person has lupus and not another autoimmune disease, the American College of Rheumatology (ACR) established a list of clinical and immunologic criteria that, in any combination, point to SLE. The criteria include symptoms that the person can identify (e.g. pain) and things that a physician can detect in a physical examination and through laboratory test results. The list was originally compiled in 1971, initially revised in 1982, and further revised and improved in 2009.[120]
Blood clots are more common in people with lupus. Clots often occur in the legs (called deep venous thrombosis or DVT) and lungs (called pulmonary embolus or PE) and occasionally in the brain (stroke). Blood clots that develop in lupus patients may be associated with the production of antiphospholipid (APL) antibodies. These antibodies are abnormal proteins that may increase the tendency of the blood to clot. Blood can be tested for these antibodies.

Nutrients that are important for managing lupus, such as fiber and antioxidants, seem to have the most beneficial effects when consumed from real food rather than from supplements.  What type of foods are included in a lupus diet? These include healthy fats, plenty of fresh veggies and fruits, and probiotic foods. Considering the fact that lupus can increase your risk for other chronic health problems (for example, women with lupus have a five- to tenfold higher risk for heart disease than the general population!), a nutrient-rich lupus diet can have far-reaching protective effects.


The European League Against Rheumatism (EULAR) vaccination recommendations for rheumatic diseases, including lupus, advocate baseline assessment and delivery of nonlive vaccines during stable disease. [150] Particularly important is immunization against encapsulated organisms, such as meningococcal vaccine, pneumococcal vaccine, and routine Haemophilus influenzae childhood vaccination. Annual influenza vaccine is also encouraged.
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.

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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.

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