Aging With Lupus

Lupus is a chronic autoimmune condition where the immune system reacts against itself and attacks the body's healthy cells, tissues and organs, causing inflammation and damage. It can affect the joints, blood cells, kidneys, skin, brain, lungs or heart.

"People with lupus can experience significant symptoms such as painful joints, extreme fatigue, hair loss, skin rashes, cognitive issues and physical impairments that affect every facet of their lives," said Karen Costenbader, MD, a rheumatologist and professor of medicine at Harvard Medical School and Lupus Program Director at Brigham and Women's Hospital in Boston. Cardiovascular issues and stroke can also be part of lupus.

For Carolyn Lawhorn, 66, of Chattanooga, Tennessee, her path to her lupus diagnosis led her to visit several primary care physicians over two years, starting at age 42, complaining of fatigue, swelling, and joint pain. "I ended up in the ER after getting to the point of being too weak to walk and was admitted and diagnosed by a rheumatologist," she said.

Lupus is hard to diagnose, and no test gives a simple yes or no answer. "Making a lupus diagnosis can be like putting together a puzzle," Costenbader explained.

There are four types of lupus; 70% of individuals have Systemic Lupus Erythematosus (SLE), which affects multiple organs. Other kinds include Cutaneous Lupus Erythematosus (limited to the skin); Drug-Induced Lupus (mostly reversible); and Neonatal Lupus, which usually resolves itself in six months.

The Lupus Foundation of America reports that women comprise 90% of the 1.5 million Americans with lupus. The condition usually affects women from 15 to 44. Those who identify as African American, Hispanic or Latino, or Asian Americans are three to four times more likely to get the condition than white individuals.

It is unknown why lupus is more common in women than men. "Doctors think that differences in our genes and hormones – chemical messengers that deliver messages from the brain to the body – may play a role," Costenbader said.

Moreover, sometimes, people with lupus have other autoimmune diseases. The Lupus Foundation of America reports that one in three individuals with lupus have another autoimmune disease. Christine Stearns-Houde, 57, of Freeport, Florida, has inflammatory bowel disease, colitis, scleroderma, arthritis, thyroid fibromyalgia, Sjogren's Syndrome and lupus.

Costenbader reports there may be an increased risk of developing lupus if a family member has it, but in most cases, the patient doesn't have a relative with lupus. That said, lupus runs in some families, and relatives of people with lupus may have other autoimmune diseases. "An underlying genetic predisposition to autoimmune diseases is likely shared in some families," Costenbader added.

Stearns-Houde was diagnosed at 51 but reported signs of lupus "long before that." At 50, she had a stroke and was referred to a neurologist, who recommended she see a rheumatologist, cardiologist, pulmonologist and gastroenterologist.

According to Christie Bartels, MD, Associate Professor of Medicine at the University of Wisconsin School of Medicine and Public Health (and a member of the Medical and Scientific Advisory Board at the Lupus Foundation of America), unlike usual onset lupus which affects 9 women to 1 man, late-onset shifts to 5 women to 1 man, making it a bit more common in men.

Bartels said Hydroxychloroquine (an immunosuppressive drug) is the primary medicine for treatment because it reduces damage and prolongs life. Other medications include methotrexate for arthritis, mycophenolate for skin or early kidney disease, and several others.

According to Bartels, "In severe kidney or neurological or life or organ threatening disease, cyclophosphamide, a strong IV medication is used." She also noted there are three newly FDA-approved lupus medications: belimumab for skin and joint disease; anifrolumab, in addition to standard therapy in cases of moderate or severe lupus; and voclosporin, used as add-on treatment in kidney lupus.

Because lupus affects many systems of the body, a team approach to treatment is essential to support whole-person care. "Lupus is different for each person," Costenbader said, "so it's important to work closely with a health care team to develop a personalized treatment plan."

Sebrina Smith-Henry, 55, of Fernandina Beach, Florida, goes to a primary care physician for overall needs and sees a rheumatologist, oncologist, hematologist, cardiologist, pain management doctor and physical therapist. "I am covered from head to toe with care from doctors," she said.

While basic treatment for lupus is similar regardless of age, Bartels' research has found that "patients with lupus over 50 appear to have higher risk for lung disease in addition to early vascular disease risk." She recommends lung function tests in addition to heart and vascular disease screening.

Further, "lupus can cause premature aging including accelerated heart disease and stroke decades before peers," Bartels said. "So, it's important to stay on hydroxychloroquine which is protective, reduce steroids as directed and control blood pressure."

"The hardest thing about living with lupus is the unpredictability of it all," Smith-Henry said. "One day I can be feeling fine and the next, I am not."

"I often feel like I have the flu where I feel exhausted, weak and in pain," Stearns-Houde said. "I try to keep a positive outlook and enjoy the good days."

In addition to a supportive family, Smith-Henry has friends with lupus. "My support system includes my church family, plus I am a Lupus Foundation of America Ambassador and Advocate. I am also part of several support groups on social media."

While there's no cure, there are treatment options to manage symptoms and improve quality of life, Costenbader noted. "With proper management and care, many are able to lead active and fulfilling lives, though some may have more severe cases that have a great impact on quality of life."

As advised by Smith-Henry, Stearns-Houde, Lawhorn, Costenbader and Bartels, here is some overall guidance for living with lupus:

• Get up each day and be glad that you did
• No matter how you're feeling, try to move each day
• Avoid stress
• Get adequate rest and sleep
• Listen to your body
• Be the captain of your health care team, form partnerships, ask questions, and share decision-making
• Invest in and build a strong social support network
• Eat healthfully and exercise regularly
• Take your medicine
• Keep track of your symptoms and drug side effects
• Speak up and be your best advocate with the doctors