Most people living with lupus are aware of the common symptoms of the condition, but complications may creep up without warning. For this reason, many members of MyLupusTeam have been caught by surprise by unexpected complications. “Tired of new complications,” one member wrote. Another said, “My early years of this illness were full of surprises.”

“My early years of this illness were full of surprises.”
— A MyLupusTeam member

Systemic lupus erythematosus (SLE) — the most common form of lupus — is a chronic autoimmune disease in which the body’s immune system attacks its own cells and tissues. SLE can result in a wide range of complications. Here are some signs of common health problems that can be brought on by lupus.

1. You Have a Fluttering Heartbeat

About 50 percent of people with SLE experience heart problems, which can include high blood pressure and inflammation in different parts of the heart.

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.”

Another member said, “I have been diagnosed with Libman-Sacks endocarditis. Lupus is attacking my mitral valve.”

The most common heart problem people with SLE experience is atherosclerosis, the buildup of fats, cholesterol, and other substances on the artery walls. This buildup can block blood flow to many parts of the body. If there’s a rupture, it can lead to blood clots, which can cause heart attack and stroke.

In one study, researchers found atherosclerosis in 37 percent of people with SLE compared to 15 percent of those without lupus. According to the Hospital for Special Surgery, young women with SLE are at increased risk of heart attack due to atherosclerosis and coronary heart disease. Specifically, women aged 35 to 44 years old diagnosed with SLE have a 50 times higher risk of heart attack than women in the same age group without SLE.

Inflammation caused by lupus can also affect the muscles of different parts of the heart, resulting in several heart conditions.

Endocarditis

Endocarditis is inflammation of the endocardium (the lining of the heart chambers and valves). Libman-Sacks endocarditis — a very rare form of endocarditis in which growths are found on the heart valve surface — affects between 6 percent and 11 percent of people with SLE. If parts of these growths break off and travel in the blood vessels, it can lead to a stroke. Antibiotics and blood thinners may be used to prevent infection and stroke.

Myocarditis

Myocarditis refers to inflammation of the myocardium (heart muscle), which can lead to an enlarged heart and decrease the organ’s ability to pump blood. It affects between 8 percent and 25 percent of people with SLE and is often asymptomatic (doesn’t cause any symptoms).

Symptoms of myocarditis include:

• Chest pain
• Rapid heartbeat
• Fluttering heartbeat

Pericarditis

Pericarditis refers to inflammation of the pericardium (the membrane surrounding the heart). It can lead to fluid collecting around the heart. According to Johns Hopkins Lupus Center, pericarditis is found in about 25 percent of people with SLE and often coincides with lupus flares. Although rarely seen at the time of diagnosis with lupus, pericarditis is one of the classification criteria that help healthcare professionals make a lupus diagnosis.

Pericarditis can cause pressure pain that gets worse when you’re lying down or bending forward, as well as shortness of breath. It’s often treated with nonsteroidal anti-inflammatory drugs (NSAIDs) or a short course of steroids.

2. You Have Foamy Urine

If you have lupus and experience foamy urine and swollen legs, feet, or ankles, you might have one of the most common complications of SLE — lupus nephritis. Lupus nephritis occurs when your kidneys become inflamed and can’t function properly. The kidneys make urine by filtering waste and excess water out of your blood. They also maintain your blood’s balance of minerals and salts, control your blood pressure, and create red blood cells.

As many as 50 percent of adults and 80 percent of children with SLE develop lupus nephritis.

As many as 50 percent of adults and 80 percent of children with SLE develop lupus nephritis.

Symptoms of lupus nephritis include:

• Urine that appears foamy
• Blood in urine
• Swelling in legs, feet, ankles, or face
• Frequent urination, especially at night
• High blood pressure

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.”

Another member said, “Right now, there is so much blood in the urine, it’s bright pink and foamy!”

If you have symptoms of kidney damage, talk to your doctor to find out if you have lupus nephritis. Your doctor may run the following tests:

• Urine test, to detect blood or protein in your urine
• Blood test, to measure creatinine, a waste product from the normal breakdown of muscles
• Kidney biopsy, to examine the kidney tissues for signs of damage

If you have lupus and high blood pressure, your doctor may prescribe blood pressure medicines.

Changing your diet by reducing sodium (salt) in your food, eating fewer foods high in saturated fats, reducing protein intake, and cutting down on alcohol can help you manage kidney problems.

Proper treatment and diet can help manage inflammation of the kidneys. However, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) found that 10 percent to 30 percent of people with lupus nephritis develop kidney failure. Symptoms of kidney failure include:

• Fatigue
• Muscle cramps
• Nausea, with or without vomiting
• Confusion
• Itchiness
• Shortness of breath

If you notice these symptoms of kidney failure, see your doctor right away or get emergency care.

3. Your Fingers Are Swollen

Inflammation caused by SLE can affect the joints and tissues surrounding them, resulting in misshapen joints. Inflammatory arthritis caused by SLE most commonly affects the fingers, wrists, and knees. Affected joints may feel warm, stiff, swollen, painful, or tender. Often, the condition can lead to what’s called Jaccoud’s arthropathy (lupus hand), or joint deformities.

"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."
— A MyLupusTeam member

One MyLupusTeam member shared, “I get severe wrist and finger pain. 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.”

Although the symptoms of lupus arthritis are similar to those of rheumatoid arthritis, they’re usually less severe and last for a shorter period of time. With the help of a hand X-ray, you can identify elements that appear only in rheumatoid arthritis, such as erosions (joint damage from inflammation).

In most cases, lupus arthritis is treated first with NSAIDs, such as ibuprofen. Antimalarial drugs, such as hydroxychloroquine, are generally effective in treating lupus arthritis. Your rheumatologist will recommend treatments based on the severity and the joints affected by lupus arthritis.

4. Your Bones Break Easily

Inflammation caused by lupus, as well as long-term use of corticosteroid drugs, such as prednisone, 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 the bones lose density and become more likely to break — is one of the most common bone complications caused by SLE. Women with lupus are almost five times more likely to experience bone fractures than women without lupus, according to the Lupus Foundation of America.

You may notice common symptoms of osteoporosis, such as stooping, bones that break easily, or losing height.

Before starting a corticosteroid therapy, talk to your doctor about whether the benefits outweigh the risks. Your medical care team should regularly evaluate your bone density to prevent osteoporosis.

Ways to prevent and treat osteoporosis in people with SLE include:

• Stopping smoking
• Cutting down on alcohol use
• Engaging in regular weight-bearing and muscle-building activities
• Taking calcium and vitamin D supplements
• Taking bisphosphonates (osteoporosis drugs)
• Reducing corticosteroid use
• Evaluating calcium, vitamin D, and bone density levels

Another bone problem caused by SLE is avascular necrosis (AVN) — weakening of the bone caused by reduced blood flow and increased swelling within the bone. AVN may be caused by the inflammatory status of a person diagnosed with lupus or by chronic use of corticosteroids. This condition leads to tiny cracks in the bone and a collapse of the bone surface. Between 0.8 percent and 33 percent of people with lupus experience symptomatic AVN.

AVN mostly affects the hip joints and can lead to:

• Joint pain when doing weight-bearing activities
• Joint stiffness
• Muscle spasms
• Limited movement of the joint

One member shared, “My hips feel like they are being crushed at times,” while another member said, “Prednisone destroyed my hips. I’ve had three surgeries in seven years.”

Health experts believe AVN occurs more often in people with active lupus. Pain relievers and physical therapy are used to treat AVN in the early stages, while surgery may be required for late-stage AVN.

Talk to your doctor if you notice symptoms of bone loss to prevent fracture. With proper treatment and lifestyle changes, bone complications of SLE can typically be successfully managed.

5. You Get Brain Fog

Inflammation caused by SLE can affect the central nervous system (CNS), including the brain and spinal cord. Nervous system complications from SLE are caused by disrupted blood flow to the brain and nerves. About 39 percent to 50 percent of people with SLE experience complications affecting the brain or nervous system (sometimes called CNS lupus).

Central Nervous System

Symptoms of CNS lupus include confusion, brain fog, seizures, and stroke. Many MyLupusTeam members shared their frustration with brain fog affecting their lives: “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.”

“I still have moments when I’m forgetful and can’t think of words or get them out fast enough.”
— A MyLupusTeam member

Another member shared, “I have been having the worst brain fog. Just completing my daily tasks like cooking or cleaning takes so much longer because I will walk into a room three or four times confused and forget why I went into the room in the first place.”

These CNS lupus symptoms coincide with flare-ups in other parts of the body, and the treatment involves managing the active lupus with corticosteroids and immunosuppressive drugs. Strokes are treated with blood thinners and seizures are treated with anti-seizure medications.

Nerves

Lupus can also damage the nerves and surrounding tissues in a condition called peripheral neuropathy. Symptoms of peripheral neuropathy caused by lupus include:

• Tingling or numbness
• Inability to move a part of your body
• Vision loss
• Pain in the face
• Ringing in the ears
• Drooping face and eyelids

Other nervous system problems caused by SLE include headaches, depression, psychosis, and anxiety. Many members shared that they experience severe headaches. One member exclaimed, “I have headaches so bad they feel like my eyes are going to pop out!”

Another shared, “The worst. Mine are pressure headaches. It feels like my head and face are in a vise and being squeezed to death.”

Figuring out whether these symptoms are caused by SLE can be challenging. Working with a group of healthcare professionals that includes a rheumatologist, a neurologist, and a psychiatrist will enable you to find the causes and appropriate treatments for the problems you are experiencing.

If you have any of the following symptoms, however, you should get medical help immediately:

• Seizures
• Inability to focus and maintain thoughts
• Poor memory for many days in a row
• Strange thoughts and delusions or hallucinations
• Severe headache with sudden onset
• Severe stiff neck with sudden onset
• Sudden face, arm, or leg numbness or paralysis
• Trouble walking, speaking, or seeing

Talk to Your Doctors About Your Symptoms

Widespread inflammation caused by lupus and long-term treatment with steroids and immunosuppressants put people with SLE at higher risks of a range of health problems. It’s important to pay attention to the early symptoms of these complications and discuss with your doctors how to treat and manage them to prevent more serious complications.

Find Your Team

MyLupusTeam is the online social network for people with lupus and their loved ones. On MyLupusTeam, more than 233,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

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