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Psychological Well-Being Associated With Quality Of Life In People With Systemic Lupus Erythematosus

Inside Lupus Research (ILR): Disease Management News

In people with systemic lupus erythematosus (SLE), a new study found an association between quality of life (QOL) and the ability to manage tough situations (also called psychological capital), post-traumatic growth, and social support. Lupus greatly impacts the QOL for people with lupus, including physical, emotional, and financial health. 

Researchers reviewed the records of 330 people (75 male; 255 female) with SLE in China and uncovered a positive correlation between a person's ability to overcome challenges and approach dilemmas with a positive mindset, their ability to embrace the trauma caused by lupus, and their ability to access assistance, and QOL. 

The study offers healthcare professionals (HCPs) areas to target for intervention. The researchers encourage HCPs to prioritize social support levels for people with SLE to ensure they're receiving comprehensive physical and psychological care, supporting their appropriate treatment. Learn more about managing your mental health with lupus.

Read the study


What Are The Potential Complications Of Lupus?

Because lupus is a systemic disease that affects multiple systems, it can cause complications throughout your body, including your kidneys, heart, lungs, eyes, and bones.

Lupus is a complex autoimmune condition that affects multiple areas of your body. The term "lupus" often refers to systemic lupus erythematosus (SLE), the most common form of this condition.

Like other autoimmune diseases, lupus develops when your immune system mistakenly attacks healthy tissues. Since lupus can affect more than one area in your body, it's common to have several related symptoms.

It's also possible to develop multiple types of complications from this chronic condition. This article reviews the most common lupus complications, so you can talk with a doctor about further treatment and prevention to help prevent permanent damage.

Also called lupus nephritis, kidney disease may develop from long-term inflammation and damage to your kidneys. This can result in permanent loss of kidney function and then failure.

According to a 2020 review, lupus nephritis is the most common organ-related complication of this autoimmune condition. For this reason, a doctor may regularly request urine and blood tests to help monitor your kidney function.

Lupus can damage blood cells due to damage to your bone marrow. This can mean lower levels of red and white blood cells as well as blood platelets. In turn, related blood disorders may develop, such as:

Additionally, lupus may increase your risk of vasculitis, a type of inflammation of the blood vessels.

Lupus can also affect your heart, leading to inflammation of the heart muscle (myocarditis) or inflammation around its lining (pericarditis). Long-term inflammation can lead to permanent heart damage.

People with lupus are also more likely to develop atherosclerosis and coronary artery disease because of heart inflammation.

To help prevent further heart-related complications from lupus, a doctor may recommend lifestyle changes, such as a balanced diet, regular exercise, and quitting smoking. They'll also regularly check your cholesterol levels and blood pressure.

Lupus may increase your risk of heart attack and stroke. According to a 2023 review, people with SLE may have double to triple the risk of such a serious cardiovascular event.

A heart attack associated with lupus may also occur from related coronary artery disease, in which your arteries become blocked from plaque buildup.

Some lupus complications may be related to medications used to treat it. Such is the case with osteoporosis, a common complication associated with long-term steroid use.

Osteoporosis may also increase your risk of bone fractures, with your hips particularly at risk. A 2019 study found that adults with newly diagnosed lupus were 62% more likely to experience a hip fracture than adults who did not have lupus.

To help prevent lupus-related osteoporosis, a doctor may recommend a calcium-rich diet along with regular exercise. They may also prescribe osteoporosis medications to help prevent further bone loss.

Lupus can also cause inflammation within lung tissues, particularly the pleura, which protects the lungs from your chest wall. This inflammation, also called pleurisy, is the most common lung complication associated with lupus.

Over time, pleuritis can lead to tissue damage, which can eventually make it difficult to breathe. You may also feel chest pain when you inhale.

Treatment for pleuritis varies on the severity and may include:

  • antibiotics to prevent infection
  • painkillers for chest pain
  • hospitalization for severe breathing problems
  • Lupus may also attack tissues around your eyes, leading to related disorders. About one-third of people with lupus have ocular problems.

    Dry eye is among the most common eye complications, affecting about 1 in 5 people with lupus.

    Certain eye disorders may also develop from long-term steroid use for lupus. These include cataracts and glaucoma.

    To help detect potential eye problems from lupus, experts recommend you see an eye doctor for an exam once a year.

    People with lupus also have increased risks of developing anxiety and depression. High stress rates are also common. Depending on the severity, a doctor may suggest a combination of medications, lifestyle changes, and behavioral therapy.

    You may consider talking with a doctor if you're planning a pregnancy. They can help you monitor your condition while also ensuring a healthy pregnancy.

    While it's possible to have a healthy pregnancy with lupus, you and your baby will likely have better outcomes if your lupus is well-managed. Possible complications may include:

    Below are some of the most frequently asked questions about lupus complications to consider:

    What is the most serious complication of lupus?

    The most serious complications of lupus involve major organs, including your heart, kidneys, or lungs. While treatment can help prevent disease progression, complications from lupus may be fatal if the condition is left untreated.

    Does lupus get progressively worse?

    Like other autoimmune diseases, lupus can get progressively worse, especially without treatment. It can eventually affect multiple organs and cause related complications.

    Receiving a timely and accurate diagnosis is another factor in your outcome with lupus. Experts think that more than half of people with lupus receive an incorrect diagnosis and that it may take an average of 6 years after first experiencing symptoms to receive a lupus diagnosis.

    Does lupus qualify for disability?

    For many people, lupus can cause significant economic effects due to health complications that make it difficult to work. If you fall into this category, you may qualify for disability benefits through the Social Security Administration. You can learn more and apply here.

    If you or a loved one has lupus, you might first be focused on controlling symptoms. As with other autoimmune diseases, though, it's important to be aware of the possible complications so a doctor may be able to help you manage or prevent them.

    While there's no cure for lupus, treatment can help reduce your risk of some of the most common and serious complications. Treatment can also help prevent or reduce the rate of damage to tissues and organs and may help you enter remission.


    'I Cope With My Lupus And Hashimoto's Symptoms Through Ultra-Running'

    In the summer of 2022, I planned to do five 100-mile races in five months to celebrate my 40th birthday. In mid-April I completed the first in this series, the Umstead 100, running my fastest 100-miler time. I felt amazing.

    By June, when I was slated to run the Kettle Moraine 100, I started having persistent symptoms: fatigue, joint pain, and Raynaud's (a condition where some areas of the body feel numb and cool in certain circumstances). I couldn't mentally force myself through this race. I didn't even make it past mile seven. I knew something was wrong.

    In October, I saw a rheumatologist who confirmed that I had lupus as well as another autoimmune disorder.

    I was diagnosed with antiphospholipid syndrome (a blood clot disorder), which co-occurs with lupus. Honestly, it wasn't surprising, since I was a walking list of lupus symptoms. When you've had highs and lows in your health—I also have Hashimoto's disease and a Crohn's–colitis spectrum issue—and have been told so many times nothing is wrong, getting an answer feels like a reason to celebrate.

    But just because I had an answer didn't mean I had a solution. Everybody's lupus journey is different. That's the hardest part: No one can tell you what your body is going to react to. Sometimes it feels as if I have to get a PhD in rheumatology to help myself.

    I also realized that if I waited until I woke up in the morning feeling good before I went on a run, I'd probably never run again.

    Continuing to move for health is more important. If I can take away the judgment of wishing I was faster, and still get joy out of it, that's a win.

    While I haven't had the easiest life, ultra-running still feels like the vacation from the hard stuff. My mantra at the Javelina Jundred 100 Miler last year, three weeks after my diagnosis, was "This is not hard; lupus is hard." There are some people who have lupus and can't even get out of bed, so if I am in a position of being able to run and it's a 100-miler, I don't really even need to tap into my mental stores. I'm going to save that for when this disease is actually tough.

    a woman standing next to a flag

    Carmen Chan

    That's not to say I don't have bad days. I have day-to-day variability, as well as flares, which is when your symptoms get so bad they feel, at least for me, like having COVID, the flu, and mono at once.

    In these moments, I don't want to feel sick. I don't want to feel this way. But I try not to go down a rabbit hole. I ask myself what I need right now to make myself feel better. Sometimes that means crying; other times, it's running hard.

    I've had runners reach out to me for advice and resources. Even people who don't have lupus, like my Further teammate Vriko, are extremely supportive; she'll write my name on her hand for runs and say, "This run is for Devon." So when I'm having a tough day, I pull from the strength of others and from my teammates who persevere in the face of their unique obstacles.

    Devon Yanko, 41, is an ultra-runner, run coach, Lululemon ambassador and member of the Further team.






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