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Understanding Lupus Life Expectancy

Living with lupus is a journey marked by uncertainty. One aspect that often weighs on individuals is the question of life expectancy. Determining life expectancy in lupus is a nuanced task.

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Donald Thomas, MD author of The Lupus Encyclopedia for Gastrointestinal symptoms in lupus blog post

This blog on “Understanding Lupus Life Expectancy” was edited and contributed to by Donald Thomas, MD; author of “The Lupus Encyclopedia.” Parts of this blog post come from “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers, edition 2

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While lupus itself doesn’t necessarily dictate a shortened lifespan, the complications and comorbidities associated with the disease can impact overall health. Given the heterogeneous nature of lupus, this impact is highly variable across individuals.

Factors Influencing Life Expectancy

Several factors contribute to the variability in life expectancy for those with lupus. The severity of organ involvement, the presence of complications, and the effectiveness of treatment all play crucial roles. Lupus is notorious for its heterogeneity, manifesting differently in each individual. Consequently, life expectancy can vary significantly. Most individuals with lupus lead long, fulfilling lives, while others may face more challenges.

“How long do I have to live?”

Times have changed a lot. Most people who have lupus today live long, average lifespans. Significant research on lupus includes great discoveries that make the reality of living a long life with SLE even brighter for more people. My (Don Thomas, MD) clinic now has many SLE patients in their 70s, 80s, and 90s. This was unheard of a couple of decades ago. I’ll never forget the “Thank You” card from one of my patients in 2020. She is one of many patients who religiously follow my “Lupus Secrets.” Part of her note said,

Dr. Thomas … none of my family ever lived past 60 years old… with your help, I plan on living as long of a healthy life with my lupus as possible.

What makes this card even more noteworthy? – She was 73 years old when she wrote this!

However, there are certainly people who have severe disease who die much too young. There will always be those who appear to have mild illness but unexpectedly have severe complications.

Prognosis

“Prognosis” is the medical term describing how a disorder affects a person and whether it may shorten their lifespan. This blog post discusses the topic in detail.

“Prognosis” comes from the Greek word for “to know beforehand” or “foresee.” Almost everyone diagnosed with an illness wants to know what the future holds.

“How will it affect my life? How long will I live?”

This blog post answers some of these questions. Since SLE affects every person differently and can affect any part of the body, predicting an individual’s prognosis can be difficult.

People with SLE should learn as much as possible about lupus, its potential complications, and how to avoid bad outcomes. SLE can appear overbearing. Therefore, this can be a powerful and vital message for those who live with it. People with SLE who arm themselves with knowledge are empowered with a degree of control over a disease that sometimes seems uncontrollable.

Lupus is seldom the sole cause of death in people who have lupus. Infections, blood clots, strokes, and heart attacks are common causes, just as in the general population. These events occur more commonly and at younger ages than the general population. People with SLE should realize this and learn how to prevent these complications, if possible, and manage them if they occur. This way, they would go a long way toward taking control of their lives and destiny.

Other factors are also associated with doing poorly from SLE. These include whether you take your medicines, age, income, sex, health insurance, and even where you live.

Issues Associated with Worse Problems from SLE

This table is not intended to include lupus lab tests or specific organ system problems.

Issues under your control:
Taking your medications as prescribed

Healthy choices: stop smoking and maintain a healthy weight through regular exercise and healthy eating

Care in a clinic devoted to lupus, by a lupus expert, or at a teaching center

See a rheumatologist you trust and communicate well with

Issues not under your control:
Non-Caucasian ethnicity, heritage, genetics
Male gender
Age at onset
          Children have more severe lupus inflammatory disease
          Older people have more severe organ damage due to aging organs
Poor insurance coverage
Geography (especially areas lacking rheumatologists and low-income regions)
Poverty (but income can potentially be under your control)

Education (but it can potentially be under your control)

Stress and racism

 

Which is Worse? Lupus or The Drugs?

Unfortunately, some people fear taking medicines because of potential side effects. In the patients I (Don Thomas, MD) have seen die from their systemic lupus, most were either those who refused to take their lupus drugs or did not have adequate insurance. The people who refused to take their medicines often wanted to take herbal supplements or “natural” remedies. They were also usually afraid of the potential side effects of the medications used to treat lupus. If people understand what SLE does if it is not treated appropriately, they could be more motivated to trust their doctors and accept the recommended therapies. Ensure honest conversations with your doctor on herbal supplements, dietary changes, and lupus medications.

Complementary (integrative medicine) therapies are becoming increasingly recognized as important. However, they should be used alongside standard lupus therapies instead of replacing them. Some examples of complementary therapies gaining increased medical evidence for possibly helping lupus include eating a healthy diet, exercising, getting at least seven or more hours of high-quality sleep daily, practicing daily mindfulness, learning to react better to stress (stress reduction techniques), and some supplements (like turmeric and ginger).

How did lupus patients do before treatments were available?

To realize the importance of treating SLE today, it helps to look back in history and understand what happened to people before treatments were available.

Before modern medicine, people with SLE suffered markedly poorer outcomes. How long patients with SLE lived can be divided into several periods.

Before antibiotics

The first period would be before the availability of any treatments, including antibiotics.

In 1935, Dr. P. Klemperer (creator of the term “connective tissue disease”) said that none of his SLE patients lived past 4 ½ years. Some doctors reported average life expectancies as low as 4 to 7 months after their diagnosis of SLE. Around half of the SLE patients died of severe infections during this time (emphasizing the importance of preventing infections, such as getting vaccines).

A 1941 study by Dr. Paul Klemperer showed that 45% of SLE patients died from infections. This was during a time when antibiotics, steroids, and other immunosuppressants to treat SLE were unavailable.

Be more fearful of infections than lupus treatments

This is important to realize. Some people with SLE are afraid to take their lupus drugs because they are afraid the medicine will cause an infection. However, the abnormal immune system of lupus also increases infections. This emphasizes the importance of controlling lupus inflammation using medications and treating any infection as soon as possible.

Antibiotics extend lupus patient lives

Many SLE patients lived longer after antibiotics became available in the mid to late 1930s. During this time, but before steroids and antimalarials, around 50% of patients survived two years. Approximately 20% made it to five years.

Earlier diagnosis of lupus

Another reason for such high death rates (besides the lack of treatments) is the difficulty in diagnosing SLE.

The first blood test to help diagnose lupus, the LE cell, was unavailable until 1948. Before the LE cell test, many people with SLE, probably the majority, were not diagnosed until their autopsy after they died.

The importance of diagnosing SLE earlier is a repetitive theme that continued over time. Each newly discovered lab test (such as ANA and, most recently, CB-CAPS) and development of SLE classification criteria (such as the 1982 and 1997 ACR criteria) were followed by earlier diagnoses, earlier treatment, and longer survival.

Along come the first true lupus therapies

1950s – 1960s

In the 1950s, the first useful treatments for SLE were antimalarials (initially quinacrine, then chloroquine) and steroids. After steroids and antimalarial drugs became available, people with SLE began living significantly longer. At least 50% lived five years or longer.

In the 1950s to 1960s, lupus nephritis was responsible for 70% of deaths in SLE. In the early 1960s, the next significant advancements were treating kidney disease with fluid pills (diuretics) and dialysis machines. Survival increased to more than 90% at two years.

Cyclophosphamide became available in the 1980s to treat nephritis (kidney inflammation) and other severe SLE problems. After cyclophosphamide availability, death from nephritis dropped considerably.

The 21st Century

After the new millennium, research studies continued to show that life expectancies improved.

2010

In 2010, the average life expectancy of SLE patients in Spain was 61 years old, compared to 42 years in 1981.

2019

A 2019 Canadian study showed that in the 1970s, their SLE patients had a death rate 13 times higher than the general population. In 2013, it dropped to 2 times higher.

2020s

Recent studies show that 98% of people with SLE (depending on the population studied) are still alive 10 years after their diagnosis.

One reason for longer lifespans in people with SLE today is doctors’ ability to diagnose lupus earlier during milder periods.

For example, people with mildly low blood counts can be found during routine checkups. The workup can show SLE as the cause. Fortunately, they can feel perfectly normal. Treatment at this early, mild stage of the disease can prevent progression to severe forms of SLE.

Unfortunately, 2-8% of people diagnosed with SLE are still dying within ten years of diagnosis. Most of these deaths are due to lupus (most commonly lupus nephritis), cardiovascular disease, infections, and cancer.

Unfortunately, since the 1960s, insurance companies have universally accepted no new laboratory tests to help diagnose lupus patients earlier. This has resulted in the average diagnosis of SLE taking 4-6 years. The system must change so that better diagnostic tests can become a reality to help lupus patients.

Life Expectancy for Today’s SLE Patients

The data showing that up to 98% of SLE patients live 10 years after their diagnosis and that most patients are living long, normal life spans (as long as they take their prescribed therapies) are from the times before the newer lupus drugs.

I hypothesize that with the coming of belimumab (Benlysta), anifrolumab (Saphnelo), and voclosporin (Lupkynis), life spans will become markedly longer. Dr. Anca Askanase and her fellow lupus experts showed that (along with hydroxychloroquine), belimumab (Benlysta), and anifrolumab (Saphnelo) are disease-modifying agents. This means they slow disease progression and reduce the risk of developing kidney, brain, lung, liver, and heart involvement.

Also, a Harvard study showed that belimumab (Benlsyta) is safer than oral immunosuppressants. Fewer lupus patients develop infections when taking Benlysta than when taking other drugs like methotrexate, mycophenolate, azathioprine, and prednisone. This is incredibly important because infections are among the top two killers of lupus patients. Anything that can be done to reduce infections is incredibly important. I highly suspect that Saphnelo will be shown to be just as safe.

My prediction:

The latest FDA-approved SLE drugs reduce organ damage (they are disease-modifying) and are safer (they cause fewer infections), so SLE patients are bound to do even better: live longer and have a higher quality of life.

My primary concern is that we have not solved the problem of health inequities. Too many people worldwide cannot access timely diagnoses and appropriate therapies. Also, the laboratory tests used to diagnose and manage lupus patients are outdated. All labs covered by commercial insurance companies in the USA (as of now, April 2024) are over 55 years old. We need to figure out ways to get better labs into the hands of patients and clinicians.

Understanding Lupus Complications

Organ involvement is a key determinant in assessing the potential impact on life expectancy. Lupus can affect various organs, including the kidneys, heart, lungs, and brain. Cardiovascular issues, such as accelerated atherosclerosis and increased risk of heart attacks, can contribute to health challenges in individuals with lupus, potentially influencing life expectancy. Lupus nephritis, a kidney manifestation of lupus, can pose significant health risks. Complications arising from renal involvement can impact overall health, requiring careful management. Fortunately, the FDA has approved new lupus nephritis therapies that greatly increase the chances of remission.

Embracing Life with Lupus

While navigating the complexities of lupus and its potential impacts on life expectancy, a holistic approach to health management is vital. This involves comprehensive medical care, lifestyle adjustments, and emotional well-being. With ongoing advancements in lupus research and treatment, individuals have more tools at their disposal to manage the disease effectively. Early diagnosis and targeted therapies contribute to improved outcomes. Building a robust support network and prioritizing mental well-being are integral to living with lupus. These factors contribute to the quality of life and resilience in the face of health challenges.

While the question of lupus life expectancy is complex and multifaceted, it’s essential to approach it with a nuanced perspective.

With advancements in medical care, proactive health management, and strong support systems:

Most individuals with lupus can expect to lead long, fulfilling lives. I hope everyone reading this will beat the odds, just like my patient who wrote me the “Thank You” card, who I mentioned at the beginning of this blog post. 

For more in-depth information on lupus life expectancy:

Read more in The Lupus Encyclopedia, edition 2

Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia

If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help. 


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