Written by: Leah Bedrosian, MPH
Published on: December 13, 2019
Updated on: November 1, 2019
Reviewed by: Gerda Endemann, PhD
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Lupus is a chronic autoimmune disease. It’s characterized by the production of autoantibodies (an antibody that attacks the organism’s own cells) and a disrupted immune response. Lupus can affect almost any part of the body, such as the joints, the skin, the kidneys, and the brain.
What Is an Autoimmune Disease?
More than 80 different types of autoimmune diseases have been identified. They can affect anyone, but they affect women disproportionately. We’re still not really sure what triggers autoimmune diseases, but this is what appears to happen: The body’s immune system becomes confused and can no longer differentiate between the invading germs it should attack and the body’s own healthy cells, tissues, and organs. So the immune system runs rampant, attacking anything in its path. The National Institutes of Health (NIH) estimates that more than 23.5 million Americans have an autoimmune disease, and the prevalence of many of these diseases is rising, likely due to environmental causes that have yet to be completely explained (NIH, 2012; Schmidt, 2011).
Primary Symptoms of Lupus
The symptoms are varied and unique to the individual and can include fatigue, rashes, or joint pain, which can all limit a person’s physical and mental functioning, affecting their daily life. The symptoms usually present in flare-ups followed by periods of symptom remission where you feel better—it’s unpredictable.
A disease flare or flare-up refers to a sudden increase in lupus-related symptoms or the severity of symptoms. Common symptoms include an ongoing fever, swollen joints, fatigue, rashes, or sores on the mouth or nose. Various things can trigger a flare, including sun exposure, certain hormones, drugs, and infections.
Who Is Most Likely to Be Affected by Lupus?
Lupus is most common among women, especially those between the ages of fifteen and forty-four. African American women are three times more likely to be diagnosed with lupus than white women. Lupus may strike women of color at a younger age and with more severe symptoms than white women due to genetic differences (CDC, 2018). A recent study estimated that lupus is among the top twenty causes of death among females between the ages five and sixty, which is significant, considering how often it is underdiagnosed and underreported (Yen & Singh, 2018). The exact prevalence of lupus is unknown given how difficult it is to diagnose, but the Lupus Foundation of America estimates that 1.5 million Americans and more than 5 million people worldwide have some form of lupus.
Types of Lupus
There are several types and subtypes of lupus. We’ve included information on each but focus mostly on systemic lupus erythematosus (SLE) in this article.
Systemic Lupus Erythematosus (SLE)
When you hear about lupus, it’s usually systemic lupus erythematosus (SLE), which is the most serious type since it affects all areas of the body. SLE causes inflammation of connective tissues in the joints, which can then spread to nearby organs and tissues. The most common symptoms are fatigue, weight loss, fever, joint pain, and muscle pain (Lam et al., 2016).
Cutaneous Lupus Erythematosus (CLE)
This type of lupus affects only the skin, with symptoms including rashes, hair loss, ulcers, and skin sensitivity to the sun. People with CLE may also have co-occurring SLE. There are three subtypes of CLE: acute cutaneous lupus, subacute cutaneous lupus, and chronic cutaneous lupus.
Subtypes of CLE
• Acute cutaneous lupus erythematosus: This type of lupus generally occurs alongside SLE. It can usually be identified by a red butterfly-shaped rash that extends over the bridge of the nose and onto each cheek, called a malar rash. It can cause lesions that flare up with sun exposure but typically do not cause scarring. Alternatively, a widespread itchy rash across the body may appear that’s sensitive to the sun, along with associated hair thinning (Okon & Werth, 2013).
• Subacute cutaneous lupus erythematosus (SCLE): Subacute cutaneous lupus erythematosus causes skin lesions on areas of the body that receive sun exposure, such as the chest, back, and arms. These lesions typically do not occur on the face, scalp, or below the waist. They may appear as a scaly rash or look more like eczema, but they do not cause scarring. Approximately 50 percent of patients with SCLE have SLE; however, their SLEis generally milder and less symptomatic (Okon & Werth, 2013).
• Chronic cutaneous lupus erythematosus (CCLE): CCLE encompasses several subtypes of lupus, including discoid lupus erythematosus (DLE), lupus erythematosus profundus, chilblain lupus erythematosus, and lupus tumidus.
Subtypes of CCLE
• Discoid lupus erythematosus (DLE): DLE is the most common form of CCLE and is associated with the lowest chance of also having SLE. It appears as a raised red rash (called a discoid rash) that can be scaly or turn dark brown. This rash often causes scarring but does not itch. The rashes can either appear on the head and neck—particularly on the scalp and ears, sometimes causing hair loss—or they can be more widespread. Generalized DLE may appear both above and below the neck, typically on the forearm and hands, but also sometimes may appear on the lips, mouth, nose, or genitals (Okon & Werth, 2013).
• Lupus erythematosus profundus (LEP): LEP is characterized by painful firm growths of abnormal tissue that come and go with flares and can leave indented scars. They most often appear on the upper arms, legs, face, and breasts (Okon & Werth, 2013).
• Chilblain lupus (CHLE): CHLE is a rare type of CCLE that is somewhat similar to frostbite in that it appears as painful violet patches or raised regions in areas that are exposed to cold temperatures. About 20 percent of patients with CHLE will go on to develop SLE (Okon & Werth, 2013).
• Lupus erythematosus tumidus: Lupus tumidus occurs most frequently in men. It appears as a red raised rash that is smooth with sharp borders and extremely sensitive to sun exposure (Okon & Werth, 2013).
Certain medications for seizures, high blood pressure, or rheumatoid arthritis may induce lupus. It will usually go away if the medication is stopped. The symptoms of drug-induced lupus are similar to SLE but are usually less severe and do not impact major organs.
A pregnant mother may pass autoantibodies to her baby that can cause neonatal lupus, a rare form of lupus. Mothers of infants with neonatal lupus do not necessarily have lupus themselves, but they do have some autoantibodies. Neonatal lupus may present as a red skin rash or congenital heart block, which may require the child to have a pacemaker installed. Generally, the red rash associated with neonatal lupus resolves in a few months and the child does not necessarily go on to have lupus.
How Lupus Is Diagnosed
Since the symptoms of lupus are unique for each person and may come and go with flare-ups, diagnosis can be difficult. Symptoms may also mimic other, more common disorders. There is no one diagnostic test to determine the presence of lupus. The diagnostic standard set forth by the American College of Rheumatology recommends that lupus be diagnosed if four out of the following eleven criteria are present:
1. Malar rash
2. Discoid rash
4. Oral ulcers
6. Serositis (chest inflammation)
7. Abnormal antinuclear antibodies (ANA)
8. Kidney disorder
9. Nervous system disorder
10. Blood disorder
11. Immune disorder
If four or more criteria are not present but SLE is still suspected, doctors use an ANA blood test to determine whether the patient has elevated autoantibodies, which will show up positive for around 94 percent of patients with SLE. However, it also turns up positive for many patients who don’t have SLE, so further tests are usually needed to ensure correct diagnosis (Lam, Ghetu, & Bieniek, 2016).
Additional blood tests to confirm diagnosis include the antibody tests: anti-dsDNA, anti-Sm, and anti-cardiolipin (a type of antiphospholipid). Urine analysis to examine protein and red blood cell count may help determine whether lupus has affected the kidneys. Other tests to see which organs are affected may also help with diagnosis (Lam et al., 2016).
Related Health Concerns
Lupus occurs when the immune system attacks the body’s own tissues; it’s not clear yet why this happens. In serious cases, lupus may also lead to complications, like kidney failure or cardiovascular issues. Antiphospholipid syndrome commonly co-occurs with SLE.
Many people with SLE will also experience inflammation of their kidneys, called lupus nephritis. It’s usually identifiable by swelling of the legs, ankles, and feet. Lupus nephritis may also include other symptoms, such as weight gain, high blood pressure, dark urine, and a frequent urge to urinate. Lupus nephritis is serious and at its worse can cause kidney failure. But if it’s caught early enough and treated, there shouldn’t be major health consequences (Fiehn et al., 2003).
Antiphospholipid Syndrome (APS)
Around 40 percent of people with SLE develop abnormal proteins in their blood, called antiphospholipid autoantibodies, which can disrupt normal blood flow. Less than half of SLE patients with APS will experience the consequences of these antibodies—dangerous clotting in arteries and veins (thrombosis) as well as pregnancy complications. Having lupus and APS increases your chances of thrombotic events (i.e., stroke or heart attack), organ damage, and early death (Pons-Estel, Andreoli, Scanzi, Cervera, & Tincani, 2017). Rarely, some people will develop APS and later go on to develop lupus as well. (The two diagnoses don’t always have to go hand in hand.)
Cardiovascular disease is the leading cause of death among patients with lupus (Johns Hopkins, 2007). The risk of a fatal heart attack among patients with lupus is three times higher than in the general population. Researchers propose that this may be related to inflammation, which promotes atherosclerosis (plaque building up in arteries) and can lead to heart attacks (Gartshteyn et al., 2019; Zeller & Appenzeller, 2008). It’s important to maintain a healthy diet and exercise regularly, but if this is not enough, your doctor may prescribe medications to control your blood pressure and other risk factors (see the lifestyle section).
Conventional Treatment Options for Lupus
There is not a standard cure for lupus yet, so conventional treatment focuses on symptom management. Since the symptoms of lupus manifest uniquely in each person, there is no one-size-fits-all treatment option. Treatment regimens may differ throughout the course of the disease and involve various medications and therapies.
Most people with lupus see a rheumatologist. These doctors specialize in rheumatic diseases, which are conditions of the joints, muscles, and bones, such as lupus. But because lupus can affect numerous areas of the body, the type of doctors you see may vary, too. For example, someone might see a dermatologist for skin issues, a cardiologist for heart issues, a nephrologist if they have lupus nephritis, or a neurologist if there are brain and nervous system considerationsTreatment regimens are highly dependent on the type of doctor you see—a 2015 review of SLE treatment found large variability between existing clinical practice guidelines (Tunnicliffe, Singh-Grewal, Kim, Craig, & Tong, 2015).
The most common medications to reduce mild lupus flares and symptoms are hydroxychloroquine (an antimalarial drug) and low-dose glucocorticoids (a class of steroids), both of which help suppress the immune system. Common side effects of hydroxychloroquine include headaches, dizziness, nausea, loss of appetite, and mood changes. Side effects of glucocorticoids include weight gain, bruising easily, high blood pressure, and an increased risk for osteoporosis.
For more severe lupus that affects multiple organs in the body, your doctor may prescribe additional medications. For musculoskeletal pain, which occurs in 95 percent of people with SLE, hydroxychloroquine or low-dose glucocorticoids are commonly used alone or in combination with nonsteroidal anti-inflammatory drugs (NSAIDs). Nervous system issues, such as headaches and seizures, are treated with glucocorticoids and cyclophosphamide (an immunosuppressant) (Lam et al., 2016).
There are other drugs being studied for lupus; see the clinical trials section for those that are recruiting participants.
Treating Lupus Nephritis
For patients with SLE who have evidence of kidney damage or have been diagnosed with lupus nephritis, a combination of glucocorticoids and immunosuppressants are used to preserve kidney function (Lam et al., 2016). However, immunosuppressants can have serious side effects, and consistency can be an issue, especially because women have to stop taking the medications during pregnancy to prevent harm to baby. In serious cases of lupus nephritis, a kidney transplant may be necessary.
Treating Antiphospholipid Syndrome (APS)
Thrombosis (a blood clot inside a blood vessel) is treated with blood thinners. In more-serious cases, patients can be given compounds to quickly dissolve the clots. Patients with APS should not use estrogen-containing contraceptives because they are associated with an increased risk of thrombosis (Lam et al., 2016).
Women with SLE have a higher chance of miscarriage, stillbirths, and fetal growth restriction as well as in-hospital maternal mortality (Lam et al., 2016). Thankfully, the rates of in-hospital mortality for pregnant SLE patients has declined greatly in the past twenty years or so. And as the care for people with lupus has gotten much better, the risk of pregnancy complications has also decreased (Mehta et al., 2019).
It used to be that doctors would not recommend that women with lupus become pregnant, but this is changing. Today, it is usually recommended that women work with their doctors to treat and manage lupus symptoms before planning a pregnancy. If you are pregnant or planning to become pregnant, work with your doctor to support your health and a healthy pregnancy. Antiphospholipid antibodies are a major cause of recurrent miscarriages and pregnancy complications, and because almost half of people with SLE have these antibodies, it’s important to be screened (Petri, 2019).
Every three to six months, you’ll get routine testing to monitor your lupus. Your doctor may want to measure your anti-dsDNA antibodies and creatinine levels and do a complete blood count and urine test.
If you are taking hydroxychloroquine, annual eye exams are required. If you are taking glucocorticoids, you should be regularly screened for blood cholesterol, diabetes, and osteoporosis. If you are on long-term immunosuppressants or plan to be, talk to your doctor about whether or not you should receive the Prevnar and Pneumovax vaccines (Lam et al., 2016).
For cutaneous lupus, topical anti-inflammatory and immunosuppressants may be prescribed alone or in combination with oral drugs. Because sun exposure can cause flare-ups, it’s important to shield your skin by using sunscreen regularly and wearing protective clothing (Lam et al., 2016). Your doctor may prescribe a topical cream, such as a steroid or a calcineurin inhibitor. It’s best to use lower-potency steroids on areas with thin skin, like your face; you can use stronger steroids on thicker skin areas, like the palms of your hands.
Other topical treatment options include laser therapy, cryotherapy, and dermabrasion. If there is widespread CLE or scarring or the topical treatment is not working, antimalarial drugs are the next treatment option. Other systemic drugs that may be used include steroids, immunosuppressants, immunomodulators, or oral retinoids (A. Y. Chang & Werth, 2011; Okon & Werth, 2013).
Lifestyle Changes for Lupus
Managing flare-ups is key. You may want to reduce your sun exposure, do aerobic exercise, and— especially if you have APS—avoid estrogen-containing contraceptives.
Noticing and figuring out what causes your flare-ups helps you avoid symptoms in the first place. And when flare-ups inevitably occur, there are a number of evidence-based tips that can help optimize your lifestyle and control symptoms.
Fatigue is one of the most common and debilitating symptoms among people with lupus. It can hinder your ability to engage in everyday activities or be productive at school or work. A 2014 review found that aerobic exercise and belimumab (an immunosuppressant) were the most effective at managing fatigue for people with lupus (Yuen & Cunningham, 2014). Psychological problems, stress, chronic pain, sleep disorders, and obesity can all also contribute to poor-quality sleep and daytime fatigue, so it’s important to look for the cause of fatigue and to prioritize solutions.
Exposure to UV light is known to trigger flares in some people. Protect yourself from sun exposure, potentially even ambient exposure indoors, depending on how sensitive you are. Wear a daily sunscreen of at least SPF 50 and reapply often, even on cloudy days. Wear protective clothing or clothing that offers UPF (ultraviolet protection factor). Some indoor fluorescent lightbulbs may also be bothersome if they emit UV rays (Okon & Werth, 2013). If you are avoiding sun exposure, take a daily vitamin D supplement containing at least fifteen micrograms (NIH, 2019).
Since the majority of people with lupus suffer from debilitating fatigue, physical inactivity is also common. Mustering the energy to work out can be hard, but if you’re able to exercise, the physical and mental health benefits can be profound. Several clinical studies have shown that exercise, primarily aerobic, can help reduce fatigue (Pino‐Sedeño et al., 2016; Yuen & Cunningham, 2014). Other studies have shown that physical exercise can also ease depression and pain and improve quality of life for people with SLE (Fangtham, Kasturi, Bannuru, Nash, & Wang, 2019). Additionally, strength training exercises are good for preventing bone loss since many women with lupus are at risk for osteoporosis (Edens & Robinson, 2015).
Try to find something that works for you—whether that’s walking, swimming, a group class, or a personal trainer. Start slow and work your way up at your own pace.
Hormonal Birth Control
Patients with lupus are at higher risk for pregnancy complications (see the conventional treatments section). If you have a more severe form of lupus, are on medications that interfere with a healthy pregnancy, or do not want to become pregnant, talk to your doctor about contraceptive methods. Estrogen-containing hormonal contraceptives are recommended only for patients with mild lupus and stable symptoms. Patients with antiphospholipid antibodies should not take estrogen as it increases their risk for thrombosis. Progesterone IUDs and subdermal implants are generally recommended as they are the most effective form of birth control and are safe for most patients with lupus. Patients who are on corticosteroids (a class of steroids) should avoid depot medroxyprogesterone acetate (DMPA), also known as the Depo shot, as it may cause osteoporosis (Sammaritano, 2014).
Maintaining optimal heart health is incredibly important for people with lupus. High blood pressure and obesity are major risk factors for heart disease in people with lupus. Ideally, you want to eat a low-sodium diet, work with your medical practitioners to create a healthy diet and exercise plan, and aim to exercise at least thirty minutes per day (Johns Hopkins, 2019). And do not smoke—this increases your risk for cardiovascular disease. For more information on cardiovascular health, see our article on heart disease.
If you have lupus nephritis, you’ll want to maintain a healthy lifestyle that protects your kidneys. Drink enough fluids, exercise regularly, and avoid smoking and drinking alcohol. If you have hypertension, you’ll also want to eat a low-sodium diet and work with your doctor to manage your cardiovascular health.
You may also want to do other forms of therapy to encourage holistic health: A 2017 study of more than 3,000 SLE patients in Taiwan found that integrative therapy (a combination of both conventional and herbal medicine) reduced their risk of developing lupus nephritis (C. M. Chang et al., 2017). For more, see the alternative treatments section.
Having APS puts you at risk for thrombosis, which is when a blood clot forms inside a blood vessel. (Obesity and smoking also put you at risk for thrombosis.) To reduce your risk of thrombosis, you want to keep your blood sugar, blood pressure, and cholesterol levels in check.
Dietary Changes, Nutrients, and Supplements for Lupus
Managing weight and eating a nutritious diet is important for people with lupus. Getting enough calcium, vitamin D, and omega-3 fatty acids is crucial. Some research suggests that supplementing with n-acetylcysteine may also be beneficial.
Foods to Avoid
The Johns Hopkins Lupus Center recommends that people with lupus avoid eating garlic and alfalfa sprouts, which can both stimulate the immune system.
Calcium and Vitamin D
Numerous studies have shown that people with lupus are often low in both calcium and vitamin D. This can have long-term effects on bone mineral density, increasing risk for osteoporosis. Medications such as corticosteroids are associated with low calcium and vitamin D levels, so talk to your doctor about whether you should be supplementing (Watad et al., 2016). There isn’t adequate research yet to be certain whether supplementing helps the general population or just those with low levels.
The hormone DHEA is naturally produced by your adrenal gland and helps produce other hormones, such as testosterone and estrogen. Researchers have long questioned whether DHEA may be helpful for people with lupus since blood levels of DHEA can be low in patients with inflammatory diseases, such as lupus. Preclinical studies have shown that DHEA may modulate the immune system (although the mechanisms aren’t exactly clear yet), and some recent clinical studies have shown promise among lupus patients (van Vollenhoven, 2002). We don’t have sufficient clinical evidence yet to recommend DHEA supplements for lupus.
Omega-3 Fatty Acids
Omega-3 fatty acids from fish have been suggested for various rheumatic conditions, such as lupus, due to their proposed beneficial effect on the immune system (Akbar, Yang, Kurian, & Mohan, 2017). Several clinical trials have shown that fish oil supplements significantly improve lupus disease score and possibly even energy, emotional well-being, and some inflammatory markers (Arriens, Hynan, Lerman, Karp, & Mohan, 2015; Duffy et al., 2018; Wright et al., 2008). A 2019 study from a large cohort of 456 lupus patients in Michigan, called MILES, found that patients who reported higher dietary intake of omega-3s and lower intake of omega-6s had significantly improved disease activity and better quality of sleep (Charoenwoodhipong et al., 2019).
Make sure you are eating enough fish or supplementing with a good fish oil that contains both DHA and EPA.
It’s been suggested that one of the body’s major antioxidants, glutathione, is depleted in the white blood cells of people with lupus, leading to immune dysfunction. To encourage glutathione production, n-acetylcysteine (a precursor to glutathione) has been suggested as a supplement for patients with lupus. A 2012 study of twenty-six patients with SLE found that both 2.4 grams and 4.8 grams of NAC reduced lupus disease activity and severity. Additional, large-scale clinical trials are needed to determine if NAC is an effective and safe treatment (Lai et al., 2012).
Getting plenty of vitamin C from foods and/or supplements is a good way to support glutathione levels.
Alternate Treatments for Lupus
Due to the chronic nature of lupus and the lack of curative treatments, complementary and alternative medicine (CAM) is commonly used among patients seeking relief for their symptoms and medication side effects. CAM approaches include dietary supplements, therapy, acupuncture, massage, and mind-body methods, such as yoga and meditation.
People with lupus may seek psychotherapy to help with associated mood disorders, emotional stress, or chronic pain. A 2012 meta-analysis of patients with lupus found that psychotherapy can help with anxiety, depression, stress, and disease activity (Zhang, Wei, & Wang, 2012). Therapy is highly individual and may include problem-solving, pain-management techniques, breathing exercises, talk therapy, or identifying negative thought and behavior patterns.
Meditation and mindfulness have been used for patients with chronic pain and chronic illnesses, such as rheumatoid arthritis. Mindfulness-based stress reduction (MBSR) and mindfulness-based cognitive therapy (MBCT) are two related methods that were developed by Jon Kabat-Zinn to address stress, anxiety, depression, and pain. In a 2017 study, eight group sessions of MBCT improved psychological symptoms and quality of life among patients with SLE compared to controls (Solati, Mousavi, Kheiri, & Hasanpour-Dehkordi, 2017). A 2014 study of lupus nephritis patients with chronic kidney disorder showed that six months of meditation improved nervous system function and quality of life (Bantornwan et al., 2014).
Holistic approaches often require dedication, guidance, and close consultation with an experienced practitioner. There are several certifications that designate an herbalist. The American Herbalists Guild provides a listing of registered herbalists, whose certification is designated RH (AHG). Traditional Chinese medicine degrees include LAc (licensed acupuncturist), OMD (doctor of Oriental medicine), and DipCH (NCCA) (diplomate of Chinese herbology from the National Commission for the Certification of Acupuncturists). Traditional Ayurvedic medicine from India is accredited in the US by the Association of Ayurvedic Professionals of North America (AAPNA) and the National Ayurvedic Medical Association (NAMA). There are also functional, holistic-minded practitioners (MDs, DOs, NDs, and DCs) who may use herbal protocols.
Traditional Chinese Medicine (TCM)
A specific style of integrated medicine that has been used for over 2,500 years in China is called traditional Chinese medicine (TCM), which combines herbal medicine, acupuncture, massage, and holistic therapy. A 2016 study of Taiwanese people with SLE found that those who used combined medical therapy with TCM had a significantly lower risk of early death compared to those who did not use TCM. The researchers also included a list of the most effective types of TCM protocols: Zhi Bo Di Huang Wan, Jia Wei Xiao Yao San, Liu Wei Di Huang Wan, Gan Lu Yin, and Yin Qiao San (Ma et al., 2016). Another 2016 study among patients in China found that TCM in combination with Western medicine for lupus nephritis could improve clinical efficacy of treatment and kidney health measures while reducing drug reactions (Heng et al., 2016).
A 2012 meta-analysis of acupuncture for chronic pain found significant benefits. This study was not specifically looking at people with chronic pain related to lupus (Vickers et al., 2012), and few studies have assessed acupuncture among lupus patients. But there are several one-off reports of people with lupus benefiting from the treatment. If you’re interested in this holistic approach to treatment, it could be beneficial as add-on treatment, especially for managing chronic pain.
This golden spice is well known in Ayurvedic medicine and has been researched for its anti-inflammatory benefits. A 2012 study found that lupus nephritis patients who took three 500-milligram turmeric supplements daily containing 22 milligrams of curcumin had significantly lower protein and blood in their urine as well as lower systolic blood pressure (Khajehdehi et al., 2012). While this study is promising, there has not been adequate clinical research showing the safety and efficacy of turmeric for lupus treatment. There is a phase 2 clinical study recruiting subjects now at Loma Linda University in California to study the effects of 2 grams of curcumin on patients with lupus.
Echinacea and Lupus
The Johns Hopkins Lupus Center recommends that people with lupus do not take echinacea supplements because echinacea may boost your immune system and cause flare-ups. Speak to your health care practitioner before taking any new medications or supplements.
New and Promising Research on Lupus
Studies have begun to unveil connections between our gut microbiome, mental health, certain molecules, and lupus. And a research think tank is looking to optimize existing medications for lupus patients.
How Do You Evaluate Clinical Studies and Identify Promising Results?
The results of clinical studies are described throughout this article, and you may wonder which treatments are worth discussing with your doctor. When a particular benefit is described in only one or two studies, consider it of possible interest, or perhaps worth discussing, but definitely not conclusive. Repetition is how the scientific community polices itself and verifies that a particular treatment is of value. When benefits can be reproduced by multiple investigators, they are more likely to be real and meaningful. We’ve tried to focus on review articles and meta-analyses that take all the available results into account; these are more likely to give us a comprehensive evaluation of a particular subject. Of course, there can be flaws in research, and if by chance all of the clinical studies on a particular therapy are flawed—for example with insufficient randomization or lacking a control group—then reviews and meta-analyses based on these studies will be flawed. But in general, it’s a compelling sign when research results can be repeated.
The Microbiome and Leaky Gut
Researchers at NYU School of Medicine found that women with SLE had less-diverse gut bacteria than women without lupus. They also found that the women with lupus had overwhelmingly more of one type of bacteria, called Ruminococcus gnavus, which seemed to provoke an immune attack from their antibodies. The lupus patients also appeared to have leaky guts, meaning bacteria could escape from the colon into the body. Since antibodies tend to run wild among patients with lupus, attacking everything in their path, the researchers hypothesized that patients with lupus may be experiencing an immune response to this Ruminococcus gnavus bacteria circulating in their bodies (Azzouz et al., 2019). This could cause the body’s immune system to go on a seek-and-destroy mission for the bacteria, harming other organs and tissues in the process. More research is needed to confirm whether this bacterium is a real cause of lupus—and if it is, how to resolve the issue.
Optimizing Existing Drugs for Lupus Treatment
In the past fifty years, only one new drug has been approved for lupus treatment. Recognizing the need for adequate treatments, AMPEL BioSolutions, a biomedical research think tank, began a project called LRxL-STAT, analyzing every existing drug on the market to determine if they could be repositioned for lupus treatment (Grammer et al., 2016). They have compiled the Lupus Treatment List (LRxL) with lupus patients and an expert committee, which consists of various pharmaceuticals that may help with lupus. Next, they will conduct clinical trials on the top contenders to determine if they are safe and efficacious. Their work has led to a successful phase 2 clinical study of Stelara, an immunosuppressive drug originally intended to treat psoriasis; the phase 3 study is recruiting SLE patients now.
The Depression-Lupus Link
Using data from a twenty-year prospective study of almost 200,000 women, researchers at the Harvard T.H. Chan School of Public Health were able to give more insight into the relationship between lupus and depression. They found that women with a history of depression had a 145 percent higher risk of later developing SLE, even when smoking status, BMI, and hormonal factors were taken into account (Roberts, Kubzansky, Malspeis, Feldman, & Costenbader, 2018). This means that having depression could be an independent predictor of later development of lupus, underlining the importance of mental health.
A Molecule That Exacerbates Kidney Damage
Researchers at Brigham and Women’s Hospital in Boston have identified a molecular pathway that promotes kidney damage among people with lupus. A molecule called interleukin-34 (IL-34) is created by kidney cells and stimulates immune cells called macrophages, which promote inflammation and damage. The researchers found that mice with lupus nephritis had increasing IL-34 with worsening kidney damage and that humans with lupus nephritis also had high levels of IL-34.
So what if we could remove the molecule completely? How would that affect the kidneys? When the researchers genetically altered mice to not create IL-34 anymore, the mice had less kidney damage. This research suggests that lupus nephritis treatments that decrease IL-34 could reduce kidney damage and lead to better prognosis among patients with lupus nephritis (Wada et al., 2019).
Clinical Trials for Lupus
Clinical trials are research studies intended to evaluate a medical, surgical, or behavioral intervention. They are done so that researchers can study a particular treatment that may not have a lot of data on its safety or effectiveness yet. If you’re considering signing up for a clinical trial, it’s important to note that if you’re placed in the placebo group, you won’t have access to the treatment being studied. It’s also good to understand the phase of the clinical trial: Phase 1 is the first time most drugs will be used in humans, so it’s about finding a safe dose. If the drug makes it through the initial trial, it can be used in a larger phase 2 trial to see whether it works well. Then it may be compared to a known effective treatment in a phase 3 trial. If the drug is approved by the FDA, it will go on to a phase 4 trial. Phase 3 and phase 4 trials are the most likely to involve the most effective and safest up-and-coming treatments.
In general, clinical trials may yield valuable information; they may provide benefits for some subjects but have undesirable outcomes for others. Speak with your doctor about any clinical trial you are considering.
Where Do You Find Studies That Are Recruiting Subjects?
You can find clinical studies that are recruiting subjects on clinicaltrials.gov, which is a website run by the US National Library of Medicine. The database consists of all privately and publicly funded studies that are happening around the globe. You can search for a disease or a specific drug or treatment you’re interested in, and you can filter by country where the study is taking place.
Drug Trials for SLE
There are many clinical trials currently recruiting to test drugs for lupus. Eli Lilly and Company, an American pharmaceutical company, is recruiting subjects in 170 locations in both the US and worldwide for a phase 3 clinical trial of baricitinib, a drug currently used for rheumatoid arthritis that has showed promising results for SLE patients.
Researchers at the Feinstein Institute for Medical Research are in phase 4 of studies on belimumab for early-stage lupus. Belimumab is an immunosuppressive drug already in use for lupus; this trial is designed to see how helpful it is in when treatment is started early on.
Berlin Pharmaceutical Industry is conducting a phase 4 clinical trial in Thailand of mycophenolate mofetil for lupus nephritis. To see other drug trials currently recruiting, visit clinicaltrials.gov.
Coping with Pain
To mitigate the often painful flare-ups that are characteristic of lupus, Kelli Allen, PhD, a professor of medicine at University of North Carolina at Chapel Hill, will be recruiting subjects with SLE to take an eight-week internet-based training on coping with pain called PainCOACH. It uses progressive muscle relaxation, pleasant imagery, and guided practice. The training has been shown to be helpful among patients with osteoarthritis, and the hope is that this will work for people with lupus.
Community Model for Lupus Management
Cristina Drenkard, MD, PhD, an associate professor of medicine and epidemiology at Emory University, is recruiting African American women with SLE to try an evidence-based community model for lupus management called the Chronic Disease Self-Management Program (CDSMP). The program consists of six peer-facilitated classes that are two and a half hours each, focusing on pain management, exercise, nutrition, decision-making, and treatment evaluation. CDSMP has already been well tested for other diseases, such as diabetes, but mostly among white seniors.
Gary Gilkeson, MD, a professor of medicine at the Medical University of South Carolina, is recruiting subjects with lupus for a phase 2 study to determine if mesenchymal stem cells (MSCs) are an effective treatment. MSCs are adult stem cells that are isolated, in this case, from healthy donor umbilical cords and can differentiate to various other cell types. Patients will be given either a high- or low-dose infusion of MSCs and followed for twenty-four weeks to see how they respond.
Jasvinder Singh, MD, a professor of medicine and epidemiology at the University of Alabama at Birmingham, is recruiting subjects to test his new computerized decision-aid software, called SMILE. It enables an open conversation between medical providers and lupus patients about their disease, treatment options, and side effects of treatments. Singh wants to foster a better understanding of lupus, which can be a confusing diagnosis, and help with determining what the best treatment options are for each person.
Vitamin B3 for Skin Lesions
Patients with lupus-associated skin lesions have several medication choices, including hydroxychloroquine, corticosteroids, and thalidomide. However, these treatments don’t work for everyone, and sometimes they have unwanted side effects. Qianjin Lu, MD, PhD, the director of the institute of dermatology at the Central South University in China, is proposing something new: nicotinamide, which is a common form of vitamin B3. It’s been shown in preclinical studies to have minimal side effects and help with skin lesions and autoantibody production, so now it’s ready for a phase 2 clinical study of its safety and efficacy in China. The dose they are using in this study has successfully protected skin from sun damage in human clinical trials.
Exercise for Fatigue
Rosalind Ramsey-Goldman, MD, a professor of medicine at Northwestern University, is developing a motivational program for patients with lupus that emphasizes exercise and nutrition. Participants will have four private coaching sessions and six monthly group sessions, will monitor their exercise with a Fitbit, and will record their food in a paper journal. This group will be compared to a group that just receives disease-related coaching about their lupus and not help with diet and exercise.
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This article is for informational purposes only, even if and to the extent that it features the advice of physicians and medical practitioners. This article is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice. The information and advice in this article is based on research published in peer-reviewed journals, on practices of traditional medicine, and on recommendations made by health practitioners, the National Institutes of Health, the Centers for Disease Control and Prevention, and other established medical science organizations; this does not necessarily represent the views of goop.