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People living with lupus are often familiar with its common symptoms, but complications can sometimes show up in the body without warning. “Tired of new complications,” one member wrote. Another said, “My early years of this illness were full of surprises.”
Systemic lupus erythematosus (SLE) — the most common form of lupus — is a chronic autoimmune disease that causes the body’s immune system to attack healthy cells and tissues. Here are six signs of common health issues that can be brought on by lupus.
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Lupus can cause inflammation that affects the heart muscle and other parts of the heart. About 50 percent of people with SLE develop heart problems, such as hypertension (high blood pressure) or inflammation. A fluttering heartbeat, also called heart palpitations, may be a sign of a heart issue. Shortness of breath can be another warning sign.
The most common heart problem people with SLE experience is atherosclerosis — a buildup of fats, cholesterol, and other substances in the arteries. This buildup can reduce blood flow to many parts of the body and lead to blood clots that cause a heart attack or stroke.
Atherosclerosis may not cause symptoms until an artery is blocked. If the blockage is near the heart, you may notice heart palpitations, shortness of breath, or chest pain.
Women ages 35 to 44 with SLE have a much higher risk of heart attack than their peers without lupus — about 50 times higher, according to the Hospital for Special Surgery. This increased risk is largely due to atherosclerosis and coronary heart disease, which can develop early in people with lupus. In fact, cardiovascular disease — not lupus itself — is the leading cause of death among people with SLE.
Myocarditis — inflammation of the heart muscle — affects about 5 percent to 10 percent of people with SLE. This heart condition may not cause symptoms, but when it does, it can lead to chest pain, a fast or fluttering heartbeat, and an enlarged heart that has trouble pumping blood properly.
About 15 percent of people with lupus develop Libman-Sacks endocarditis, which causes growths on the heart valve. If pieces of the growths break off and travel through the blood vessels, it can lead to stroke. Many people don’t have any symptoms, but treatment may include antibiotics and blood thinners.
Pericarditis — inflammation of the membrane surrounding the heart — affects about 25 percent of people with SLE and often coincides with a lupus flare.
One MyLupusTeam member shared, “I have heart problems as a result of lupus. I was having trouble breathing, and my doctor ordered a cardiac MRI with contrast, which showed inflammation around the lining of the heart. It’s called pericarditis.”
Pericarditis can cause shortness of breath and chest pressure or pain that gets worse when you’re lying down or bending forward. Treatment often includes nonsteroidal anti-inflammatory drugs (NSAIDs) or a short course of corticosteroids.
Foamy or bloody urine and swollen legs, feet, or ankles might be symptoms of lupus nephritis, one of the most common SLE complications. Lupus nephritis occurs when your kidneys become inflamed and can’t function properly. Up to 50 percent of adults and 80 percent of children with SLE develop lupus nephritis.
One MyLupusTeam member shared, “I have pain in my lower back, and I get cramps and nausea when I have to use the bathroom. I feel like I spend most of my days in the bathroom peeing.”
If you have symptoms of kidney damage, talk with your doctor to find out if you have lupus nephritis. They may order tests to check kidney function, such as:
If you have lupus and high blood pressure, your doctor may prescribe blood pressure medication. They may also suggest dietary changes, such as:
Treatment and lifestyle changes can help manage inflammation of the kidneys. However, from 10 percent to 30 percent of people with lupus nephritis develop kidney failure, where one or both kidneys no longer work on their own.
Symptoms of kidney failure include:
If you have these symptoms, contact your doctor right away or get emergency care.
Inflammation from SLE can affect the joints and surrounding tissues, usually in the fingers, wrists, and knees. Joints may feel warm, stiff, swollen, painful, or tender. Over time, this inflammation can lead to joint changes called Jaccoud’s arthropathy (lupus hand).
“I get severe wrist and finger pain,” one MyLupusTeam member shared. “When I first got sick, every joint hurt so bad, and my hands and feet were so swollen that I couldn’t wear shoes or walk. My hands were like sausage fingers. I couldn’t even do my personal toiletries or lift a cup.”
Lupus arthritis may look like rheumatoid arthritis, but it’s usually milder and less likely to cause permanent damage. Hand X-rays can identify signs that point to rheumatoid arthritis, such as joint erosion (wearing down of bone), which is uncommon in lupus.
Lupus arthritis is typically treated first with NSAIDs like ibuprofen. Antimalarial drugs, such as hydroxychloroquine, are also generally effective. Your rheumatologist will recommend treatments based on your symptoms and affected joints.
Inflammation caused by lupus and long-term corticosteroid use put people with SLE at an increased risk of bone loss. Bone loss is reported in 24 percent to 74 percent of people with SLE.
Osteoporosis — a condition in which bones lose strength and density — is one of the most common bone complications in SLE. Women with lupus are almost five times more likely to have bone fractures than women without lupus, according to the Lupus Foundation.
Common symptoms include a hunched posture, loss of height, and bones that break easily. Before starting corticosteroid therapy, talk with your doctor about whether the benefits outweigh the risks. Your care team should regularly check your bone density to help prevent osteoporosis.
Ways to prevent or treat osteoporosis include:
Another bone problem caused by SLE is avascular necrosis (AVN). This condition is caused by reduced blood flow to the bone, which can lead to bone damage. AVN may result from inflammation or from taking corticosteroids over time, leading to tiny bone cracks and surface collapse. Between 3 percent and 40 percent of people with SLE experience AVN.
AVN often affects the hips and can cause:
One MyLupusTeam member shared, “My hips feel like they are being crushed at times.”
Another said, “Prednisone destroyed my hips. I’ve had three surgeries in seven years.”
Pain relievers and physical therapy treat AVN in the early stages, while surgery may be required for late stages. If you notice pain or stiffness in your hips or other joints, talk to your doctor. Catching bone damage early can help prevent fractures.
Lupus can cause inflammation that affects the central nervous system (CNS), including the brain and spinal cord. This can lead to problems with memory, thinking, or concentration — often called brain fog or lupus fog. It’s one of the most common neurological symptoms of lupus, affecting up to 80 percent of people with the condition at some point. About 39 percent to 50 percent of people with SLE experience nervous system complications.
“Before I quit working, I was having a horrible time thinking of the simplest of words — very frustrating,” one member shared. “I still have moments when I’m forgetful and can’t think of words or get them out fast enough.”
Brain fog can happen on its own or be a sign of problems with your nervous system. You may also experience confusion, seizures, or stroke.
These symptoms may appear during flare-ups and often improve with treatment. Managing lupus with corticosteroids or immunosuppressive drugs can help reduce inflammation in the brain and other parts of the body. Strokes are treated with blood thinners, and seizures are treated with anti-seizure medications.
Lupus can damage the nerves and nearby tissues, causing a condition called peripheral neuropathy. This happens when inflammation affects the nerves outside the brain and spinal cord. Symptoms include:
Other nervous system problems related to lupus include headaches, depression, psychosis, and anxiety. One member shared, “I have headaches so bad they feel like my eyes are going to pop out!”
If you’re having neurological symptoms, it’s important to work with your care team — which may include a rheumatologist, a neurologist, and a psychiatrist — to find the cause and choose the right treatment.
Some symptoms may signal a serious medical emergency. Call 911 or go to the emergency room right away if you experience:
Lupus-related inflammation and long-term use of corticosteroids or immunosuppressants can raise your risk of serious health problems. It’s important to pay attention to early signs of complications and bring them up with your healthcare provider. Working with your care team to manage symptoms early can help prevent long-term damage and improve your quality of life.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
Are you living with any SLE complications? Let others know in the comments below.
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When I went through the diagnosis path, I had a lymphocytosis for 8 months on 17+ mg pred per day. My rheumy said "that shouldn't be possible" and sent me to a cancer clinic to get the lymphocytes… read more
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