Most people living with lupus are aware of the common symptoms of this condition, but unexpected complications may creep up without warning, taking many members of MyLupusTeam by surprise. “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 in which the body’s immune system attacks its own cells and tissues. It can result in a wide range of complications. Learn how to recognize the signs of some of the common health problems that can be brought on by lupus.

1. You Have Fluttering Heartbeats

About 50 percent of people with SLE experience heart problems, which can include high blood pressure and inflammation in different parts of the heart, according to Hospital for Special Surgery (HSS).

One 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. Young women with SLE are at very high risk, according to HSS, with those between the ages of 35 and 44 having 50 times higher risk 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 about 6 percent to 11 percent of people with SLE, according to StatPearls. 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 to 25 percent of people with SLE, according to a research article in Cureus, and it is often asymptomatic (doesn’t cause any symptoms).

When myocarditis is easily seen during a clinical examination, the symptoms include:

• Chest pain
• Raid 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. It is found in about 25 percent of people with SLE, according to Johns Hopkins Lupus Center, and it often coincides with lupus flares.

Pericarditis can cause pressure pain that gets worse when you’re lying down or bending forward, as well as shortness of breath. Pericarditis is 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’ main function is to filter extra water and waste out of your blood to make urine. They also keep the right balance of salts and minerals in your blood, control your blood pressure, and make red blood cells.

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

• Foamy urine
• 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 is 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

Lupus nephritis is treated with corticosteroids like prednisone and immunosuppressive drugs like cyclophosphamide (Cytoxan), mycophenolate mofetil (CellCept), and hydroxychloroquine (Plaquenil).

To control blood pressure, your doctor may prescribe blood pressure medicines, including:

• ACE inhibitors
• Angiotensin-receptor blockers (ARBs)
• Beta-blockers
• Calcium channel blockers
• Diuretics

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

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

• Fatigue
• Muscle cramps
• Nausea and vomiting
• Confusion
• Itchy skin
• 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 joints in your fingers, wrists, and knees. They may feel stiff, tender, painful, warm, or swollen. Often, the condition can lead to what’s called Jaccoud’s arthropathy (lupus hand), or joint deformities.

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

In most cases, lupus arthritis is treated first with NSAIDs. Antimalarial drugs such as hydroxychloroquine are 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 five times more likely to experience bone fractures than women without lupus, according to HSS. You may notice these common symptoms:

• Back pain
• Loss of height
• Stooped posture
• Easily broken bones

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

• 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

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. 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, according to research in the International Journal of Molecular Sciences.

AVN mostly affects the hip joints and can lead to the following:

• 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 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 and 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.”

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 treating 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
• An 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 health care 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 of stroke or seizure, however, you should get medical help immediately:

• Seizures
• Inability to focus and maintain thoughts and/or poor memory for many days in a row
• Strange thoughts and delusions or hallucinations
• Sudden and severe headache
• Sudden and severe stiff neck
• Sudden numbness or paralysis in the face, arm or leg
• Trouble seeing, speaking, or walking

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 is 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 225,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

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