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Patient education: Systemic lupus erythematosus

(Beyond the Basics)
Author: Daniel J Wallace, MD
Section Editor: Robert H Shmerling, MD
Deputy Editor: Monica Ramirez Curtis, MD, MPH

All topics are updated as new evidence becomes available and our peer review process is complete.

Literature review current through: Sep 2022. | This topic last updated: Jan 19, 2022.

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SYSTEMIC LUPUS ERYTHEMATOSUS OVERVIEW

Systemic lupus erythematosus (also called SLE or just "lupus") is a chronic disease that can
affect various parts of the body. Lupus is an autoimmune condition, meaning that your body's
immune system (which normally protects the body from infection) attacks your own tissues as
though they were foreign. This can lead to pain, swelling, and damage to organs such as the
kidneys. The cause of lupus is not well understood; there is likely to be a genetic component
(meaning a person's risk is higher if they have family members with the disease), but
environmental factors are thought to play a role as well. People with lupus most often start
developing symptoms in young adulthood, although it can happen at any age.

People with lupus often have disease "flares," in which symptoms worsen, followed by periods
of remission, in which symptoms improve. The frequency of these flares varies from person to
person. Symptoms are mild in some people and life-threatening in others. However, treatments
are available to relieve symptoms, reduce inflammation, and minimize organ damage.

This article discusses the symptoms, diagnosis, and treatments for lupus in adults. The care of
pregnant people with lupus is discussed separately. (See "Patient education: Systemic lupus
erythematosus and pregnancy (Beyond the Basics)".)

SYMPTOMS OF SYSTEMIC LUPUS ERYTHEMATOSUS

Symptoms of lupus can be general, affecting the whole body, or related to the effects of
inflammation on specific organs.

Whole-body symptoms — Most people with lupus experience fatigue, fever, and weight
changes at some point in their illness.

Fatigue — Fatigue is the most common symptom of lupus and can be debilitating. Almost
everyone with lupus experiences fatigue at some point, even when there are no other
symptoms. However, fatigue can also be due to other reasons that are unrelated to lupus, and
your doctor may need to rule out other potential causes.

Fever — Many people with lupus get fevers when their disease flares. Fever is defined as a
temperature over 100°F (37.8°C).

Muscle pain — Muscle pain or tenderness is common in people with lupus; rarely, some
people also notice muscle weakness.

Weight changes — Lupus can sometimes cause weight loss or weight gain.

● Weight loss may be unintentional and due to decreased appetite or problems with the
digestive system (see 'Digestive system' below). It can also be a side effect of some
medications used to treat lupus.

● Weight gain may be related to salt and water retention associated with kidney disease (see
'Kidneys' below) or due to increased appetite (which can happen in people who take
glucocorticoids).

Specific organ symptoms — Lupus can affect virtually any organ of the body, resulting in a
variety of symptoms. It affects different parts of the body in different people.

Joint pain and stiffness — Joint pain and stiffness (arthritis) occur in almost all people with
lupus at some point during the disease, and these are often the earliest symptoms. The pain
and stiffness tends to move from one part of the body to another and does not usually affect
both sides of the body in the same way. Only a few joints are affected at any time, most
commonly the fingers, wrists, and knees. Joints may be swollen and warm to the touch.

Skin changes — Two-thirds of people with lupus have skin problems at some point. The most
common is a rash, known as the "butterfly rash" because of its shape; this appears as redness
over the cheeks and nose after being in the sun. The rash usually lasts only a few days but often
comes back.
Some people develop circular patches of raised, scaly skin (called discoid lesions), which often
leave a scar ( picture 1). Some amount of hair loss (also called alopecia) is common, but total
baldness is not. Many people develop ulcers or sores in the mouth, which are usually painless.

Raynaud phenomenon is a condition that causes blood vessels in the fingers and toes to
narrow in response to cold temperatures, emotional stress, and/or cigarette smoking. As the
blood vessels narrow, less blood flows to the area, causing the fingers or toes to turn pale and
then blue, purple, and/or red ( picture 2). Raynaud phenomenon is a frequent problem in
people with lupus. However, most people who have Raynaud phenomenon do not have lupus.
(See "Patient education: Raynaud phenomenon (Beyond the Basics)".)

Sensitivity to sunlight — Many people with lupus are sensitive to ultraviolet (UV) light.
This "photosensitivity" causes a skin rash to develop after exposure to UV light from the sun.

You can do the following to help protect your skin:

● Use a broad-spectrum sunscreen with a sun-protection factor (SPF) of 50 or greater every

day, even if you don't plan to spend a lot of time outdoors. The sunscreen should be
applied 30 to 60 minutes before going outside and should be reapplied every four to six
hours.

● Avoid sun exposure during the midday (between 10 AM and 4 PM).

● Avoid medications that may make photosensitivity worse. Your health care provider can
talk to you about this if you have questions about your medications or whether a product
is safe to use.

More information about sun protection is available separately. (See "Patient education: Sunburn
prevention (Beyond the Basics)".)

Kidneys — Changes in kidney function are common in people with lupus. These changes
usually develop during the first few years of the illness. Regular monitoring with urine and
blood tests can help to detect these changes so they can be treated as soon as possible.

● Lupus can cause inflammation of the glomerulus, the part of the kidney that filters waste
and excess fluids (which then exit the body in the form of urine). When this happens, it is
called glomerulonephritis or lupus nephritis. Damage to the glomeruli can prevent the
kidneys from filtering wastes from the bloodstream; as a result, waste products build up in
the bloodstream. (See "Patient education: Glomerular disease (Beyond the Basics)".)
 Lupus can also cause inflammation of the interstitium. This is the area around the
glomeruli, tubules, vessels, and nerves in the kidney.

● When there is damage to the glomeruli, proteins in the bloodstream can "leak" into the
urine. When this becomes severe, it can cause water retention, swelling in the feet and
lower legs, and other changes referred to as the nephrotic syndrome. (See "Patient
education: The nephrotic syndrome (Beyond the Basics)".)

If lupus nephritis is left untreated, it can lead to permanent scarring in the kidneys. If your
kidneys become too damaged to filter the blood properly, you will need dialysis or a kidney
transplant. Fortunately, treatments to prevent or minimize lupus-related kidney disease are
available.

Digestive system — Digestive symptoms can occur if lupus-related inflammation affects the

pancreas (pancreatitis), the lining of the abdomen (peritonitis), or the large intestine (colitis).
These can include severe abdominal pain, nausea, and vomiting.

The digestive system can also be affected by medications often used to treat lupus, including
glucocorticoids and nonsteroidal antiinflammatory drugs (NSAIDs). These medicines can cause
upset stomach or, less commonly, stomach ulcers. (See "Patient education: Nonsteroidal
antiinflammatory drugs (NSAIDs) (Beyond the Basics)".)

Lungs — Lung problems in lupus can include:

● Pain with breathing – Pleurisy is a type of chest pain that gets worse when you take a deep
breath. This can occur if there is inflammation of the lining covering the lungs and inside
of the chest.

● Shortness of breath – Shortness of breath can occur due to several different problems.
Collection of fluid in the space around the lungs (called pleural effusion) can make the
lung unable to inflate fully. Inflammation of the air sacs of the lung (pneumonitis) or
damage and scarring of the supporting tissues between the air sacs (interstitial lung
disease) can cause difficulty breathing.

Heart — Lupus can affect different parts of the heart. The most common part that can be
affected is the tissue that surrounds the heart called the pericardium. Lupus can cause
inflammation of the pericardium and lead to a condition known as pericarditis. People with
pericarditis can have chest pain. Less commonly, the valves of the heart or the heart muscle
itself can be affected. Lupus is also associated with an increased risk of coronary artery disease.
 Nervous system — Lupus can affect the nervous system in many ways. These problems may
be related to lupus itself or to treatments used for lupus. Some of the most common problems
affecting the nervous system include:

● Difficulty concentrating and thinking clearly

● Confusion or memory loss
● Depression and anxiety
● Headaches
● Seizures
● Burning or tingling in the hands or feet (called peripheral neuropathy)
● Weakness or numbness
● Stroke (see "Patient education: Stroke symptoms and diagnosis (Beyond the Basics)")

There are treatments that can help with lupus-related nervous system problems.

Eyes — Lupus can affect the eyes. The most common symptom is dryness of the eyes with a
feeling of grittiness or a lack of tearing. This can be treated by using over-the-counter "artificial
tears" (a liquid, gel, or ointment that can help relieve the symptoms of dry eye).

It's important to get routine eye exams if you take a medication called hydroxychloroquine to
make sure you don't develop damage to the retina. In addition, if you need to take
glucocorticoids for a long time, it is also important to have your eyes checked regularly to
monitor for cataracts or glaucoma. (See 'Medication therapy' below.)

When to call your doctor — If you have lupus, you will see a specialist called a rheumatologist
regularly (see 'Systemic lupus erythematosus treatment' below). They will monitor your health
and response to treatment.

Your rheumatologist will also tell you when you should call or seek help between visits, for
example, if you develop a fever or notice any new, different, or severe symptoms (such as a new
rash or hair loss, mouth ulcers, significant joint swelling, swelling of the ankles, or shortness of
breath).

SYSTEMIC LUPUS ERYTHEMATOSUS DIAGNOSIS

To diagnose lupus, an experienced doctor will take a history, do a physical exam, learn about
your symptoms, and order blood and urine tests. Then they will determine whether your
symptoms are likely due to lupus or another condition. If it's not clear, they may order
additional tests, such as imaging tests or biopsy (for example, if the skin or kidneys are
affected).

Professional medical societies have created specific criteria to classify patients with lupus. The
criteria vary, but they all involve confirming that a person has a minimum number of symptoms
common to lupus as well as certain laboratory test results. While these criteria were developed
to aid in research, they are sometimes used in medical practice to help with the diagnostic
process.

SYSTEMIC LUPUS ERYTHEMATOSUS TREATMENT

Although there is no cure for lupus, a variety of treatments can reduce symptoms, limit damage
to vital organs, and reduce the risk of recurrence.

It's important to see your lupus provider regularly. At these visits, your provider will ask about
your symptoms, do an exam, and order laboratory tests. This way they can tell how active your
disease is and whether you need any changes to your treatment plan. The frequency of these
visits will depend on the frequency and severity of your current and past symptoms.

It is also important to maintain visits with your primary care provider for an annual physical as
well as other routine checks for health problems. Depending on your situation, these may
include bone density screening; screening for hyperlipidemia, hypertension, and diabetes;
and/or screening for issues such as cervical and breast cancer.

Lifestyle changes and preventive interventions — There are a number of things you can do
to help manage your disease.

Sun protection — Since exposure to ultraviolet (UV) light can cause or worsen lupus
symptoms, it's important to protect yourself from the sun. This includes wearing sunscreen and
avoiding direct sun exposure when possible. (See 'Sensitivity to sunlight' above.)

Diet and nutrition — Most people with lupus do not require a special diet but should instead
eat a well-balanced diet. A well-balanced diet is one that is low in fat; high in fruits, vegetables,
and whole grains; and contains a moderate amount of meat, poultry, and fish.

However, you may need to make changes to your diet depending upon how lupus has affected
your body. Your health care provider can talk to you about your situation and whether you
should modify your diet; do not make any drastic changes without speaking with your provider
first.
In general:

● Glucocorticoids (such as prednisone), which are often used to treat lupus, increase
appetite; this can lead to weight gain. If you notice this, try to avoid overeating and stay
active.

● If you have high cholesterol or triglycerides, you may be advised to change your diet to
help manage this. (See "Patient education: High cholesterol and lipids (Beyond the
Basics)".)

● If you have swelling (edema) in your feet or lower legs, decrease the amount of salt and
sodium in your diet. (See "Patient education: Low-sodium diet (Beyond the Basics)".)

● Extra vitamins are rarely needed if you eat a balanced diet. If you are not able to eat a
balanced diet or are dieting to lose weight, you should take a daily multivitamin.

● If you take glucocorticoids every day or are a woman who has been through menopause,
your provider will likely prescribe calcium and vitamin D supplements to minimize bone
loss (which can increase the risk of fractures). (See "Patient education: Calcium and vitamin
D for bone health (Beyond the Basics)".)

● Drinking a moderate amount of alcohol (no more than one drink per day for females or
two drinks per day for males) is usually safe for people with lupus. However, alcohol can
interact with medications used to treat lupus. Talk to your health care provider if you have
questions.

● Herbal and other dietary supplements are not recommended and may even cause harm.
If you are curious about a particular vitamin or supplement, talk with your provider.

Exercise — It can be challenging to exercise when your lupus causes fatigue and other
symptoms (such as breathing problems). But being inactive can cause you to lose muscle
strength, which can make you feel worse in the long term. Even small amounts of gentle
movement can be beneficial for your health. Preferred activities include those that are lower
impact and result in strengthening and stretching of muscles, such as walking, tai chi, yoga,
Pilates, low-impact aerobics, and swimming. Advice about how to incorporate exercise into your
life is available separately. (See "Patient education: Arthritis and exercise (Beyond the Basics)".)

Avoiding smoking — Cigarette smoking has been associated with symptom flares in people
with lupus, and has many other negative health effects. Quitting smoking is difficult, but your
health care provider can help. (See "Patient education: Quitting smoking (Beyond the Basics)".)
 Vaccines — Vaccines to prevent pneumonia, flu, and coronavirus disease 2019 (COVID-19) are
recommended for people with lupus. Some people should also get the shingles vaccine.

By contrast, vaccines that contain live viruses (eg, measles, mumps, rubella, polio, varicella, and
smallpox) are not recommended for people with lupus, especially those taking
immunosuppressive therapies such as prednisone. (See "Patient education: Vaccines for adults
(Beyond the Basics)".)

Possible medication allergy — Allergies to antibiotics are more common in people with

lupus, especially antibiotics that contain sulfonamide ("sulfa"). Make sure any health care
provider who treats you for anything is aware that you have lupus so they can prescribe a
medication that is safe for you.

Medication therapy — A number of different medications are used in the treatment of lupus,
including nonsteroidal antiinflammatory drugs (NSAIDs), hydroxychloroquine, glucocorticoids
(also called steroids), and immunosuppressive agents.

The choice of medications for lupus is highly individualized and guided by which organs are
affected as well as how severe symptoms are.

Hydroxychloroquine — Everyone with lupus should be treated with daily

hydroxychloroquine (brand name: Plaquenil) unless this medication is otherwise
contraindicated. The benefits of this medication in lupus are broad and include relief of whole-
body symptoms (such as fatigue and fever), musculoskeletal symptoms, and skin symptoms, as
well as a reduction in the number of flares.

Nonsteroidal antiinflammatory drugs (NSAIDs) — NSAIDs can relieve joint pain caused by

lupus-related pain and inflammation. NSAIDs include ibuprofen (sample brand names: Advil,
Motrin) and naproxen (sample brand names: Aleve, Naprosyn).

Immunosuppressives — People with lupus affecting the internal organs (eg, involvement of

the kidney, heart, lungs, or central nervous system) usually require treatment with
glucocorticoids (steroids).

Glucocorticoids may be used alone or in combination with medications that suppress the
immune system (called "immunosuppressive" medications). Examples of immunosuppressive
medicines include mycophenolate, cyclophosphamide, azathioprine, and methotrexate.

The benefit of these medications must be weighed against the risks because these treatments
have potentially serious side effects. Glucocorticoids can cause weight gain, worsened diabetes,
thinning of bones (osteoporosis), and an increased risk of infection. Providers usually try to
avoid long-term glucocorticoid use when possible.

Other medications — In some cases, doctors prescribe "targeted therapies" such as

belimumab (brand name: Benlysta) or rituximab (brand name: Rituxan). These medications are
generally reserved for people with significant organ damage, particularly of the kidneys, blood,
lungs, or central nervous system, or if glucocorticoids and immunosuppressive therapy are not
effective.

A number of other treatment approaches for lupus are being actively investigated as well.

Reproductive considerations

Pregnancy — Pregnant people with lupus are at increased risk of miscarriage; however, the
majority of people with lupus who get pregnant are able to carry to term. Miscarriage occurs
more often in people with active disease, especially if there has been related organ damage;
other issues sometimes associated with lupus, such as the presence of certain proteins in the
body (called "antiphospholipid antibodies"), also increase the risk of miscarriage. Your doctors
can guide you on how to maximize your chances of having a healthy pregnancy and baby. In
most cases, a person should wait until their lupus has been under control (ie, no flares) for at
least six months before trying to get pregnant.

More detailed information about pregnancy in people with lupus is available separately. (See
"Patient education: Systemic lupus erythematosus and pregnancy (Beyond the Basics)".)

Family planning and contraception — Family planning is an important consideration since

many people with lupus are of reproductive age. It is important to discuss with your provider
whether or not you want to become pregnant, and whether you think you might want to get
pregnant in the future. Also, there are some medications used to treat lupus that are not safe to
take during pregnancy. The best choice of contraception depends on your symptoms, risk
factors, medications, and personal preference. Your gynecologist and rheumatologist can help
you find something that works for you. Options may include:

● An intrauterine device (IUD) – An IUD is a small device that is placed in the uterus to
prevent pregnancy. While a number of IUDs are available, those that release the hormone
progestin are often recommended for people with lupus who want a long-term method of
birth control. (See "Patient education: Long-acting methods of birth control (Beyond the
Basics)".)
 ● Birth control pills – Most birth control pills contain two hormones, estrogen and progestin.
These are safe for many people with mild forms of lupus. However, some people (eg,
those at an increased risk of blood clots) probably should not take any medicines that
contain estrogen. For these people, the progestin-only birth control pill (sometimes called
the "mini pill") may be a good option. (See "Patient education: Hormonal methods of birth
control (Beyond the Basics)".)

● Injectable birth control – The birth control shot (brand name: Depo-Provera) contains
progestin and is injected into a muscle (usually the buttock or upper arm). It may be an
option for some people with lupus, although it should not be used long-term in people
who have osteoporosis or are taking glucocorticoids. (See "Patient education: Hormonal
methods of birth control (Beyond the Basics)".)

Certain other birth control methods, including the skin patch, implant, and vaginal ring, are not
usually recommended for people with lupus because the amount of estrogen they contain may
increase the risk of blood clots.

Some medications often used to treat lupus can interfere with birth control, making one or both
medications less effective. Your providers can review your current medications with you in order
to help you choose a birth control option that will be safe and effective.

WHAT WILL MY LIFE BE LIKE?

It is hard to predict exactly how lupus will affect an individual's health and life. Lupus can cause
a wide spectrum of symptoms; in some people, it is relatively mild, while in others, it is a severe,
debilitating illness.

The life expectancy for people with lupus has dramatically increased over the last several
decades. The improvement in survival is probably due to multiple factors, including the ability
to recognize the disease earlier with more sensitive diagnostic tests, to begin treatment earlier,
and to promptly treat complications.

Some people go into remission and require no treatment, sometimes even for years.

CLINICAL TRIALS

Researchers are continually conducting clinical trials of lupus treatments to find better ways of
treating the disease. A clinical trial is a carefully controlled way to study the effectiveness of new
treatments or new combinations of known therapies. For more information about clinical trials,
visit http://clinicaltrials.gov or http://clinicalstudies.info.nih.gov.

WHERE TO GET MORE INFORMATION

Your healthcare provider is the best source of information for questions and concerns related to
your medical problem.

This article will be updated as needed on our web site (www.uptodate.com/patients). Related
topics for patients, as well as selected articles written for healthcare professionals, are also
available. Some of the most relevant are listed below.

Patient level information — UpToDate offers two types of patient education materials.

The Basics — The Basics patient education pieces answer the four or five key questions a
patient might have about a given condition. These articles are best for patients who want a
general overview and who prefer short, easy-to-read materials.

Patient education: Lupus (The Basics)

Patient education: Lupus and pregnancy (The Basics)

Patient education: Pericarditis in children (The Basics)

Patient education: Lupus and kidney disease (The Basics)

Patient education: Antinuclear antibodies (The Basics)

Patient education: Disease-modifying antirheumatic drugs (DMARDs) (The Basics)

Patient education: Interstitial lung disease (The Basics)

Patient education: Discoid lupus (The Basics)

Beyond the Basics — Beyond the Basics patient education pieces are longer, more
sophisticated, and more detailed. These articles are best for patients who want in-depth
information and are comfortable with some medical jargon.

Patient education: Systemic lupus erythematosus and pregnancy (Beyond the Basics)

Patient education: Raynaud phenomenon (Beyond the Basics)

Patient education: Sunburn prevention (Beyond the Basics)

Patient education: Glomerular disease (Beyond the Basics)

Patient education: The nephrotic syndrome (Beyond the Basics)

Patient education: Nonsteroidal antiinflammatory drugs (NSAIDs) (Beyond the Basics)

Patient education: High cholesterol and lipids (Beyond the Basics)

Patient education: Low-sodium diet (Beyond the Basics)

Patient education: Calcium and vitamin D for bone health (Beyond the Basics)

Patient education: Arthritis and exercise (Beyond the Basics)

Patient education: Vaccines for adults (Beyond the Basics)

Professional level information — Professional level articles are designed to keep doctors and
other health professionals up-to-date on the latest medical findings. These articles are
thorough, long, and complex, and they contain multiple references to the research on which
they are based. Professional level articles are best for people who are comfortable with a lot of
medical terminology and who want to read the same materials their doctors are reading.

Antibodies to double-stranded (ds)DNA, Sm, and U1 RNP

Lupus nephritis: Therapy of lupus membranous nephropathy

Coronary heart disease in systemic lupus erythematosus

Clinical manifestations and diagnosis of systemic lupus erythematosus in adults

Drug-induced lupus

Kidney transplantation in adults: Issues related to lupus nephritis

Epidemiology and pathogenesis of systemic lupus erythematosus

Gastrointestinal manifestations of systemic lupus erythematosus

Hematologic manifestations of systemic lupus erythematosus

Overview of cutaneous lupus erythematosus

Arthritis and other musculoskeletal manifestations of systemic lupus erythematosus

Neonatal lupus: Epidemiology, pathogenesis, clinical manifestations, and diagnosis

Manifestations of systemic lupus erythematosus affecting the peripheral nervous system

Neurologic and neuropsychiatric manifestations of systemic lupus erythematosus

Non-coronary cardiac manifestations of systemic lupus erythematosus in adults

Overview of the management and prognosis of systemic lupus erythematosus in adults

Pregnancy in women with systemic lupus erythematosus

Pulmonary manifestations of systemic lupus erythematosus in adults

Lupus nephritis: Initial and subsequent therapy for focal or diffuse lupus nephritis

Lupus nephritis: Treatment of focal or diffuse lupus nephritis resistant to initial therapy

Lupus nephritis: Diagnosis and classification

Clinical manifestations and diagnosis of systemic lupus erythematosus in adults, section on

'Information for patients'

The following organizations also provide reliable health information.

● National Library of Medicine

(www.nlm.nih.gov/medlineplus/healthtopics.html)
 ● National Institute of Arthritis and Musculoskeletal and Skin Disease

(www.niams.nih.gov)

● American College of Rheumatology

(www.rheumatology.org)

● Arthritis Foundation
(www.arthritis.org)

● Lupus Foundation of America

(www.lupus.org)

● Lupus Research Alliance

(www.lupusresearch.org)

ACKNOWLEDGMENT

The editorial staff at UpToDate would like to acknowledge Peter Schur, MD, who contributed to
an earlier version of this topic review.

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Topic 581 Version 29.0

Contributor Disclosures
 Daniel J Wallace, MD Grant/Research/Clinical Trial Support: Eli Lilly and Company [Lupus];Exagen
Diagnostics [Lupus];GlaxoSmithKline [Lupus].
Consultant/Advisory Boards: ChemoCentryx[Vasculitis];Eli
Lilly and Company [Lupus];GlaxoSmithKline [Lupus];Merck Serono [Lupus].
Speaker's Bureau: AstraZeneca
[Lupus];Aurinia [Lupus];ChemoCentryx[Vasculitis];GlaxoSmithKline [Lupus].
All of the relevant financial
relationships listed have been mitigated. Robert H Shmerling, MD Consultant/Advisory Boards:
Knowyourmeds [Advise on matters relating to the Company’s business, technology and products].
All of
the relevant financial relationships listed have been mitigated. Monica Ramirez Curtis, MD, MPH No
relevant financial relationship(s) with ineligible companies to disclose.

Contributor disclosures are reviewed for conflicts of interest by the editorial group. When found, these are
addressed by vetting through a multi-level review process, and through requirements for references to be
provided to support the content. Appropriately referenced content is required of all authors and must
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