Life with lupus can be unpredictable. With this condition, your immune system can’t tell the difference between foreign invaders and healthy tissue, which can lead it to inappropriately attack and destroy healthy tissue. This can cause pain and inflammation in different parts of your body, along with a variety of other issues.
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“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, heart problems, lung problems and joint pain.”
Across the United States, nearly 1.5 million people are living with systemic lupus erythematosus, the most common form of lupus. But scientific advancements have come a long way throughout the last few decades, and the prognosis for people with lupus is better than ever before.
These days, thanks to medical advancements, most people who have lupus can expect to live a standard lifespan with proper and ongoing treatment.
“Back in the 1950s, survival rates were about 50%, but as of 1995, they are higher than 95%,” Dr. Littlejohn shares. “Lupus can be fatal if it’s not treated properly or caught early enough, but there’s so much today, in terms of treatment and screening, that can help people survive and thrive.”
Though there’s no cure for lupus, remission is possible.
“Some people come in with extremely active lupus, but with treatment, we see their lupus go into remission,” she continues. “We don’t like to use the word ‘cure,’ but lupus can stay very quiet for a very long time.”
You may need to take medication for life, or you may be able to eventually stop taking it, with your healthcare provider’s guidance and supervision.
It’s important to reiterate: Lupus isn’t typically fatal. But it can be. Lupus can affect multiple organs and organ systems, and the symptoms and outcomes of the disease can range from mild joint and skin problems to life-threatening conditions.
“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 and people assigned female at birth(AFAB) who are between the ages of 15 and 44 and whose lupus starts out very severe. Active, severe lupus can damage your kidneys, heart, lungs and brain.
“The prognosis 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 clarifies.
She explains some of these potentially life-threatening effects.
Kidney failure used to be the most common cause of death in people with lupus, but luckily, medical advances have made kidney issues more treatable than ever before. But it’s important that lupus nephritis — lupus in the kidneys — is diagnosed early and treated quickly.
“Lupus nephritis is one of the most potentially devastating manifestations of lupus,” Dr. Littlejohn states. And though it can happen to anyone, it’s more common in women and people AFAB. And the disease is most prevalent and most severe among Black, Asian and Hispanic women.
Signs that your lupus is affecting your kidneys may include foamy urine, fever, weight loss, rash and feeling ill with arthritis. Your healthcare provider can detect early signs of kidney disease by doing a urinalysis (pee test), and then, they’ll determine your course of treatment.
For people with lupus, the leading cause of death isn’t lupus. It’s actually cardiovascular disease. Lupus can cause inflammation in your arteries and heart, which can lead to:
“Because people with lupus are prone to advanced heart disease, it’s very important to lead a heart-healthy lifestyle,” Dr. Littlejohn stresses. “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.”
Lupus can make you more prone to infections because it weakens your immune system — the part of your body that’s supposed to help you fight infections.
And there’s another issue, too: The medications used to treat lupus are immunosuppressants. They help you manage your lupus by preventing your body from attacking itself, but that also makes it harder for your body to attack unwelcome intruders — like infections.
“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 one of my patients is put on antibiotics for a fever or an infection, we often hold their lupus medications so their body can recuperate.”
About 40% of people who have systemic lupus erythematosus also develop neuropsychiatric lupus. This is when lupus affects your central nervous system, like your brain, spinal cord and nerves.
Researchers continue to explore how and why lupus affects the central nervous system. But it’s thought to be related to inflammation at the blood-brain barrier, where cells form a wall of defense around your brain to keep it safe and protected.
Fortunately, severe, brain-related complications are rare. But neuropsychiatric lupus can cause:
Symptoms like brain fog, migraines and forgetfulness are much more common, Dr. Littlejohn says.
Being diagnosed early and receiving the right kind of treatment are key to helping you manage your lupus — and managing your lupus is the key to longevity. When your condition is well-managed, it doesn’t cause damage to your body.
“Lupus can affect several important organs and lead to serious complications, so it’s important to get a proper diagnosis and treatment,” Dr. Littlejohn urges. “It’s also a multidisciplinary disease, which means that a lot of specialists need to be involved.”
This means following up with your healthcare provider about any new health issues or symptoms and possibly seeing other specialists, like those who focus on the heart, lungs or kidneys.
Your lifestyle plays a big role in managing your lupus, too. Staying active, eating a healthy diet, getting enough sleep and taking your medications as directed can all help keep your lupus well-managed.
Dr. Littlejohn emphasizes, “With this disease, education and knowledge are power.”