While lupus can be an on-going source of discomfort, its outlook is generally positive. With appropriate treatment and frequent clinical follow-up, lupus organizations estimate that 80 to 90 percent of people with lupus will have a normal life expectancy.
The effects of lupus depend on the severity of the disease. Some people who have severe flare-ups could be at greater risk of their lupus being life-threatening.
This article looks at whether lupus can lead to death, how it affects different areas of the body, and the steps an individual can take manage their lupus and ensure a normal life expectancy.
People with lupus can expect a normal lifespan and good quality of living.
The life expectancy of lupus is hard to calculate, as people experience different symptoms, effects, and complications.
Early diagnosis and the availability of more effective treatments mean that clinicians no longer consider lupus to be fatal for all people.
People who experience extreme flare-ups are more likely to have other life-threatening difficulties, such as internal organ and tissue damage. The life expectancy of lupus depends on the severity of the disease, the immune response to treatment, and other factors.
For people with lupus, some treatments can increase the risk of developing potentially fatal infections. However, the majority of people with lupus can expect a normal or near-normal life expectancy.
Research has shown that many people with a lupus diagnosis have been living with the disease for up to 40 years.
As research progresses, scientists hope to identify people who have a risk of lupus through genetic studies. This will allow doctors to begin preventing known complications much earlier and further improve the life expectancy.
Researchers also hope to find the molecular pathways that cause lupus so that they can target them for new therapies.
What is lupus?
Lupus is a long-term autoimmune disease, in which the immune system attacks healthy cells, tissue, and organs, causing inflammation. The symptoms and affected organs differ from person to person.
Experts are unsure what causes lupus, but they think the reasons could be linked to genes, environment, and hormones.
The main symptoms of lupus are tiredness, joint pain, and rashes. Some people may have very mild symptoms. Other times, lupus can flare up and make existing symptoms more severe or cause the person to develop new symptoms.
The American College of Rheumatology list various symptoms that doctors use to guide lupus diagnosis.
- a butterfly-shaped rash over the cheeks
- a raised oval or round rash
- a rash that appears when the individual exposes their skin to the sun
- mouth or nose sores that last from a few days to over a month
- lung or heart inflammation that causes chest pain while deep breathing
- blood or protein in the urine
- seizures, strokes, or psychosis
- abnormal blood test results
A person with four or more of these symptoms should consult their doctor.
Lupus affects almost every part of the anatomy. The handling of any complications might play a role in how long the person with the condition lives and the quality of their life.
Some of the ways that lupus may affect the body are described below.
Brain and nervous system
Lupus can impact negatively on brain function.
According to the Lupus Research Alliance, about half of all people with lupus experience cognitive difficulties with thought processes. Around 1 in 5 people experience headaches, memory loss, mood swings, and stroke.
Blood clots might also develop. These might also lead to dangerous complications, such as stroke.
If headache pain does not improve after taking over-the-counter (OTC) medicine, people with lupus should tell their doctor. Vasculitis, or inflammation of the blood vessels, can cause some headaches.
Eye problems are common in people with lupus, including:
- changes in the skin surrounding the eyes
- dry, "gritty" eyes, which occur in 25 percent of people with lupus
- inflammation of the white protective layer of the eye
- changes to blood vessels in the retina, occurring in up to 28 percent of patients
- damage to nerves that control eye movement and vision
- Sjögren's syndrome, a condition in which a person cannot produce enough tears, is apparent in 20 percent of lupus patients
- impaired vision
- vision loss
Lupus can lead to a variety of symptoms in the mouth. Mouth sores, also known as oral lesions or ulcers, are among the most common symptoms and occur in around 4 to 45 percent of people with lupus.
Drugs used to treat lupus, such as corticosteroids, can sometimes cause the side effects of mouth dryness, cold sores, swelling, and yeast infections.
Many people with lupus develop skin problems, and rashes or sores are very common. Up to 70 percent of individuals with lupus are sensitive to ultraviolet (UV) rays in sunlight.
A butterfly-shaped rash appears across the cheeks and nose in around 40 percent of people. This rash is usually either blotchy or red and slightly raised across the whole area.
Blood disorders are common in people with lupus. Red blood cell, white blood cell, and platelet disorders occur frequently.
The main blood problems include:
- anemia, or a shortage of red blood cells
- thrombosis, in which blood clots form
- vasculitis, or the inflammation of blood vessels
- thrombocytopenia, a condition that causes low levels of platelets
- leukopenia and neutropenia, two conditions that lead to low levels of white blood cells
More than half of all lupus patients will develop a heart abnormality at some stage.
Around 50 percent of people with lupus experience lung problems. Inflammation can affect the lungs, the lining of the lungs, lung blood vessels, and the diaphragm, causing:
- pleuritis, or swelling of the membrane surrounding the lungs
- pneumonitis, an inflammation of lung tissue
- chronic diffuse interstitial lung disease, in which scar tissue prevents oxygen from traveling to the blood from the lungs
- pulmonary embolism, where a blood clot blocks the flow of blood from the heart to the lungs.
Lupus that affects the kidneys is called lupus nephritis. It is thought that around 1 in 3 people with lupus might develop this disease.
People with lupus nephritis might experience the following:
- weight gain
- puffiness in the feet, ankles, legs, and hands
- blood in urine
- high blood pressure
Kidney disease can increase the risk of potentially fatal conditions, such as heart attack and stroke, and might progress to complete kidney failure.
The gastrointestinal system stretches from the mouth to the anus. It includes the organs that digest food and drink and dispose of waste.
Many people with lupus experience gastrointestinal problems, as an effect of the disease and a side effect of the treating medication.
Bones and muscles
For more than half of people who develop lupus, joint pain is one of the first symptoms they may experience. More than 90 percent of people with lupus have joint and muscle pain at some stage of the condition.
Corticosteroid medications can cause high blood pressure in pregnant woman and increase their risk of gestational diabetes.
Many women who have lupus give birth to full-term babies without any difficulties. Women with lupus should contact their doctor before becoming pregnant to ensure the best possible outcome for both mother and child.
Living with lupus
Regular exercise can help improve quality of life for people with lupus.
While many people with now have a normal life expectancy, it is also important to ensure that they keep quality of life to a maximum.
Living with lupus can be challenging. Some of the medications that treat the disease can cause other problems. To enjoy a good quality of life with lupus, it is important to work with a doctor and ensure the right balance of drugs.
While drugs are an important part of controlling lupus, people with lupus can take other steps to manage symptoms and improve both their quality of life and life expectancy.
- Regular exercise: This reduces muscular stiffness, prevents osteoporosis, relieves stress, and protects the heart.
- Quitting smoking: This can help prevent infections and heart attacks, decreases the risk of pneumonia, bronchitis, and coronary artery disease
- Resting: This relieves fatigue, reduces the risk of flare-ups, and decreases sensitivity to pain.
- Avoiding direct sun and fluorescent light exposure: This helps protect against UV light sensitivity.
- Vitamin D: This prevents osteoporosis from reduced sunlight exposure.
- Washing the hands regularly: This helps prevent infection in people who are particularly susceptible.
- Managing pain: Hot showers, baths, and other stress relievers, including acupuncture, tai chi, yoga, and chiropractic, can support any prescribed pain medication in a natural way.
- Managing mental health: Seeking advice from a mental health expert can help with symptoms of depression.
The bottom line
Lupus is not an easy disease with which to live, but people can successfully manage the condition. Most people with lupus can expect to live a long and full life.