Life and death with an autoimmune disease
There are now more than 100 autoimmune diseases, in which the immune system that would normally help a person fight off disease instead mistakenly attacks healthy tissue and does damage to the body.
According to the National Institutes of Health, up to 23.5 million Americans suffer from an autoimmune disease, and the incidence of many of the conditions is rising for reasons that aren't entirely clear. And the list of potentially fatal autoimmune diseases, or those that can shorten life span, is long. These conditions include everything from rheumatoid arthritis, which causes pain and swelling in the joints and raises the risk for life-threatening cardiovascular disease, to lupus, a chronic disease that can cause inflammation in any part of the body.
"Almost all autoimmune diseases decrease life expectancy," says Dr. Betty Diamond, director of the Institute of Molecular Medicine at the Feinstein Institutes for Medical Research at Northwell Health in Manhasset, New York. One notable exception is hypothyroidism, or underactive thyroid, she says.
Treatment advancements mean many with autoimmune diseases now live longer.
While disease severity varies, improvements in treatment have greatly bolstered life expectancy and improved quality of life for many with autoimmune conditions. Therapeutic advances include biologic drugs that suppress the immune system activity -- or overactivity -- that cause myriad health problems for those with autoimmune diseases such as lupus and multiple sclerosis.
Frequently, as with other disease prevention and management, a combination of lifestyle improvements -- like eating well, exercising regularly and getting adequate sleep -- and medical management are recommended. "The most important thing is to find a physician who's knowledgeable and experienced and with whom you work well, and together work out a treatment regimen that works for you," Diamond says.
Autoimmune diseases may impact mortality in a couple ways: First, more common autoimmune diseases like rheumatoid arthritis and Type 1 diabetes can have an impact on the lives of a greater number of people. And second, "There are autoimmune diseases that have a very high rate of mortality but are very rare," says Dr. Virginia Pascual, director of the Gale and Ira Drukier Institute for Children's Health at Weill Cornell Medicine in New York City. One example of that, she notes, is autoimmune myocarditis, a rare autoimmune disease characterized by inflammation of the heart muscle.
Myocarditis is often diagnosed in people their 20s to 40s, and symptoms like abnormal heart beat, chest pain, shortness of breath, fatigue and fever can come on suddenly and without warning. The condition is underdiagnosed and may cause sudden death.
So with possible heart attack symptoms, it's important to seek medical attention immediately for possible symptoms of the disease. When it is diagnosed, drugs that suppress the immune system may be used to treat autoimmune myocardititis.
Nearly 1 million people in the U.S. are living with multiple sclerosis, according to the National Multiple Sclerosis Society. This autoimmune disorder affecting the brain and spinal cord results from the immune system attacking a protective layer around the nerves called the myelin sheath, which can cause a range of problems. These include difficulty with coordination and balance to thinking and memory issues.
Treatment improvements continue to inch life expectancy for those with MS closer to what's typical for people without the neurologic disorder. However, research published in the journal Neurology suggests people with MS live seven years less, on average; those with MS had a median age of survival of about age 76 compared to 83 for a matched general population, according to the 2015 study.
Among other treatment options, drugs therapies targeting B cells -- a type of white blood cells, cells used by body's immune system -- have shown promise. "B cell depletion therapy has been phenomenal for many patients with multiple sclerosis, and is now standard of care, which it certainly wasn't some years ago," Diamond says.
In addition to treating the autoimmune disorders, clinicians have to be mindful of treating other health problems caused by or related to the autoimmune disorders. For example, the most common type of lupus, systemic lupus erythematosus, causes widespread inflammation and impacts organs like the kidneys (a form called lupus nephritis). So improved treatment of kidney disease, including the availability of kidneys for transplant, has helped improve the outlook for many with lupus.
Therapies that suppress the immune system also put patients at a higher risk of infection, a cause of death in some patients with lupus. So improved treatment of infections -- including, as Diamond notes, having better antibiotics for some of infectious complications of treating lupus -- has also positively impacted survival rates for people with lupus.
As with other autoimmune conditions, various factors impact life expectancy for people with lupus, including, for reasons not fully understood, ethnicity. "Lupus mortality is increased in this country in African-Americans, in Hispanic populations, in Asians and is decreased in Caucasians," Pascual says.
Type 1 diabetes
Commonly diagnosed in kids, Type 1 diabetes is an autoimmune disease in which the immune system attacks the pancreas so that it can't make the insulin needed to properly control blood sugar.
Those with diabetes that's well-controlled can live long, full lives and have good quality of life. However, particularly if it isn't well-managed, Type 1 and other forms of diabetes (which aren't autoimmune diseases) can cause a variety of serious complications. Those can include kidney and heart disease, eye disease, or diabetic retinopathy, and nerve problems.
Type 1 diabetes is managed with insulin -- to keep blood sugar within a healthy range -- rather than suppressing the immune system. Exemplifying the impact of lifestyle, proper management of Type 1 diabetes means also carefully considering diet, as well as exercising regularly. That includes controlling carbohydrate consumption and evenly spreading carbs across the day with meals and snacks.
Vasculitis -- inflammation of the blood vessels, which is often caused by autoimmune disorders -- also decreases life expectancy, notes Dr. Ignacio Sanz, chief of the division of rheumatology at Emory University School of Medicine, and director of the Lowance Center for Human Immunology at Emory University and Children's Healthcare of Atlanta.
Treatment involves using medications like corticosteroids to control inflammation as well as addressing any underlying disease. Biologic therapies may be used to deal with immune system issues that contribute to the condition.
To prevent infections that can occur when immunosuppressive treatments are used for any autoimmune disorder, patients are encouraged to stay up to date on vaccinations. That includes getting vaccinated to prevent the flu, shingles and pneumonia, as recommended by a doctor. Vaccination should be part of the standard of care with autoimmune diseases, Sanz says.
The joint disease -- which affects up to 1% of the population, predominantly women -- can raise the risk for heart disease and lung disease. Based on research to date, having RA may decrease life expectancy by a decade or more.
RA is one of a number of autoimmune disorders called rheumatic diseases, or musculoskeletal conditions marked by inflammation. Most rheumatic diseases have a decreased life expectancy and increased mortality, Sanz says. "That is very well-documented for rheumatoid arthritis, it's well-documented for lupus (and) it's clear for vasculitis."
However, as with other autoimmune diseases, life span varies greatly with RA by the individual, and proper management of the disease can improve a person's outlook. Treatment often includes the use of immunosuppressive anti-rheumatic drugs (DMARDs) and self-care for arthritis symptoms such as using a heating pad and pain relievers to ease joint discomfort.
Just as rheumatoid arthritis can impact health well beyond inflaming joints, psoriasis is more than a skin disease. The autoimmune disorder is also associated with other serious issues, including an increased risk of diabetes, depression and heart disease.
As a result, depending on the severity of psoriasis, it may affect life expectancy and raise mortality risk. For that reason, experts say, patients and their doctors should discuss not only topical treatment to address scaly patches of skin, but if and when immunosuppressive therapy might be warranted.
Some autoimmune conditions that may affect life expectancy:
-- Autoimmune myocarditis.
-- Multiple sclerosis.
-- Type 1 diabetes.
-- Rheumatoid arthrtis.
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