When Mary and Albert Luciano found out in 2008 that their daughter Erin had lupus, they were determined to learn everything they could about the illness.
Understanding Your Child’s Eye & Heart Health
Being the health care advocate for a child with lupus is a full-time job, and follow-up and preventive care, especially for the eyes and heart, are critically important: The inflammation caused by lupus poses silent and delayed risks, while medication side effects from corticosteroids and the antimalarial Plaquenil® can cause problems many years later if not carefully monitored from the start.
Keep It Visual. “It’s very important for parents to be proactive about paying attention to their children’s eye health,” says Kelly L. Larkin, M.D., a Houston, TX, ophthalmologist who has a background in ocular immunology. “Children may not always tell parents if they have itching, redness, pain, or blurred vision.”
Lupus most commonly affects the eyes by causing keratoconjunctivitis (dry eyes). Symptoms of itching, burning, and blurry vision are usually treatable with nonmedicated eye drops, says Larkin.
Episcleritis (inflammation in the tissue over the white wall of the eye) and scleritis (inflammation of the white wall itself) are less frequent but more serious. “Individuals with episcleritis most commonly experience red eyes, mild eye pain, or irritation,” says Larkin, and are treated with prescription eye drops, if necessary. Scleritis is more serious and can cause severe pain. Luckily, “many of the anti-inflammatory medications used to treat lupus are helpful in treating scleritis, so the ophthalmologist and rheumatologist usually coordinate therapy.”
Of greatest concern are lupus retinopathy and retinal vasculopathy, which can cause significant visual loss if not caught and treated early, says Larkin. These rarely have visible symptoms, so a baseline dilated eye exam and regular follow-up are important for indicating systemic disease activity in appropriate cases, says Larkin.
Have a Healthy Heart. Lupus inflammation threatens heart health, too, says pediatric rheumatologist Stacy P. Ardoin, M.D., M.H.S., assistant professor of clinical medicine at The Ohio State University and a member of the Lupus Foundation of America’s Medical-Scientific Advisory Council. “It’s easy to get caught up with taking care of your child at the moment,” she says, “but we need to promote long-term heart health.”
Inflammation of the heart muscle (myocarditis), of the lining of the heart (pericarditis), and of the blood vessels (vasculitis) can be caused by active lupus and can happen to children as well as adults. Symptoms include chest pain, shortness of breath, and a dramatic drop in energy levels, resulting from low levels of certain blood components.
Lupus also increases the risk of atherosclerosis, or thickening of the wall of the artery, in children. “The garden-variety version of this disease is one that older people get,” says Ardoin, “but it starts much earlier in people with lupus, and can lead to heart attack and stroke as early as one’s 30s.” Studies suggest chronic inflammation is to blame.
Children with lupus develop atherosclerosis at a much faster rate than other kids. Plus, atherosclerosis develops without symptoms until the disease is very advanced, so “start taking care of these issues early—when a child with lupus is, say, 11, as opposed to waiting until they’re 50,” Ardoin says. She counsels parents to keep track of children’s blood pressure and cholesterol, and to encourage regular exercise. (The Centers for Disease Control and Prevention recommends one hour of physical activity per day.) It’s particularly important to avoid smoking, Ardoin adds.
Prescriptions and Prevention. Medications are important for managing lupus, but they do have potential side effects for eye and heart health. Corticosteroids can cause weight gain and increase blood pressure if not carefully monitored, both of which affect heart function. They rarely have ocular side effects, though long-term use can cause cataract formation.
Plaquenil, commonly prescribed for lupus, can occasionally cause hydroxychloroquine-induced retinal toxicity, or “Plaquenil retinopathy,” which can damage central vision, says Larkin. “We recommend that all children have a baseline dilated eye exam plus diagnostic testing to assess retinal health before they begin taking Plaquenil, followed by an eye exam every one to three years.”
Many ophthalmologists want to see people yearly when they are taking Plaquenil, which, as Larkin points out, “gets patients in the habit of follow-up.” It’s a habit that can mean big health benefits in the future, as damage to vision can be minimized or avoided if signs of drug toxicity are detected early, she adds.
For individuals with lupus, bone health may be a concern as medications can lead to bone loss. However, low bone mass density is often treatable.