Yes, Lupus Can Be Deadly

Life with lupus can be unpredictable. With this condition, your immune system can’t tell the difference between foreign invaders and healthy tissue.

“Generally speaking, lupus is the body’s inability to recognize self and non-self,” says rheumatologist Emily Littlejohn, DO, MPH. “The immune system essentially attacks itself, which manifests in things like rashes, joint pain, hair loss and in severe cases, kidney, heart and lung problems.”

Such widespread symptoms can have lasting effects. They may even be fatal in some cases if not caught early enough or treated.

Dr. Littlejohn shares more about how lupus can affect your body and how modern-day outcomes are often better than you might imagine.

Why lupus can be deadly

Systemic lupus erythematosus, the most common form of lupus, isn’t typically fatal. But it can be. Symptoms and outcomes of the disease can range from mild joint and skin problems to life-threatening conditions, especially when it affects multiple organs and organ systems.

“What we worry the most about is end-organ damage, especially at the time of diagnosis,” Dr. Littlejohn says. “When lupus comes on quickly, that means it’s very active within the body.”

This is most common in women ages 15 to 44 whose lupus begins with severe symptoms. Active, severe lupus can kill because it can damage your:

• Skin
• Joints
• Kidneys
• Heart
• Lungs
• Brain

“The outlook is usually worse for people who are very ill at the beginning, who are perpetually ill or whose lupus takes a long time to get into remission,” Dr. Littlejohn says.

She explains some of these potentially life-threatening effects.

Organ damage

“Lupus nephritis — lupus in the kidneys — is one of the most potentially devastating manifestations of lupus,” says Dr. Littlejohn. “It’s important to get it diagnosed early and treated quickly.”

Signs that your lupus is affecting your kidneys may include:

• Foamy urine
• Bloody urine
• Lower extremity swelling
• Fever
• Weight loss
• Rash

About 40% of people who have systemic lupus erythematosus also develop neuropsychiatric lupus — a type that affects your central nervous system, like your brain, spinal cord and nerves.

Common symptoms of neuropsychiatric lupus include:

• Brain fog
• Changes in consciousness or thought
• Forgetfulness

More severe, brain-related complications are rare, but could include:

• Seizures
• Stroke
• Myelitis, an inflamed spinal cord
• Psychosis

Complications with illness recovery

As lupus weakens your immune system, it makes it harder to fight off infections. You could get sick more often or deal with chronic, lingering symptoms.

Immunosuppressants are medications used to treat lupus. They help you manage your condition by preventing your body from attacking itself. But that can also make it harder for your body to attack infections as it should.

“When you have lupus, your immune system is dysregulated to begin with, and then when we treat you, you’re further immunosuppressed,” Dr. Littlejohn explains. “When I put someone on antibiotics for a fever or an infection, we often hold their lupus medications so their body can recuperate.”

Increased risk for heart disease

Lupus increases your risk for cardiovascular disease because it can cause inflammation in your arteries and heart. Over time, this inflammation can damage blood vessels, and it makes cardiovascular disease a leading cause of death for people with lupus. It can also lead to several serious complications, like:

• Narrow or blocked arteries
• Heart attacks
• Inflammation of the heart muscle
• High blood pressure in the lung arteries
• Inflammation of the sac around your heart

How to improve lupus outcome

Nearly 1.5 million people are living with lupus in the U.S. today. If you’ve been diagnosed, here’s what you can do to help slow down the disease and maintain your quality of life.

Testing and follow-up appointments

Being diagnosed early and receiving the right kind of treatment are key to helping you manage your condition and live a long, healthy life. This means you’ll have to follow up with your healthcare provider about any new health issues or symptoms and possibly see other specialists, like those who focus on the heart, lungs or kidneys.

“Some people come in with extremely active lupus, but with treatment, we see their lupus go into remission,” shares Dr. Littlejohn. “With the right treatments, lupus can stay very quiet for a very long time.”

Leading a heart-healthy lifestyle

Your lifestyle plays a big role in managing lupus, too. As heart disease is often the major cause of death, keeping your heart healthy and strong is key to longer life expectancy. You can improve your heart health by:

• Staying active
• Focusing on heart-healthy diets
• Getting enough sleep
• Taking prescribed medications

“Because people with lupus are prone to advanced heart disease, it’s very important to lead a heart-healthy lifestyle,” stresses Dr. Littlejohn. “You may be referred to other specialists, like a dietitian, who can help with nutrition, and a physical therapist, who can make sure your ligaments and muscles are strong enough for exercise.”

Preventing infections

When your immune system is suppressed (because of lupus or medications), you’ll want to do what you can to avoid getting sick. Make sure you’re up to date on vaccines, practice good hand hygiene and treat infections early when you do get sick. If you experience any new or worsening symptoms, talk with your healthcare provider right away.

“With this disease, education and knowledge are power,” says Dr. Littlejohn. “Anything you do to protect your overall health and wellness will go a long way to keeping lupus in remission.”