Quick Lupus Facts

While lupus is not well known or understood, it is far more common than better known diseases such as leukemia, muscular dystrophy, cystic fibrosis and multiple sclerosis. Without early diagnosis and treatment, lupus can be severely debilitating, even deadly. See our blog for essential information on symptoms, treatment, and tips on living with lupus and other overlap conditions.

Lupus can affect people of all ages, including children. However, women of childbearing ages—15 to 44 years—are at greatest risk of developing SLE. Women of all ages are affected far more than men.

No two cases of lupus are the same. Symptoms come and go, and lupus mimics other diseases.

One-third of people with lupus are on work disability. By 15 years after diagnosis, 51% have stopped working.

Symptoms are unpredictable and can range from extreme fatigue, skin rashes, severe joint and muscle pain to organ failure and even death.

The causes of systemic lupus erythematosus (SLE) are still unknown, yet are believed to be linked to environmental, genetic, and hormonal factors.

Women with lupus can safely get pregnant and most will have normal pregnancies and healthy babies. However, all women with lupus who get pregnant are considered to have a “high risk pregnancy.”

Lupus is 2 to 3 times more prevalent among women of color - African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders — than among Caucasian women.

Most people with SLE do not have family members with the disease; however, some people with SLE do have a family history of the disease. Men and women with an immediate family member with SLE have only a slightly higher risk for the disease.

The cause of lupus is unknown; there is no cure. Existing treatments options are few and many have dangerous side effects.

Adults with SLE may have periods of active symptoms—called flares. Flares can be infrequent — sometimes, even years apart, and go away at other times — called remission. However, other adults may experience SLE flares more frequently throughout their life.

Often, men with lupus struggle with the idea that they have a “female’s disease,” even though the diagnosis has no connection to masculinity.

People with lupus can experience significant symptoms, such as extreme fatigue, hair loss, oral ulcers, sun sensitivity, skin rashes, fevers, muscle and joint pain, arthritis and cognitive issues. Many suffer from lung, heart and kidney problems. For others, there may be no visible symptoms.

According to the Centers for Disease Control and Prevention (CDC), there are about 16,000 new cases of lupus per year, however it is anticipated that new studies will probably change this number.

What is Lupus?

Afflicting over 5 million people worldwide, lupus is a chronic connective tissue and autoimmune disease that causes the body to create antibodies against itself. This constant production of antibodies causes inflammation throughout the body and can potentially damage specific systems (cardiovascular, central nervous system, pulmonary) and structures (skin, joints, kidneys). Symptoms can range from skin rashes and dry eyes to severe fatigue and joint swelling. Lupus can be very unpredictable by nature, often making it difficult to diagnose and treat. No one knows for sure what causes lupus.

 

Early diagnosis is key in trying to prevent damage and minimize symptoms. While having a chronic health condition such as lupus can be overwhelming and undoubtedly impact daily life, an inclusive approach to well-being that includes medical intervention, emotional support and self-care can help individuals achieve the most optimal health possible.

It can affect nearly every organ in the body with no predictability, causing widespread infections and inflammation. As of yet, lupus has no cure but advances in the medical and research community are continually being made, which will lead to earlier diagnosis, better treatments and eventually a cure. A healthy immune system protects the body against viruses, bacteria, and other foreign materials. With an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. The immune system then makes antibodies directed against “self”. This debilitating disease affects each patient differently.

5 QUICK FACTS ABOUT LUPUS

  1. Globally, approximately 5 million people have lupus, and almost 90% of them are women.

 

  1. Lupus is typically diagnosed between the ages of 15 and 45 and is most often occurs during a woman’s childbearing years.

 

  1. Men do get lupus, though they often develop it later than women, and it often takes longer to diagnose.

 

  1. Certain ethnicities have an increased risk of developing lupus including Native Americans, Hispanics, Asians, African Americans and Pacific Islanders.

 

  1. There are treatments, but there is no known cure for lupus.

 

THE Four Types of Lupus

  • Cutaneous lupus erythematosus

    One of the major organs that lupus can affect is the skin. Acute cutaneous lupus erythematosus (ACLE), subacute cutaneous lupus (SCLE) and chronic cutaneous lupus erythematosus (CCLE) are the three types of CLE.

  • Drug-induced lupus erythematosus

    Certain medications can cause lupus-like symptoms (or side effects) without an individual actually having lupus. The symptoms typically go away soon after the medication is stopped.

  • Neonatal lupus erythematosus

    Newborns may develop neonatal lupus even if they are born to mothers who do not have lupus. This form of lupus presents on the skin and usually subsides without treatment.

  • Childhood lupus erythematosus

    Children can develop lupus and in typically the same manner as adults. Kidney disease is more frequent in children with lupus, however, and often needs more aggressive monitoring and treatment.

REFERENCES

Cutaneous lupus erythematosus. (2012). American Skin Association. Retrieved April 27, 2020 from http://www.americanskin.org/resource/lupus.php

Drug-induced lupus erythematosus. (2020). U.S. National Library of Medicine. Retrieved April 27, 2020 from https://medlineplus.gov/ency/article/000446.htm
Lupus primer. (2020). Johns Hopkins Lupus Center. Retrieved February 24, 2020 from https://www.hopkinslupus.org/lupus-info/
Rees, F., Doherty, M., Grainge, M., Lanyon, P., & Zhang, W. (2017). The worldwide incidence and prevalence of systemic lupus erythematosus: A systematic review of epidemiological studies. Rheumatology, (56)11, 1945-1961. doi: 10.1093/rheumatology/kex260. Retrieved February 24, 2020 from https://academic.oup.com/rheumatology/article/56/11/1945/4079913
Systemic lupus erythematosus. (2018). The Centers for Disease Control and Prevention. Retrieved February 24, 2020 from https://www.cdc.gov/lupus/facts/detailed.html
 
Systemic lupus erythematosus (SLE or lupus). (2020). University of Rochester Medical Center. Retrieved February 24, 2020 from (https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=85&ContentID=P00058

What Causes Lupus?

Though researchers and healthcare practitioners are uncertain as to what specifically causes lupus, they have determined that several factors may influence the likelihood that someone may develop lupus.

Genetics

Individuals with family members who have an autoimmune disease may be at greater risk for developing one themselves.

 

Hormones

Estrogen may play a significant role in the development of lupus in women. The female immune system is characterized as more “responsive and robust” than the male immune system, and this may give women the tendency to have it become overly active – possibly leading to the development of autoimmune disease.

 

Antibodies

Researchers have discovered that 180 different antibodies have been found in individuals with SLE. This is the largest number of antibodies found in any autoimmune disease.

 

Digestive Health and Gut Microbiome

Individuals with SLE have a much less diverse microbiome in the gut than individuals without SLE.

Cellular Factors

Elevated levels of cytokines and B cells are often present in individuals with lupus. T cells may also play a role in the development of lupus as they can exacerbate the autoimmune response, which stimulates B cell production.

 

Epstein Barr virus (EBV)

EBV may trigger lupus in some individuals by changing how B cells function. Researchers have found that most children who develop SLE have been infected with EBV.

 

Medications

Drug-induced lupus occurs from the side effects of certain medications. While the individual may not actually have lupus, they have the symptoms. These symptoms typically go away after the medication is stopped.

 

Epigenetics

Autoreactive T cells and B cells in patients with lupus have evidence of altered patterns of DNA methylation, modifications of histones and microRNA (miRNA). Long noncoding RNAs (lncRNAs) are another type of noncoding RNAs, which have an important role in epigenetics and may possibly become a new hotspot in lupus.

REFERENCES

Lupus primer. (2020). Johns Hopkins Lupus Center. Retrieved February 24, 2020 from https://www.hopkinslupus.org/lupus-info/

Rees, F., Doherty, M., Grainge, M., Lanyon, P., & Zhang, W. (2017). The worldwide incidence and prevalence of systemic lupus erythematosus: A systematic review of epidemiological studies. Rheumatology, (56)11, 1945-1961. doi: 10.1093/rheumatology/kex260. Retrieved February 24, 2020 from https://academic.oup.com/rheumatology/article/56/11/1945/4079913

Systemic lupus erythematosus. (2018). The Centers for Disease Control and Prevention. Retrieved February 24, 2020 from https://www.cdc.gov/lupus/facts/detailed.html

Systemic lupus erythematosus (SLE). (2014). The Oncofertility Consortium of Northwestern University. Retrieved February 24, 2020 from http://oncofertility.northwestern.edu/resources/systemic-lupus-erythematosus-sle

Systemic lupus erythematosus (SLE or lupus). (2020). University of Rochester Medical Center. Retrieved February 24, 2020 from (https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=85&ContentID=P00058

Tsokos, G., Lo, M., Costa Reis, P., & Sullivan, K. (2016). New insights into the immunopathogenesis of systemic lupus erythematosus. Nature, (2016)12, 716-730. doi: 10.1038/nrrheum.2016.186. Retrieved February 24, 2020 from https://autoimmunity-network.com/articles/sheba%205299.pdf

Xiao, G. & Zuo, X. (2016). Epigenetics in systemic lupus erythematosus. Biomedical Reports, 4(s), 135-139. Doi: doi: 10.3892/br.2015.556.

Retrieved May 12, 2020 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734248/

Yaniv, G., Twig, G., Ben-Ami Shor, D., Furer, A., Sherer, Y., Mozes, O.,  Komisar, O., Slonimsky, E., Klang, E., Lotan, E., Welt, M., Marai, I., Shina, A., Amital, H., & Shoenfeld, Y. (2015). A volcanic explosion of autoantibodies in systemic lupus erythematosus: A diversity of 180 different antibodies found in SLE patients. Autoimmunity Reviews, (14)1, 75-79. doi: 101016/j.autrev.2014.10.003.

Lupus Symptoms

Lupus can present with a myriad of symptoms, often making it difficult to diagnose. Symptoms may also mimic other illnesses, often delaying diagnosis. Researchers, however, are actively working to develop better diagnostic tools to help healthcare practitioners diagnose lupus much faster – early diagnosis is key in treating lupus as effectively as possible.

 

The severity of lupus often depends on where the symptoms are. Some individuals may only show symptoms in one area of the body while others may experience lupus more systemically throughout the body.

Brain and Nervous System

Researchers have found that approximately 20% of individuals with lupus will experience migraine-like headaches that may require corticosteroids for treatment. Brain fog is also common and includes difficulties in remembering, focusing and planning.

 

Skin

Though a rash may occur anywhere on the body, the most prevalent with lupus is malar rash or “butterfly” rash that develops across the bridge of the nose and cheeks. If an individual has lupus, they may also develop skin lesions as a result from sensitivity to UV exposure and photosensitivity to the sun.

 

Fatigue and Fever

Fatigue is different than feeling sleepy or tired. It can affect the whole body resulting in profound exhaustion that can be emotionally and physically debilitating. Many experience severe fatigue when they are first diagnosed with lupus and it is often the first indication of a lupus flare. It has been shown that about 86% of individuals with lupus also experience fevers due to increased disease activity or low white blood cell count.

 

Lungs

Seemingly inexplicable shortness of breath or chest pain can occur in which can be due to conditions such as pleuritis or acute lupus pneumonitis.

 

Renal System

Lupus often presents as lupus nephritis or inflammation of the kidneys. Symptoms include swollen ankles, changes in kidney function, high blood pressure or inexplicable weight gain. Lupus nephritis can be a life-threatening condition.

Nose and Mouth

Mouth and nose ulcers are common in individuals with lupus. In the nose, the ulcers typically appear on the septum which is the bone that divides both sides of the nose. In the mouth, the ulcers typically appear on the roof of the mouth. These ulcers are also a common symptom of a lupus flare.

 

Eyes

One of the most common eye symptom of lupus is dry eye and is present when there is inflammation of the lacrimal glands, which produce tears. Individuals with dry eye report experiencing feeling like they have sand in their eyes.

 

Fingers, Toes, Tip of Nose

Some individuals may develop Raynaud’s phenomenon at the onset of lupus. Raynaud’s phenomenon is caused by the narrowing of the small arteries that supply blood to the skin. Fingers, toes or even the nose can grow exceedingly cold even when the environment is not. Raynaud’s can also change the color of skin from blue to red or even white.

 

Stomach and Digestion

If an individual has lupus, they may also show symptoms of gastrointestinal involvement. These conditions may include ulcerative colitis, Crohn’s, pancreatitis or ulcers. Though rare, some individuals may also have celiac disease and inflammatory bowel disease.

 

Musculoskeletal

Inflammation throughout the body may occur which can cause painful and stiff muscles and joints. Individuals commonly report feeling this tenderness and swelling in their thighs, arms, shoulders and neck. Swelling can also occur in the legs and hands as a result of joint inflammation. Rheumatoid arthritis is a condition that commonly overlaps with lupus.

REFERENCES

 

Tomlin, H., Syed, A., Haque, U., Adler, B., Law, B., Machireddy, K., & Manno, R. (2018). Fevers in adult lupus patients. Cureus (10)1, Article e2098. doi: 10.7759/cureus.2098. Retrieved February 24, 2020 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5866120/pdf/cureus-0010-00000002098.pdf

Systemic lupus erythematosus. (2018). The Centers for Disease Control and Prevention. Retrieved February 24, 2020 from https://www.cdc.gov/lupus/facts/detailed.html

Systemic lupus erythematosus (SLE). (2014). The Oncofertility Consortium of Northwestern University. Retrieved February 24, 2020 from http://oncofertility.northwestern.edu/resources/systemic-lupus-erythematosus-sle

Systemic lupus erythematosus (SLE or lupus). (2020). University of Rochester Medical Center. Retrieved February 24, 2020 from (https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=85&ContentID=P00058

Green, J. (n.d.). The link between lupus and teeth. Colgate. Retrieved February 24, 2020 from https://www.colgate.com/en-us/oral-health/conditions/immune-disorders/the-link-between-lupus-and-teeth-0515

Lupus primer. (2020). Johns Hopkins Lupus Center. Retrieved February 24, 2020 from https://www.hopkinslupus.org/lupus-info/

Living With Lupus

Wide-spread inflammation caused by lupus can impact many systems of the body. Some individuals may experience minimal involvement while others may experience more invasive complications. It is also not uncommon for an individual to develop other autoimmune conditions such as the overlap conditions of Sjögren’s syndrome, Raynaud’s phenomenon, antiphospholipid syndrome, mixed connective tissue disease and scleroderma. The potential for systemic involvement may be great, therefore making early diagnosis, treatment and close monitoring imperative for overall health and well-being.

 

It is also important for someone with lupus to play an active role in their own health management. Tracking symptoms, adhering to treatment plans and keeping as healthy as possible will prove key just as fostering open communication with practitioners, building strong support systems and taking care of the mind as well as the body. Developing these good habits along with learning as much as possible about lupus will help one develop a strong voice in order to effectively self-advocate.

Track Symptoms

Tracking symptoms and feelings in a diary, journal or using apps on a smartphone can help monitor the progress of treatment plans, medication changes and overall well-being. This can help both the individual and healthcare practitioners see patterns in health more clearly in order to make adjustments to treatments accordingly.

 

Stick to Treatment Plans

Sticking to treatment plans will not only help the medications and treatments to work effectively and improve health, but can also show individuals and their healthcare practitioners when treatments are clearly not working and need to be changed.

 

Build Strong Support Systems

Being surrounded by friends and family who truly care and want to help is good for the mind which in turn can be good for the body!

Communicate

Relationships with healthcare practitioners that are based on trust and open communication will enable each participant to take an active role in an individual’s healthcare and treatment plans.

 

Advocate

The voice is a powerful tool. Learning how to use it effectively to self-advocate on behalf of one’s own healthcare will build self-esteem and provide a sense of control over the situation.

 

Learn

Learning as much as one can about lupus can be powerful. Asking questions when things are unclear, learning about medications and side-effects and researching information can help build confidence.

Coping With Lupus

No one can deny that it can be incredibly difficult coping with chronic illness. Mental health therapy may be a great place to start. Joining a lupus support group is also a great way to talk with others who are going through similar experiences and share the ups and downs of living with chronic illness. A holistic approach to treating and managing lupus takes the whole being into consideration and not just the physical manifestations of the illness. Learning how to cope effectively with lupus can provide some stability and feeling of control instead of feeling powerless.

Practicing other healthy habits and a healthy lifestyle can also help overall disease management.

Exercise

Getting enough exercise can help manage pain and stiffness as well as promote healthy sleep. A healthcare practitioner can help determine an appropriate fitness routine.

 

Maintaining a Healthy Weight

Maintaining a healthy weight can not only help manage lupus symptoms, but can also stave off other conditions such as diabetes or cardiovascular disease.

 

Eat a Healthy Diet

Eating a well-balanced diet and using supplements as recommended by a healthcare practitioner is imperative for managing chronic illness.

Limit Alcohol and Caffeine Intake

Caffeine can overstimulate emotions such as stress and anxiety and can also exacerbate conditions such as Raynaud’s phenomenon or irregular heartbeat. Alcohol can interact with drugs, negatively impact sleep, increase heart rate and cause dehydration.

 

Get Plenty of Rest

Knowing when to slow down, stop or say no can ensure an individual get adequate rest. Creating a healthy sleep environment and carving out time during the day to relax and rejuvenate can give an individual a sense of control over their health.

REFERENCES

 

Barbhaiya, M., Chang, S., Costenbeder, K., Karlson, E., Lu, B., Malspeis, S., & Sparks, J. (2017). Influence of alcohol consumption on the risk of systemic lupus erythematosus among women in the nurses’ health study cohorts. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5140763/pdf/nihms793878.pdf

Callejas-Rubio J.L., Coin, M.A., Hidalgo-Tenorio, C., Jimenez-Alonso, J., Navarrete-Navarrete, N., Ortego-Centeno, N.,…Sabio-Sanchez, J.M. (2010). Efficacy of cognitive behavioural therapy for the treatment of chronic stress in patients with systemic lupus erythematosus: A randomized controlled trail. Retrieved from: https://bit.ly/2NKGLce

Gabrielle, S. (2018). When lupus and alcohol meet at a party. Retrieved from: https://lupusnewstoday.com/2018/07/19/lupus-alcohol-meet-night-partying/

Greco, C., Manzi, S., & Rudy, T. (2004). Effects of a stress-reduction program psychological function, pain, and physical function of systemic lupus erythematosus patients: A randomized controlled trial. Retrieved from: https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.20533

Lupus primer. (2020). Johns Hopkins Lupus Center. Retrieved February 24, 2020 from https://www.hopkinslupus.org/lupus-info/

Lupus and mental health concerns (2017). Retrieved from: https://www.webmd.com/lupus/guide/psychosocial-aspects-lupus#1

Systemic lupus erythematosus. (2018). The Centers for Disease Control and Prevention. Retrieved February 24, 2020 from https://www.cdc.gov/lupus/facts/detailed.html

Systemic lupus erythematosus (SLE). (2014). The Oncofertility Consortium of Northwestern University. Retrieved February 24, 2020 from http://oncofertility.northwestern.edu/resources/systemic-lupus-erythematosus-sle

Systemic lupus erythematosus (SLE or lupus). (2020). University of Rochester Medical Center. Retrieved February 24, 2020 from (https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=85&ContentID=P00058

Wang, C.M., Wei, W., & Zhang, J. (2012). Effects of psychological interventions for patients with systemic lupus erythematosus: A systemic review and metal analysis. (2012). Retrieved from: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.886.9034&rep=rep1&type=pdf