Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD’s chief physician editor for health and lifestyle medicine. In today's episode, we're taking a step-by-step approach to lupus, a chronic and confusing autoimmune disease. The Lupus Foundation of America estimates that 1.5 million Americans, and at least 5 million people across the globe, have lupus. Ninety percent of people living with lupus are women. However, men, children, and teenagers develop lupus too.

We're going to separate fact from fiction, address common myths—like whether it's contagious, caused by stress, or just a rash. And we'll also talk about environmental triggers, early symptoms to watch for, and what to expect from your healthcare team. Living with lupus can mean living with uncertainty, but understanding what's happening inside the body can make all the difference.

We'll explore what life with lupus looks like, from navigating long-term health issues to questions about pregnancy and family planning. We'll also explore how caregivers and loved ones can provide real, meaningful support, as well as the crucial topics to raise with your healthcare provider at your next visit.

Whether you're newly diagnosed, supporting someone you love, or just trying to understand this condition better, this conversation is designed to help you feel informed, empowered, and never alone on your journey. First, let me introduce my guest, Dr Karen Costenbader.

Dr Costenbader is the director of the Lupus Program at Brigham and Women's Hospital in Boston and a professor of medicine at Harvard Medical School. Welcome to the WebMD Health Discovered Podcast. I am so happy to have you on today to talk about a topic that I think a lot of people have questions about. But before we begin exploring our topic today, I'd love to ask about your own personal health discovery. In working with patients diagnosed with lupus, what do you find that they're asking you and bringing up commonly in private discussions with you?

Karen H. Costenbader, MD, MPH: That's a good question, and I think the questions that I hear the most from my patients are questions that I've had forever in studying lupus, and I think they motivate my work. Many people ask about what causes lupus, what can I do to make it better, is it inherited, are my children at risk? And then what can I do about it? Or is there a special diet I should be on? Those kinds of questions I hear all the time. People are especially interested in lifestyle changes and food, and so it's motivated me to do research in that direction as well.

Pathak: Really interesting. So I'd love to answer some of those questions in our discussion today. Before we start, I'd love to help our audience understand what lupus actually is. Can you define it for our audience?

Costenbader: So lupus is an autoimmune disease, so that means that the body mounts an immune attack against itself. Normally, the immune system is there to ward off invaders—viruses, bacteria, you know, infections and external things—but not to attack itself. So autoimmunity is really at the central part of lupus definition, but it's also chronic, meaning once it starts, it goes on forever. It's a chronic disease. It's not going to be there for a couple years and then go away.

Usually, when I introduce the idea of lupus, I say this is a chronic disease and we'll manage it together, but you're going to have it for probably the rest of your life. But it comes in periods where it's very active, where we call flares, and periods where it's not so active. So although it's chronic, the goal is to keep it in remission or low disease activity as much as possible. But it does rear its ugly head sometimes, and you have more active disease—periods called flares.

And then lupus is a very complex disease that can affect any organ system. So unlike other autoimmune diseases, like rheumatoid arthritis, which really affect the joints and cause arthritis, lupus can cause joint disease, but it can cause inflammation in many different organ systems. So no two patients are alike, and inflammation in many different body systems is possible over time with lupus. So I think those three things.

Pathak: And can you tell us a little bit about what we know around who's most potentially impacted by lupus? Are there certain groups at higher risk for developing lupus?

Costenbader: Sure. At the population level, it's definitely women—much more females than males. So people who were born female have a much higher risk. Overall, about 90% of cases—nine out of ten people with lupus—will be female. That ratio is lower, so it's more equally split among boys and girls until about the age of the first period, around 10 to 12, and then it really becomes mostly females. And then after menopause, it also drops down a little bit. It's not so heavily female predominant.

That being said, anyone can get lupus, and at any age. It happens even in very, very young children, and it happens in older people. So we always have to keep ourselves aware that it can happen. It's just most likely to happen in women from ages, you know, 15 to 40.

And then there are other groups of racial and ethnic backgrounds that have more predominant lupus in the population. Those are people with African ancestry, Asian ancestry, Hispanic ancestry, and Native American ancestry more than people with European ancestry. And that's true probably worldwide, and it's definitely true in the United States.

Pathak: You know, you mentioned that lupus can really impact any part of the body, and as a primary care doctor, I know that often, because there are so many nonspecific types of symptoms that might be happening, and sometimes there may be no symptoms at all. Can you give a step-by-step process of how people are generally diagnosed? How do they generally come to medical attention? What should they be thinking about if they're concerned that they might have lupus?

Costenbader: Yeah. As I said, no two patients are alike. Some patients present kind of right off the bat with many different organ systems involved—high fevers and joint pains and rashes and maybe inflammation around the heart or brain involvement or kidney involvement—or everything's just all at once, you know, out of the gates, just very, very active. And even those people, we have to be vigilant and make sure we're not missing infections or malignancies and other things, because it can look like a lot of other things when it presents. And then there are laboratory tests we do to confirm that it is lupus and not other things.

And then there are other people that present more slowly with probably less fulminant symptoms—so more like not feeling well and fatigue and joint pains and maybe some rashes or maybe some strange blood counts. It takes a lot longer to put your finger on what's going on. Probably those people will have a milder course of lupus, but in the meantime, they're not feeling well for a while before they get the diagnosis.

And then again, there are lab tests that we can do. There is no one specific lupus test, though I have people come to me all the time and say, “I'm here because I had the lupus test and it was positive.” But there is no lupus test, unfortunately. It's kind of a whole battery of tests. You'll hear about the antinuclear antibody, and the antinuclear antibody is positive in almost everyone who has lupus, so that's helpful. But it's also positive in about 20% of young women, so it's not very specific. And just because you have an antinuclear antibody by all means does not mean you have lupus. So there are many other autoantibodies and other lab tests that we'll do as well, as well as a very complete review of all the systems in the body to see what else could possibly be going on.

Pathak: And you know, you've already mentioned that there are sort of shifts in diagnosis around the time of puberty and menopause. If we're talking about women, I'd love to dig in a little bit there and really think about a lifespan perspective in terms of are there other times in one's life that might see more or less lupus—for example, pregnancy.

Costenbader: Yeah, pregnancy is a difficult one. So yeah, in terms of lifespan, as I said, you can have lupus at any time in your life, so we do see it presenting at any time. But then it really has this uptick between the age of the first period and menopause. So we think that some of it may be driven by female hormones, but the female predominance itself may have more to do with genetics.

There are factors on the X chromosome. One of them is called XIST, and it's very interesting. That does predispose people who have two X chromosomes—so females at birth—to have a predisposition to autoimmunity and probably lupus in there. And then other life events—pregnancy is a difficult one, because females of childbearing age, that's the time you get pregnant too. So the association with pregnancy and lupus has been difficult to tease apart. Is it the pregnancy, or is it just the time of life that people will come down with lupus?

It does make treating lupus much more difficult. We see lupus present before pregnancy, early in pregnancy, during pregnancy, and then after pregnancy. Managing onset lupus or very active lupus during pregnancy can be a challenge, and we often do come up against that challenge because of the people who get lupus.

Pathak: So let's talk a little bit more about what the science tells us about what might predispose someone to developing lupus. So you mentioned a genetic component. Can you talk to us about that versus environmental exposures, potentially infectious exposures? What's the latest in the science?

Costenbader: So, yeah, thanks for the question, because that is what I study, and I have been studying for a long time. And I think I’m motivated by my patients who are asking these questions all the time. So we do know that people will have—you probably have—a genetic predisposition that you get from your parents, and you may be at risk. There are over a hundred—there are probably 130 or more—genes that are associated now with risk of developing lupus, but all in a little way. They interact with each other, and they interact with the environment, and then many different exposures that you might have during your life.

And we’ve studied a lot of these, but these start even in utero, with what your mother may be exposed to. And then during your lifetime, there are many different windows of your life where you may be exposed. We’ve studied many of these. Cigarette smoking and air pollution increase the risk. Obesity increases the risk a little. Stressful events, post-traumatic stress disorder, and very stressful events—anxiety and depression—can increase the risk a little bit. Ultra-processed food, lack of exercise. So there are many things, and no one thing would probably push one person over.

And it may be the way that these all kind of combine at different age windows over your life, creating a more inflammatory atmosphere in your body that, if you are predisposed already to get an autoimmune disease, then it may tip you over. Some things may be bigger triggers than others. If you get an overwhelming infection or have a very, very stressful event in your life, maybe then, if you were predisposed to develop lupus or another autoimmune disease, maybe you would be tipped over at that point.

So that’s what I’ve been studying, and I think we’ve been trying to identify as many kind of modifiable factors as we can. Female hormones may be in there, especially the older oral contraceptives that had very high doses of estrogen were implicated. And then there are questions about postmenopausal hormones at the time of menopause as well, especially the ones with high doses of estrogen.

Some medications are implicated in kind of drug-induced lupus. It’s very complicated, but very interesting how these factors may combine with your underlying genetic predisposition to develop lupus, too. And some people develop lupus and others don’t. Yeah.

Pathak:

Costenbader:

Pathak: And can you talk to us a little bit about the research around Epstein-Barr virus? That was in the news, so I’m just really curious around this very common virus and its links to lupus.

Costenbader: So Epstein-Barr virus is the virus that most of us get. Most of us get mono. Children get it, and it can be asymptomatic, and it’s really a complicated virus. So, I guess to back up, many viruses have been implicated in autoimmune diseases, and many different mechanisms. Do they have proteins that cause molecular mimicry, and then the body mistakenly attacks these proteins and self-proteins? There are many other mechanisms that have been invoked. They rev up the systemic inflammation in general.

So EBV, or Epstein-Barr virus, is on the list of viruses we’ve been very interested in for a very long time, and many different mechanisms have been thought about. And in the new work, it was very interesting—studies that are very complicated—but it seems that EBV, when we’re exposed to it, we never clear it. It becomes dormant in our body and integrated in a latent phase inside, especially our B cells. And B cells are really important cells for producing antibodies.

So the way that it integrates into the genome and the way that it changes antigen presentation—the way that proteins are then shown by the immune system to other parts of the immune system to attack—changes over time. So these are very elegant experiments showing that maybe misintegration of EBV into the genome, especially of B cells, over time changes the way the immune system then recognizes itself and the development of autoimmunity. So, interesting. Not that many of us can avoid EBV, because it’s—95% of us.

Pathak: And then I’d like to touch on something you mentioned as really a critical question that so many of your patients ask you around lifestyle factors and nutrition. What do we know around whether or not any lifestyle factors impact the development? And then what do we know about whether or not any lifestyle factors impact the sort of frequency of flares, if you already have lupus?

Costenbader: Good questions. So we’ve done a lot of work concerning potentially modifiable risk factors for the development of lupus. So some things that are modifiable, that you can stop doing, that are associated with increased risk include cigarette smoking, obesity, ultra-processed food—really junk food, you know, being in the highest proportion of people who eat the most junk food—was associated, you know, with a very inflammatory diet. And oral contraceptives have been associated in our work, and stressful exposures—PTSD, depression—although these are not always avoidable.

But they do give us insight into how the disease may develop and the ways in which the brain is connected to the immune system. It’s complicated and very fascinating. Air pollution is another exposure. Asbestos and crystalline silica.

So there are a bunch of them that have been identified, and all of these increase the risk of developing lupus and many other autoimmune diseases as well, so they may not be specific. Some of them are more avoidable than others, and I think they do add up.

In the Nurses’ Health Study cohort, which is a very large cohort of women followed over time, we’ve made risk prediction models using their baseline genetics, their family history of lupus or rheumatoid arthritis that they’ve reported, and then many other factors that women reported to have done or had—lifestyle behaviors—from smoking and drinking and things like that over time, many years before they may have developed lupus or not.

And they do add up, and we can see that we can correctly classify people based on their lifestyle behaviors. Trials yet to say, well, if you correct all these behaviors, do you bring down the risk of developing lupus—which I would really like to see. It would have to be a very, very large trial for a long time.

But we have made models where we put the women into different buckets depending on their healthy lifestyles. So compared to the people who have all the bad lifestyle, the more healthy lifestyle you have—if you don’t smoke, you are not overweight, you have a healthy diet, you exercise—the risk continues to come down. And a large proportion of the risk of lupus in the population, in this population, can be attributed to those five healthy lifestyle things. So that’s a good message and a message that I always try to pass on to my patients.

And then when I’m following someone with lupus, which we do in clinic, and they do have flares, we try to figure out, well, was there anything that led to this flare, because we’d like to avoid it in the future. Sometimes it is a very stressful event. Sometimes it’s work and no sleep, or I had a virus, or I didn’t take my medications. You know, there’s a lot of things going on. Sometimes we can’t figure it out, but it’s nice to try to think about what are the triggers of flares so that you can try to avoid those and keep life—and your lupus—very quiescent.

Pathak: So when we think about lupus, I think a lot of us are familiar with skin rashes, particularly facial skin rashes. We are familiar with kidney complications that can happen from lupus. You mentioned heart complications, neurologic complications. So tell us a little bit about long-term follow-up. What are we looking at in these patients to manage and to make sure that the condition is quiescent, or as quiescent as possible?

Costenbader: So again, lupus is not the same disease in any two people. Some people will have very mild disease. We use antimalarial medications like hydroxychloroquine in most everyone, and those are disease-stabilizing. And people with mild disease may just have some photosensitive rashes—when they go in the sun, they get rashes.

So we use a lot of ultraviolet protection, sunscreen, and some hydroxychloroquine. They stay out of the sun. You know, maybe they had joint pains and rashes, and then they’ll be stable. And that’s some proportion of patients.

But really, there’s another large group of patients who can have organ involvement in many different kinds of organ systems, and working very closely with many providers, including rheumatologists, maybe dermatologists, nephrologists—the kidney doctors—and heart doctors. So some people have really kind of fleets of different doctors that are working together to take care of their lupus.

And it involves much more than just hydroxychloroquine and other immunosuppressive medications—glucocorticoid steroids, which we try to really avoid as much as possible now, but they do work fast, and often we use them for short periods of time before we get people on more immunosuppressive medications, including biologics, which might be injections or infusions, and just seeing the doctor very, very often.

I think one of the biggest messages that I give to my patients when I know that they’re going to have really kind of more active lupus or more severe lupus is, I want to see you quite a lot. We need to stay in constant communication. If you’re having a problem with a medication, please let me know. If you’re having any new symptoms, please let me know. Let your other doctors know. Communication is the best, because it could be a problem with a medication, it could be a new symptom of lupus.

We don’t want it to get out of control before we try to put it back in the box. So the best way, I think, to stay in remission or low disease activity is really to see each other very, very frequently, to talk about all kinds of symptoms, how we’re managing them, are the medications right, to make sure we get the screening labs, make sure we’re on the same page with goals for pregnancy, goals for travel, goals for doing other things, getting back to work, so that we know each other very well. And lines of communication are.

Pathak: What is your advice to caregivers or loved ones for the best ways to support someone living with lupus?

Costenbader: It’s great that loved ones do accompany patients to the office, and then they hear the message as well, and that can be really helpful. They can ask questions, and there are also two sets of ears that hear, you know, what the medication side effects are, what the plan is.
So that’s very helpful. I think understanding that lupus is a chronic disease, that there are periods where it’s very active flares and there are periods where it’s more inactive, and that although the loved one, the person living with lupus, might look perfectly fine, they still could be suffering.
Sometimes people living with lupus say, “People don’t understand. They think that I’m fine because I look fine. I don’t have a rash right now, but I feel horrible. I have, you know, joint pain. I have fatigue. There’s problem concentrating,” et cetera. So understanding all of that and being very patient, understanding that it’s a chronic disease that is going to go on for life, that patients and their loved ones are immunosuppressed in many instances.
So vaccines are really important to prevent disease, and not only for the patient and the person with lupus, but for the family members and everybody living in the household to get their vaccines and do what they can to prevent infection from entering the house. So there are a lot of things, and just being supportive.

Pathak: I’d love for you to do a little myth busting. Can you give us some of the biggest myths that you hear that you really just want patients and caregivers to recognize as myths, and to give them a little bit more of the accurate health information that they should have?

Costenbader: Yeah, there are a lot out there about lupus because it’s really not very well understood. So first of all, it’s not contagious. I mean, it may run in families—there’s a super strong genetic component—but often, you know, the genetic component is very small and the risk is still a 5% lifetime risk.
And so it’s not contagious. It’s not going to affect everyone in the family. There’s nothing you can do to give yourself lupus. And that being said, there’s a lot of misinformation out there about vaccines, that vaccines can cause lupus or other autoimmune diseases. We really highly recommend vaccines of all kinds, especially for our patients with lupus who are immunosuppressed.
We have to give them the, you know, non-active vaccines. We make sure that they get them before they get there. We really try to get them before they get immunosuppressive medications so that they can have full protective effect.
And there isn’t any good evidence that vaccines will cause lupus. Vaccines have been associated with, you know, some slight increase in other autoimmune diseases like Guillain-Barré, but not lupus. So that’s really just very important. And vaccines don’t cause lupus flares in a large sense, and not severe flares.
So the preponderance of the evidence really is in support of vaccines. I also unfortunately see people—even though I’m trying to explain it’s a chronic disease and you need to take the medications for life—that the medications start to work and they say, “I don’t need them anymore. I feel fine.”
And that is actually likely because you’re taking the medications, and you do need to continue to take the medications because it is, you know, getting you back to low disease activity states and remission and feeling good. But the medications you take every day are working.
So it’s hard to remember all those medications, but especially for medications like hydroxychloroquine and antimalarials, it’s an everyday medication. It works long term. It’s disease stabilizing, and people will think, “Oh, I don’t need it anymore because I’m feeling fine.” So that’s a myth that needs to be busted.
And then I think last, people are very interested in, you know, foods and what they can eat or drink, and there’s a lot on the web about inflammatory diets. I think a healthy diet, to remove the junk food, the ultra-processed food, French fries and donuts and, you name it—we know what junk food is—definitely corn syrup and Coca-Cola and all the sugary beverages are definitely associated with increased systemic inflammation. Those probably do contribute.
But removing eggplant and tomatoes, there’s no scientific basis for that. So probably a healthy Mediterranean-style diet is good, but a very restrictive diet of any kind is not necessary.

Pathak: I’d love for you to speak directly to our audience, someone that has lupus or has a loved one with lupus. What question or topic do you recommend that they bring up with their healthcare professional to optimize the care for their lupus?

Costenbader: Well, I think that most healthcare professionals—primary care physicians and rheumatologists—will ask about all kinds of symptoms you may be having and how you’re feeling, and getting your labs done, and getting your eyes checked, and going to all these other follow-up appointments. But I think anything that’s important to you needs to be brought into the room as well.
What are your goals? It’s amazing how sometimes, especially for young women, the disease is now, you know, quiet and the doctor’s very happy. But what about those plans for pregnancy? We need to think about that too, and really keep the disease quiet and make sure you’re on the right medications.
What are your goals? I think physicians forget to always be inquiring about what’s going on in people’s lives. And it’s for patients to bring that to their appointments and talk about how their lupus affects their lives and what they hope to be able to accomplish in the future, and how they would hope that their lupus will remain in good control so they can do it.

Pathak: I want to thank you so much for your time and for such an important conversation.

Costenbader: Well, thank you for having me.

Pathak: As we close this episode, I want to share three key takeaways. First, lupus is a chronic, lifelong condition, but it is manageable. Staying connected with your healthcare team, keeping up with labs, and continuing medications even when you feel well are critical to preventing complications.
Second, lifestyle factors matter. Lupus is definitely not your fault, but a healthy diet, stress management, sleep, and avoiding triggers like smoking can lower the risk of flares and improve long-term quality of life. Small changes add up, and it’s important to speak with your healthcare provider, who can help you identify what matters most to you and which small lifestyle changes you can implement to make living with lupus more manageable.
Finally, shared decision making. Shared decision making with your care team and social support system is critical. Bring your goals, worries, life plans, and emotional realities into the exam room. Whether it’s thinking about pregnancy, travel, work, or simply wanting to feel better day to day, lupus care works best when you and your healthcare team communicate openly.
I want to acknowledge anyone listening who’s living with lupus or supporting someone with lupus. Lupus can be confusing, unpredictable, and deeply personal. Dr Costenbader reminded us that understanding the disease is only half the story. The other half is learning how to live with it, how to ask for help, and how to build a team around you.
To find more information about Dr Costenbader and her work, make sure to check out our show notes. Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you’d like to send me an email about topics you are interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered Podcast.