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Systemic lupus erythematosus (SLE) is a complex autoimmune disease that can affect any part of the body — including the skin, eyes, bones and joints. If you’re wondering what body systems lupus affects, the answer is that it can impact nearly every system in the body, making each person’s lupus experience unique.
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To ensure you get the right care for your individual needs, tell your rheumatologist what symptoms you’re experiencing and which parts of your body are affected. There is no cure for SLE, but medication and lifestyle changes can help you manage your symptoms and improve your quality of life.
Below are some of the ways SLE may affect various parts of your body.
Skin rashes are a common symptom of lupus. A facial rash across the nose and cheeks (often called a butterfly rash or malar rash) is one of the more well-known skin symptoms of lupus. SLE can also cause sores, lesions, scaly areas, alopecia (hair loss), petechiae (tiny spots), an itchy scalp, and other skin issues anywhere on the body. In some cases, SLE causes fingernails and toenails to fall off or become discolored.
“I have rashes that peel, but even on my face and scalp, I just have horribly dry skin,” said one MyLupusTeam member. Another shared, “I get blisters on my cheeks and nose after sun exposure. My rheumatologist advised me to wear hats, sunglasses, and a high-SPF sunscreen.” A third said, “My fingernails are separating from the nail bed.”
While skin symptoms are common with SLE, the location and severity can vary from person to person. Your rheumatologist may refer you to a dermatologist for help.
SLE can affect the central nervous system, which includes the brain and spinal cord. This can lead to headaches, mood disorders, and other neurological issues. It can also cause a type of cognitive dysfunction called “brain fog” or “lupus fog,” which includes sleeplessness, memory problems, difficulty finding the right words, speech issues, and more. In rare cases, SLE can cause a serious mental health disorder called psychosis.
“I often have sleepless nights,” said one MyLupusTeam member. Another shared, “I have migraines.” A third said, “I feel like I’ve been in a brain fog for a year straight. I’m tired of explaining why I can’t remember things.”
Approximately 20 percent of people with lupus experience dry eye syndrome. Lupus’ effect on the eyes can include blurry vision, a burning sensation, or the feeling that something is in your eye. SLE can also lead to swollen eyelids and swelling around one or both eyes. In rare cases, lupus can cause vision loss. It’s important to get an annual eye exam to keep your eyes healthy.
“My eyes are burning and itching,” one MyLupusTeam member shared. Another asked, “Anyone else having trouble with dry eyes?” A third said, “I have had a headache and irritated eyes since last night.”
SLE can cause ulcers and lesions in the mouth and nose. It can also lead to dry mouth, gum disease, cavities, cracked lips, and other health concerns.
“I have mouth sores and bumps on my tongue,” one MyLupusTeam member shared. “I get sores in my nose and mouth,” said another. “I always have dry mouth,” shared a third.
If you have oral health issues caused by SLE, find a dentist with experience caring for people with lupus. Your dentist should work with your other healthcare providers to help manage your symptoms and help you find relief.
According to the Lupus Foundation of America, inflammation in the mouth is linked to an increased risk of lupus flares. By taking care of your oral health, you’re taking care of your overall health.
SLE is a risk factor for heart disease and can affect the entire cardiovascular system, including the heart, blood vessels, and blood. When lupus damages the inside of blood vessels, it can lead to the buildup of fat and other materials, which reduces blood flow and may eventually cause a heart attack.
SLE can also lead to inflammation in different parts of the heart:
These and other cardiovascular issues caused by SLE can lead to blood clots, chest pain, high blood pressure, anemia (low red blood cell levels), and other issues. Depending on the severity of your symptoms, your rheumatologist may recommend adding a cardiologist to your care team.
“When I have chest pain, I have a hard time regulating my blood pressure,” said one MyLupusTeam member. Another said, “I’ve had blood clots twice this year.”
Approximately 50 percent of people with SLE experience lung issues. One common lung problem in people with SLE is pleurisy, which is an inflammation of the pleura (the lining of the lungs). If you experience chest pain when you take a deep breath, ask your doctor about pleurisy. SLE can also lead to pulmonary hypertension (high blood pressure in the arteries of the lungs), reduced chest expansion, a feeling of breathlessness, and other pulmonary complications.
“I’ve been having pretty bad shortness of breath lately,” said one MyLupusTeam member. Another shared, “I told my doctor I was concerned about how much my chest hurts. He said I have pleurisy, and it will eventually go away.”
Chest pains can be a sign of a life-threatening condition. If you experience new or sudden chest pains, go to your nearest emergency room.
One of the more severe complications of SLE is a kidney disease called lupus nephritis. The relationship between lupus and the kidneys is important because the immune system mistakenly attacks the kidneys, leading to inflammation and reduced kidney function. Over time, lupus nephritis can lead to kidney damage and, in some cases, kidney failure. If you have lupus nephritis or other renal symptoms, your rheumatologist might refer you to a nephrologist (kidney doctor) for additional testing and treatment.
“I started treatment for lupus nephritis today,” one MyLupusTeam member shared. Another said, “I have horrible pain in my kidneys. I’m worried about kidney failure and kidney damage.” A third said, “I have lupus nephritis. I received my second kidney transplant three years ago and am so very grateful for my gift.”
SLE can affect the digestive system, which includes the esophagus, stomach, intestines, liver, pancreas, and other tissues and organs. The digestive issues caused by SLE are diverse and can overlap with symptoms of other diseases and health conditions. If you have abdominal pain, fever, nausea, diarrhea, gas, chronic cough (due to acid reflux), or other unexplained symptoms, schedule an appointment with your healthcare provider. These symptoms are not always directly caused by the disease itself — sometimes they are related to medications and coexisting conditions.
“I am always nauseous and feel sick to my stomach,” said one MyLupusTeam member. “My acid reflux is acting up bad,” said another. A third said, “My doctor ordered a fasting blood test to see how my liver is functioning.”
Pain and swelling in the joints are common symptoms of SLE. This autoimmune disease can also cause arthritis, carpal tunnel syndrome, and osteoporosis, which weakens the bones and increases the risk of breaking or fracturing them. In addition to prescribing medical treatment, your doctor may recommend lifestyle changes to protect your bones and joints. In most cases, lupus-related joint problems don’t cause permanent damage.
“My recent bone density test indicated I have severe osteoporosis,” shared one MyLupusTeam member. Another said, “My hip socket hurts, my neck is stiff, and the joints in my hands hurt. Does anyone else have trouble with joint pain?”
The word “systemic” in systemic lupus erythematosus means SLE can affect the entire body. In addition to the organs and organ systems listed above, SLE can cause inflammation and tissue damage in the nervous system and urinary system and can cause leg swelling, depression, seizures, and more.
In some cases, what may seem like symptoms of lupus can actually be side effects of lupus medications or coexisting conditions. For this reason, it’s important to work closely with your care team to identify the underlying issues to ensure you receive appropriate care. Lupus is a complex disease best treated by autoimmune disease experts.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
Are you living with SLE? How does it affect your body? Let others know in the comments below.
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