LIVING WITH LUPUS

Health Information Basics for You and Your Family

Focused on systemic lupus erythematosus (SLE), the most common form of lupus
For Your Information

This publication is not copyrighted. You may make copies of it and give out 

as many as you want.

For more copies, contact:

National Institute of Arthritis and Musculoskeletal and 

Skin Diseases (NIAMS) Information Clearinghouse

National Institutes of Health

1 AMS Circle 

Bethesda, MD 20892-3675

You can find this publication on the NIAMS website at

https://www.niams.nih.gov.
Contents

What Is Lupus? ....................................................................1

What Are the Symptoms of SLE? ..........................................2

How Do Doctors Recognize SLE? ..........................................3

How Do Doctors Treat SLE? ..................................................4

How to Help Manage SLE .....................................................5

Research Supported by NIH/NIAMS .......................................9

Clinical Trials: You Could Make a Difference! ........................10

Where Can I Find More Information About SLE? ...................11

Tear-out Tools

Lupus Symptom Tracker .....................................................15

Daily Activity Tracker ..........................................................16

What Questions Should I Ask My Doctor About Lupus? .........17

Medication Tracker .............................................................18

Health Information Basics for You and Your Family 1

What Is Lupus?

Lupus is a chronic (long-lasting) 

autoimmune disease. This booklet 

focuses on systemic lupus 

erythematosus (SLE), the most 

common form of lupus.

Lupus is different for each person 

and can affect different areas of

the body, including:

■ Skin.

■ Joints.

■ Heart.

■ Lungs.

■ Kidneys.

■ Brain.

If you have lupus, you may have times of more symptoms (flares) 

and times of feeling better (remission). Lupus flares can be mild to 

serious, and they do not follow a pattern. However, with treatment, 

many people with lupus can manage the disease.

Anyone can get lupus, but 

women are more likely to get the 

disease than men are. Doctors 

and researchers are not sure 

what causes lupus, but they are 

working to learn more about what 

triggers the problems with the 

immune system.

An autoimmune disease 

is a condition where your 

immune system—which 

is supposed to fight off 

viruses, bacteria, and 

infection—attacks its 

own tissues instead.
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What Are the Symptoms of SLE?

The symptoms of SLE can be different for everyone. They may 

include:

■ Arthritis, causing painful 

and swollen joints and 

morning stiffness.

■ Fevers.

■ Feeling tired often.

■ Rashes.

■ Hair loss.

■ Sores, which are usually 

painless, in the nose and 

mouth.

■ Stomach pain.

■ Change of color in the 

fingers and toes—

blue-purplish, white, or 

red—from cold and stress.

■ Swollen glands.

■ Swelling in the legs or 

around the eyes.

■ Pain when breathing deeply 

or lying down.

■ Headaches, dizziness, 

depression, confusion, or 

seizures.

Your symptoms may be mild or severe; they may come and go; 

and they may affect one or several parts of your body. Some 

people with lupus start to have other problems with the kidneys, 

heart, or lungs.

See page 15 for a symptom tracker that you can tear out

and use to keep track of your symptoms and how they affect

your daily life.
Health Information Basics for You and Your Family 3

How Do Doctors Recognize SLE?

Many people can have lupus for a long time before they find 

out they have it. This happens because many of the symptoms 

of lupus are also the same symptoms that happen with other 

disorders or diseases. That’s why it’s important to tell your doctor 

about your symptoms.

There isn’t just one test to diagnose lupus. Your doctor uses the 

information you tell them during your visit, along with a physical 

exam and the results of laboratory tests, to help diagnose lupus or 

decide if you have something else. 

You may want to ask your primary 

care doctor for a referral to a 

rheumatologist. You may also see 

other types of doctors, depending 

on how lupus affects you.

A rheumatologist is a doctor 

who specializes in treating 

diseases that affect the joints 

and muscles, like lupus.
4 LIVING WITH LUPUS

How Do Doctors Treat SLE?

Although there is no cure for lupus right now, doctors have 

many ways to manage the disease. Treatment depends on the 

symptoms you have. You may receive medications to help:

■ Control pain.

■ Lower a fever.

■ Stop your immune system 

from being overactive. 

No matter what treatment you receive, it is important that 

you have regular visits with your doctor to keep track of your 

symptoms and potential side effects of treatment. Never stop your 

medicines or treatments without speaking to your doctor.

Use the tear-out medication tracker on page 18 to help you 

keep track of medications and supplements you currently 

take. Bring the list to every doctor you visit.
Health Information Basics for You and Your Family 5

How to Help Manage SLE

Living with lupus can be hard, but a positive outlook is important. 

You can do several things to help you live with lupus. A good place 

to start managing your lupus is to work with your doctor and take 

your medications as directed. At times, you may feel sadness and 

anger. But keep in mind, many people with lupus live satisfying 

and productive lives. Most people with mild disease or who are in 

remission can usually participate in the same life activities they did 

before they were diagnosed. 

Here are some tips to help you and your family manage lupus.

Learn About the Signs of a Flare

These signs may come and go. You may have swelling and rashes 

one week and no symptoms at all the next. You may find that your 

symptoms flare after you’ve been out in the sun, after a hard day 

at work, or at times when you are stressed.

Learning to recognize that a flare is coming can help you take 

steps to cope with it. Just before a flare, many people feel 

very tired or have pain, a rash, a fever, stomach discomfort, a 

headache, or joint swelling. 
6 LIVING WITH LUPUS

Steps to Help With Flares

Taking steps to prevent flares can be helpful. You can:

Talk with your doctor.

Set realistic goals

and priorities.

Limit the time you spend

in the sun.

Eat a diet rich in fruits,

vegetables, and whole

grains.

Manage your stress (see

the “Cope With Stress”

section on page 7).

Get enough rest and

quiet time.

Exercise moderately when

possible.

Ask for help from family and

friends when you need it.

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Health Information Basics for You and Your Family 7

Cope With Stress

Dealing with a long-lasting disease like lupus can be hard on your 

emotions. You might think that your friends, family, and coworkers 

do not understand how you feel. If you feel sad, depressed, or 

alone, consider:

Seeking counseling from a mental health professional.

Joining online and community support groups, and

connecting with others on social media.

Learning as much as you can about lupus and what you

can do to feel better. See the list of additional resources

on page 12.

Talking to your friends and family to help them understand

what is happening to your body.

Taking a break from focusing on the disease, and spending

some time doing activities you enjoy.

Meditating, reading, or deep breathing.

Exercising is another approach that can help you cope with 

stress and with lupus. Exercise can improve the strength and 

flexibility of your muscles, maintain the health of your joints, and 

increase your overall endurance. Be sure to talk with your doctor 

before starting any type of exercise program.

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Pregnancy With Lupus

Most women with lupus can have healthy pregnancies if the 

disease is under control. If you are planning to become pregnant, 

talk to your doctor so you can be as healthy as possible before 

becoming pregnant. Find an obstetrician who has experience 

working with women who have lupus.
Health Information Basics for You and Your Family 9

Research Supported by NIH/NIAMS

Thanks to medical research, people with lupus are living longer 

and more active lives. Scientists supported by the National 

Institute of Arthritis and Musculoskeletal and Skin Diseases 

(NIAMS), part of the National Institutes of Health (NIH), continue 

to study the causes of lupus and how it can best be treated. 

Researchers are: 

Looking at several genes that are associated with lupus risk

and severity.

Trying to understand why women are more likely than men

to have the disease.

Seeking new ways to measure what is happening inside the

body, which could help doctors predict flares in lupus and

response to specific treatments.

Searching for possible triggers for lupus.

Exploring how lupus develops and how therapies affect the

course of the disease. They are also looking into drugs to

prevent or delay kidney failure, one of the most serious and

life-threatening complications of lupus.

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Clinical Trials: You Could Make a Difference!

A clinical trial is a type of research study that involves people who 

volunteer to take part. Most clinical trials test a new treatment for a 

health problem, such as a new drug or diet. Clinical trials help doctors 

learn if a new treatment is better, the same, or worse than standard 

care. Other clinical trials test ways to prevent a disease or find it early. 

Talk to your doctor about whether a clinical trial would be right for 

you. When you volunteer to take part in clinical research, you help 

doctors and researchers learn more about SLE. 

Also, when you participate in a study, you may have the chance 

to receive the newest treatment and have additional care from the 

clinical trial staff.

To learn more about the basics of participating in a clinical trial, visit 

the website NIH Clinical Research Trials and You at https://www.nih

.gov/health-information/nih-clinical-research-trials-you.

At that website you will find:

Information on risks and potential benefits.

Firsthand stories from clinical trial volunteers.

Explanations from researchers.

Instructions for finding a clinical trial at the NIH or somewhere

else in the country.

To hear from people who have taken part in clinical studies led by 

NIAMS researchers, watch the videos at https://www.niams.nih

.gov/community-outreach-initiative/clinical-research.

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Health Information Basics for You and Your Family 11

Where Can I Find More Information 

About SLE?

National Institute of Arthritis and Musculoskeletal and 

Skin Diseases (NIAMS) Information Clearinghouse

National Institutes of Health

1 AMS Circle 

Bethesda, MD 20892-3675 

Phone: 301-495-4484

Toll free: 877-22-NIAMS (226-4267) 

TTY: 301-565-2966

Fax: 301-718-6366

Email: NIAMSinfo@mail.nih.gov

Website: https://www.niams.nih.gov

For more information about systemic lupus erythematosus, visit 

the NIAMS online Health Topic at https://www.niams.nih.gov/

health-topics/lupus.

If you need more information about available resources in your 

language or another language, please visit our website or contact 

the NIAMS Information Clearinghouse.
12 LIVING WITH LUPUS

Other Resources

U.S. Food and Drug Administration

Toll free: 888-INFO-FDA (888-463-6332)

Website: https://www.fda.gov

American College of Rheumatology

Website: https://www.rheumatology.org

American Autoimmune Related Diseases Association, Inc.

Website: http://www.aarda.org

Arthritis Foundation

Website: https://www.arthritis.org

Lupus Clinical Trials Consortium

Website: https://www.lupusclinicaltrials.org

Lupus Foundation of America

Website: https://www.lupus.org

Lupus Research Alliance

Website: https://www.lupusresearch.org
Health Information Basics for You and Your Family 13

The mission of the National Institute of Arthritis and 

Musculoskeletal and Skin Diseases (NIAMS), a part of the U.S. 

Department of Health and Human Services’ National Institutes of 

Health (NIH), is to support research into the causes, treatment, 

and prevention of arthritis and musculoskeletal and skin diseases; 

the training of basic and clinical scientists to carry out this 

research; and the dissemination of information on research 

progress in these diseases. The NIAMS Information Clearinghouse 

is a public service sponsored by the NIAMS that provides health 

information and information sources. Additional information can be 

found on the NIAMS website at https://www.niams.nih.gov.
14 LIVING WITH LUPUS

Notes:
Health Information Basics for You and Your Family Health Information Basics for You and Your Family 18

LIVING WITH LUPUS

15 

Lupus Symptom Tracker

The symptoms of lupus vary from person to person 

and can range from mild to severe. This lupus 

symptom tracker can help you and your doctor 

understand more about your condition and health. 

Write down how you feel and any changes in your 

health in the tracker. Share this information with your 

doctor at each appointment.

Common lupus symptoms: 

Joint pain and

stiffness.

Rashes.

Feeling tired often.

Fevers.

Hair loss.

Sores in the nose

and mouth.

Color change in

fingers and toes.

Headaches.

Dizziness.

Depression.

Confusion.

Seizures.

Stomach pain.

Swelling of legs,

glands, or

around eyes.

Symptom 

(describe what it

is and where)

When 

did the 

symptom 

start?

Did the symptom 

go away? If so 

when?

Rate the 

symptoms 

using the 

scale above

Describe how the 

symptom affects

your life 

What helps you

feel better?

Pain or stiffness in joints 10/30 No, stays all the time 2 Stayed home, couldn’t get 

myself dressed

Rest and taking my 

medicines

Notes or Concerns:

 

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Health Information Basics for You and Your Family

LIVING WITH LUPUS

16

Daily Activity Tracker

To help you manage your condition, it’s important for you to tell your doctor about your ability to do day-to-day tasks. Use this 

tool to monitor your daily activities. Share this information with your doctor at every appointment.

Below you will find a few examples. Fill in blank rows with similar activities that you do every day.

Activity Easy to Do Some Effort Extra Effort Difficult Unable

Attend social events November 1 November 22, 23 December 1

Bathe or shower

Concentrate or focus

Do chores around the 

house such as cleaning

Get dressed

Keep appointments

Exercise

Walk

Run
Health Information Basics for You and Your Family 20

What Questions Should I Ask My Doctor About Lupus?

Use this worksheet as a guide to start a conversation about lupus with your doctor. By talking with your doctor, you can work 

together to help manage your symptoms and improve your quality of life. Ask some of the questions below, and use the blank 

spaces to fill in your own questions.

Common Questions Answers/Notes

How long before I know if my medications are 

working?

How long will I need to take my medications?

Do any of my medications cause side effects?

Are there any new treatments that may help my 

symptoms?

Should I see other types of health care providers to 

help manage my lupus?

Under what circumstances should I contact you?

How often do I need to come to the doctor’s office 

for regular checkups?

Do I need to have any routine tests or blood work?

Can you refer me to services in the community that 

support people with lupus?

Do you know of research studies about lupus that I 

might be able to participate in or learn more about?

Is there anything else I can do to help make my 

symptoms better?

Health Information Basics for You and Your Family

LIVING WITH LUPUS

17 
Health Information Basics for You and Your Family

LIVING WITH LUPUS

18

Medication Tracker

Keeping track of your medications helps you and your doctor keep you healthy. 

Use this page to keep track of all your medications, including any over-the-counter medications or supplements. Take it with you 

to all of your doctor appointments.

Name of

Medication

What’s

It For? Doctor Dose When to 

Take It

How 

Often

Notes or Concerns About 

Medications

January 2021