Lupus: Meeting the Goals of Your Treatment

Susan L. Smith, MN, PhD Disclosures Published on May 7, 2021

This article is for people who have lupus and their care partners, or anyone who wants to learn more about lupus. The goal of this patient education activity is to educate patients about the long-term impact of lupus and the importance of treatment, even when symptoms are not apparent.

You will learn about:

What lupus is and how it can affect your body
The treatment goals of lupus
Medicines used to treat lupus and their possible side effects
Making a treatment plan with your doctor
Lifestyle changes that may help manage lupus
Questions to ask your doctor

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What Is Lupus?

Lupus is a chronic (long-term) autoimmune condition. Autoimmune means there's a problem with your immune system -- your body's natural defense system -- where it attacks your healthy tissues and organs by mistake. This can cause inflammation (swelling) and pain.

Anyone can have lupus. It's thought to be caused by a combination of genetics (traits passed on from your parents) and your environment. In most cases, the cause of lupus is unknown. There can be many different triggers for lupus. For some people, lupus may be triggered by infections, certain drugs, or sunlight.

Lupus Symptoms

Lupus can appear differently in different people. Symptoms can happen quickly or develop slowly, be mild or severe, and be temporary or permanent. Most people will have episodes when symptoms get worse (flares) then get better or go away. Many people can have mild lupus, but for some, lupus can be severe and even life-threatening.

Symptoms of lupus can include:

Inflammation, especially in the joints, hands, feet, or around the eyes
Severe fatigue (tiredness)
Skin and hair problems, such as rashes, hair loss, mouth or nose sores, or a butterfly-shaped rash on the cheeks and nose
Headaches and pain, including joint pain and stiffness
Dizziness, confusion, and memory loss
Fever
Dry eyes
Being sensitive to light
Chest pain when breathing deeply
Fingers and toes that turn white or blue and feel numb when exposed to cold or during stress

Possible Complications From Lupus

Inflammation caused by lupus can affect many body systems and organs. Because of this, lupus can cause many different symptoms and complications (additional problems) that may be long term.

Complications can include:

Infections
Skin problems
Arthritis and joint problems
Bone tissue problems
Heart, blood, and blood vessel problems such as anemia (low red blood cells), bleeding and blood clotting, and increased chance of heart disease or heart attack
Kidney damage or failure
Brain and nerve problems such as stroke, seizure, or changes in behavior
Vision and eye problems
Lung and breathing problems
Problems during pregnancy

Goals of Lupus Treatment

While there's no cure for lupus, there are treatments that can help manage symptoms and lower your chances of long-term complications.

The goals of lupus treatment are to reduce symptoms, prevent organ damage, and improve your quality of life by helping your physical and social functioning and your emotional well-being.

Treatment for Lupus

Treatment that your doctor may recommend will depend on several factors, including your age, overall health, medical history, symptoms, which parts of your body are affected, and how severe your lupus is.

Many treatments will work to lower inflammation and pain, tame your overactive immune system, and prevent or treat flares.

Medicines used may include:

Non-steroidal anti-inflammatory drugs (NSAIDs)
Steroid medicines
Disease-modifying anti-rheumatic drugs (DMARDs)
Immunosuppressants

Your doctor may also recommend other medicines to help with symptoms.

Possible Side Effects

All medicines can have side effects. Possible side effects from medicines used to treat lupus can include:

Weight gain
Mood changes and depression
Bone problems
Infections and fever
Diabetes
High blood pressure
Nausea and diarrhea

Not all side effects are listed here. Be sure to ask your doctor or pharmacist for a complete list.

Making a Plan With Your Doctor

Making a treatment plan with your doctor can help you achieve your goals. Your doctor will also consider your age, overall health, lifestyle, and personal preferences to make a plan that fits your needs.

Symptoms may come and go, but damage from lupus can still happen to your organs and body even when you're feeling ok. So following your treatment plan and taking medicines as directed is important.

Talk to your doctor about symptoms and report any side effects. Be sure to track your symptoms so you can record any changes or triggers. It may be helpful to keep a journal or diary so you can discuss them with your doctor.

Monique talks about her personal journey with lupus and making a treatment plan with her doctor that's right for her.

A Healthy Lifestyle Can Help

Maintaining a healthy lifestyle can also help manage your lupus symptoms and protect your quality of life.

Ways to do this include:

Stay active and try low-impact exercises like walking or biking
Get enough sleep (at least 8 hours) and pace yourself during the day
Maintain a healthy weight and eat a diet high in fruits and vegetables and low in unhealthy fats
Avoid alcohol
Quit smoking
Cover up, use sunscreen, and limit your time in the sun
Treat fevers
Develop coping strategies to reduce stress