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Lupus Outlook: How Does It Affect My Lifespan?

Lupus isn’t lethal

Lupus is an autoimmune disease that causes the immune system to attack the body’s organs. In severe cases, organs damage and failure can occur. Over 90 percent of people with lupus are women between the ages of 15 and 45. 

Historically, lupus caused people to die young, primarily from kidney failure. Today, with careful treatment, 80 to 90 percent of people with lupus can expect to live a normal lifespan.

“We have found that with treatment, Lupus patients are able to live longer,” said Dr. Olivia Ghaw, Assistant Professor of Medicine, Division of Rheumatology at the Icahn School of Medicine at Mount Sinai, in an interview with Healthline. “They are able to live with less disability and morbidity.”

Flares

Lupus commonly causes some amount of inflammation. Sometimes lupus can flare up, making symptoms worse. Flares can include joint pain, skin rash, and organ troubles, particularly in the kidneys.

Medication and lifestyle changes can control flares and prevent them from causing lasting organ damage. You’ll want to work closely with your doctor to address these symptoms.

Kidneys

Kidneys are the organs most commonly affected by lupus. Long-term inflammation in the kidneys causes damage. If enough of the kidney becomes scarred, it will begin to lose function.

By catching a flare-up early and treating it with the right medications, you can protect your kidneys from damage.

Heart

Now that severe lupus is treated aggressively, people are no longer dying from lupus itself or from kidney failure. However, people with lupus are still at increased risk of heart disease.

Lupus can cause inflammation of the heart, resulting in an increased rate of heart attacks and artery disease, even in young patients in their 20s. Inflammation of the lining around the heart can also cause chest pain (pericarditis).

Blood

People with lupus have a greater likelihood of developing anemia or blood clots. Some people with lupus also have antiphospholipid antibody syndrome (APS). APS increases the risk of developing blood clots and miscarriages. 

Blood clots can occur anywhere in the body, including the lungs, legs, or even the brain.

Brain

Sometimes, the inflammation occurs in the brain. This can cause headaches, mental problems like memory loss or poor concentration, seizures, meningitis, or even a coma. 

Some lupus patients also experience changes in their mood, particularly with irritability, depression, and anxiety.

Lungs

Some lupus patients develop inflammation in the lining around the lungs. This is called pleuritis. It causes sharp chest pains when you inhale.

If the inflammation spreads to the lungs themselves, they can become scarred. Lung scarring decreases the amount of oxygen that the bloodstream absorbs.

Joints

People with lupus commonly have inflammatory arthritis. They wake up in the morning with stiffness and swelling in their joints, usually in the small joints of the hands. “Sometimes the pain can be very disabling,” said Ghaw.

Unlike some other forms of arthritis, inflammatory arthritis from lupus rarely deforms the hands.

Digestive system

The inflammation from lupus can spread to the digestive system, hitting organs like the pancreas and the liver.

Lupus can also cause the gut to leak protein. This is called protein-losing enteropathy. This condition causes diarrhea and reduces the amount of nutrients that get absorbed.

Infection

The same drugs that prevent the immune system from attacking the body also impair its ability to fight off infections. People with lupus are highly prone to infections, including skin infections and urinary tract infections. They could even get sepsis, in which the infection spreads through the entire body through the bloodstream.

“Because the body’s immune system is weakened by the drugs, the body is unable to fight off even a simple infection, and a simple infection can become a complex infection, leading to death,” said Ghaw.

You asked, we answered

  • What are some ways a person with lupus could prevent infections, or prevent an existing infection from becoming severe?
  • It’s important to catch infections early. If you have an infection, make sure to rest, maintain a clean diet, and manage your stress. If symptoms persist, see your doctor to determine if you need antibiotics. Use the lowest dose and shortest course of immune suppressive medications possible, as recommended by your doctor. The pneumococcal vaccine can also help prevent certain infections.

    - Nancy Carteron, MD, FACR
    Disclaimer: Answers represent the opinions of our medical experts. All content is strictly informational and should not be considered medical advice.

Pregnancy

Women with lupus tend not to have trouble getting pregnant. However, conceiving when lupus is quiet often results in healthier pregnancies. Lupus does cause some risk of going into labor early. If antibodies like SSA (Ro) or phospholipid are present, women will be seen by high-risk pregnancy specialists to prevent complications.

Because lupus is influenced by female sex hormones, pregnancy can affect the severity of a woman’s lupus. According to Ghaw, about a third of lupus patients experience a flare-up during pregnancy, a third experience no change, and a third actually see their symptoms improve.

Lifestyle changes

Certain lifestyle changes can help improve outcomes of lupus. The greatest risk is cardiovascular disease, and for this reason Ghaw recommends eating a heart-healthy diet. 

Stopping smoking and losing weight if you’re overweight both lead to much better outcomes. Regular, low-impact exercise also tends to help with joint health as well as weight loss.

“People should be in very good contact and communication with their rheumatologist,” said Ghaw. “It’s much easier to prevent complications of lupus rather than treat them afterward. Hopefully, with lifestyle modifications and the right modifications, they can attenuate the risk of these complications in the future.”

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