You know the importance of following your doctor’s guidelines about medication, exercise, and rest; reducing stress; and eating a healthy diet. But if you’re like many people with lupus, at one time or another you’ve come across a dietary or herbal supplement that really sounds as though it could help you. So, what do you do?
Connect the Dots: How to Foster Coordinated Health Care
By Gina Shaw
No matter what your health condition, it makes sense that your doctors talk to each other. It’s called “coordinated care”—the idea that all the health care providers involved in your care should share information promptly about your condition, treatments, and medical needs.
Over and over again, studies have shown that a coordinated team approach to care results in better health. And if you have lupus, which can affect any organ in your body, it’s even more essential that any specialists who might end up caring for you are all singing from the same songbook. So, while you may never need anyone but your rheumatologist, we talked to several specialists to find out how they could help.
Often, the rheumatologist acts as the team captain for the medical care of a person with lupus. “Lupus is not simple. You need to get specialists who understand this disease together, preferably someplace where they are physically close to each other, but at least connected by an electronic medical record,” says rheumatologist Susan Manzi, M.D., M.P.H., chair of the department of medicine at Allegheny General Hospital in Pittsburgh. Manzi co-founded the Lupus Center of Excellence at the University of Pittsburgh Schools of the Health Sciences and the University of Pittsburgh Medical Center.
“Ideally, a good lupus center will have someone who acts as a concierge or patient navigator, so when someone needs to see a skin doctor, kidney doctor, heart doctor, and lupus doctor, the navigator is helping them make all those appointments and coordinating them,” Manzi says.
Lupus frequently affects the kidneys; about one-third of people with lupus will eventually develop a kidney inflammation known as lupus nephritis, which, if left untreated, may lead to permanent kidney damage.
Lupus nephritis has few symptoms, so it’s important that nephrologists work closely with the rheumatologist or primary care doctor for a person with lupus. “We like to treat lupus nephritis aggressively and early to prevent chronic kidney damage,” says Brad Rovin, M.D., director of the division of nephrology at The Ohio State University College of Medicine in Columbus, OH. “When care isn’t coordinated, patients may be treated with antibiotics several times under the assumption it’s a urinary tract infection, until the signs just never go away and it turns out to be lupus nephritis.”
People with lupus may experience a variety of rashes, along with sensitivity to ultraviolet rays from sunlight and indoor artificial light, and other skin issues. “We have dermatology, rheumatology, and nephrology clinics all very close to each other, so we can easily schedule same-day appointments,” says Victoria Werth, M.D., professor of dermatology at the University of Pennsylvania School of Medicine in Philadelphia. “We also have a unified medical record, so if someone comes in one day to see me and the next week to see their rheumatologist, we’ll both know all about it. And we’re right next door to each other, so we frequently talk about the management of complex cases.”
The heart can be affected in lupus, but many cardiologists do not have specific expertise in lupus. That’s why it’s important for specialists to work together.
Samia Mora, M.D., assistant professor of cardiology at Harvard Medical School and a cardiologist at Brigham and Women’s Hospital, holds a clinic in the hospital’s Fish Center for Women’s Health in Boston. At the same time that she’s seeing patients, so are two rheumatologists who treat people with lupus.
“With chest pain sometimes it can be hard to tell when it is just inflammation, or something more serious such as unstable angina or acute coronary syndrome,” Mora says. “We’ve had a couple of situations where a person with lupus had chest pain and their rheumatologist or primary care doctor called me to ensure that they got evaluated on a faster basis. That can be very important, because if the heart muscle is in jeopardy, we have to act quickly.”
There are 19 syndromes and symptoms under the term “neuropsychiatric lupus,” according to Eyal Muscal, M.D., M.S., an assistant professor of pediatrics in the sections of rheumatology and neurology and developmental neuroscience at Baylor College of Medicine in Houston.
“Some of these manifestations, while less prevalent, may be serious and life-
threatening, such as strokes or seizures. There are also things on the list that are much more common, like mood disorders, anxiety disorders, and cognitive problems,” Muscal says. “It can be hard to tease out whether symptoms are due to brain inflammation, blood flow or blood vessel abnormalities due to lupus, the effects of medication, or just the effects of having a chronic illness. You really need a coordinated, system-based approach to figure these things out.”
Be Your Own Advocate
How can you ensure you get coordinated care?
Be super organized, says Eyal Muscal, M.D., M.S. “In your wallet, briefcase, or purse, keep an updated list of all medications that you’re on, including the dosages and who prescribed them, along with contact information for all the specialists taking care of you. That’s especially important if you end up in the emergency room with physicians who are not familiar with your care.”
Don’t be shy, adds Susan Manzi, M.D., M.P.H. “Ask your doctors how they communicate with the other specialists treating their patients with lupus. Do they send each other notes regularly? When you come to see your rheumatologist next, will he know what happened at your visit with the nephrologist, and will he talk with you about what that doctor wants to do? You have to set the expectation up front.”
After more than a half-century of drought, many new treatments are in development for lupus. However, approval of a new treatment does not ensure that all people with lupus will be able to try it.