October 28, 2023
Navigating and dispelling lupus myths can be as challenging as understanding the complexity of lupus itself. Knowledge is power, and dispelling lupus myths is crucial. Getting accurate information is the first step to empowering yourself and those around you.
In this session, we discuss lupus myths like the ones below:
Hi, I am Dr. Brittany Panico. I’m a board certified Rheumatologist, and I practice at Summit Rheumatology in Gilbert, Arizona, one of the East Valley suburbs of Phoenix, and I am so excited to be here today to talk about lupus!
I’ve been in Rheumatology now for over a decade, and just love all aspects of treating patients with autoimmune conditions. I started out treating lupus in Chicago, and really developed an interest in specializing in complex patients. So I’m very familiar with all forms of lupus, particularly patients who’ve been hospitalized and then transitioned to outpatient. So, now I am only outpatient in my medical practice and seeing new patients and just really excited to be here today to talk about lupus.
Moderator: So one lupus myth that we see come up a lot is that you can cure lupus with diet. You talk a little bit about this?
Yes, and I have an interest in talking about anti inflammatory diet concepts, specifically with patients. But I do think that there is a big myth, so to speak, out there, that we can cure autoimmune conditions, particularly lupus, by changing the way we eat. And we want to be really careful about using the term “cure,” because that implies that with a diagnosis like lupus, that we can do something to then eradicate that condition from our body, and with autoimmune conditions – and lupus in particular – we don’t use that term because our immune system isn’t something that we necessarily eradicate. Transplant, bone marrow transplant is a different story. But with diet alone, we can’t necessarily change the way our immune system operates to fix lupus by itself. So in combination with medical treatment, if patients feel like an anti inflammatory diet is helpful for them, then I don’t discourage it. But I do not use the term that we can “cure” lupus specifically with diet changes alone, we certainly can help prevent severe flares and help our medication work better in our body when we eat healthy and nutritious food, but we can’t necessarily cure it completely it alone.
Moderator: Makes sense. Another myth that we hear about a lot is, does lupus eventually go away?
Yeah. So that’s a common question. And I do go over that with patients seeing me in the office as well, because lupus is something that can wax and wane. It’s a spectrum of a condition from the time of diagnosis throughout treatment and when, a term that we call remission, meaning maintenance of a phase where your condition is controlled.
And so will it ever go away? We never say never in the world of rheumatology. However, it’s not likely that it goes away 100% again, kind of associating that with the term cure. There are instances where patients maintain remission for long periods of time on very minimal medication. There are periods where patients come off medication and they think that lupus is gone.
But it’s always in the back of our minds as healthcare providers, specifically rheumatologists, that could it resurface again. And it’s very well possible that it can come back even if you’re off medication. So again, it’s not very common that we use the term again that lupus will go away forever, but we certainly can treat patients, and we do our best to treat to minimal symptoms, minimal disease activity through monitoring blood work, through follow up appointments, checking in with how you’re doing, things like that.
But we don’t suggest that, again, stopping your medication, lupus will disappear forever.
Moderator: Certainly. Thank you so much. Along the same lines of our diet myth, we often hear from family and friends that lupus can be cured with exercise. That’s something that the community deals with a lot. Can you touch on that myth that lupus can be cured with exercise like yoga?
Absolutely. So, along the same lines, like you mentioned, when we talk about curing lupus with diet, exercise is helpful for maintaining, again, a healthy body, right. Our strength and blood flow, circulation, heart, managing our heart and blood pressure, weight management, all things healthy in that regard. But we can’t necessarily use exercise alone to cure an autoimmune condition. And I do think it’s really important to kind of tie in the importance of sleep in there as well because when we think about yoga and relaxation, the meditation aspect of what that does for our brain chemicals and our body and how it helps us sort of center ourselves is really important with a chronic condition and making sure you’re getting enough sleep so that you have the energy than to exercise and make healthy decisions about food and lifestyle choices.
And remember to take your medication. So all of that intertwined is super helpful and encouraged, but just by itself, again, we don’t expect that exercise can specifically put lupus into remission or cure it.
Moderator: Our next myth is that lupus makes you infertile or unable to get pregnant. Can you address that?
This is a super a great question, and I’m really glad that it came up because especially for young females, when we often will diagnose lupus in women who are of childbearing age, right? So women who may want to start a family or are continuing to have children, and there are certain aspects of having lupus that we want to make sure that we’re setting you up for a successful pregnancy if you do desire to get pregnant. So things like checking your labs to make sure we understand your risk factors, making sure that we’re treating your symptoms and your lupus primarily before you try to become pregnant to, again, help you have the best success.
There are certain medication treatment options that we don’t suggest that you try to become pregnant so they don’t make you infertile, so to speak, but it’s not recommended due to the risk of birth defects or severe consequences to that pregnancy. So we have to sort of understand what language we’re using as a patient and a healthcare provider as well, of understanding that it’s not specifically infertile or inability to become pregnant.
It’s what are your risk factors if you are to become pregnant. There are instances, too, if you are diagnosed with very severe lupus. Again, kind of a patient that we might meet in the hospital or have kidney disease that isn’t controlled, or blood pressure that isn’t controlled with your lupus.
We want to make sure that we control those things with medication before you try to become pregnant, if possible, so that you have the best outcome. It is common that lupus patients may have a higher rate of miscarriages and stillborn so that’s something that we counsel patients in close coordination of care with their OBGYN or maternal fetal medicine or high risk doctor.
So it’s very much a team approach when a lupus patient does become pregnant. But lupus by itself, the entity of that diagnosis, does not mean that you would be infertile or lose your ability to get pregnant.
Moderator: Our next lupus myth is that only women get lupus!
So this comes up so often because I’ll see young men come in and have symptoms of lupus and be very sometimes it’s hard to wrap our head around, why is this happening to me? Right? Heard that lupus only happens to females, and it is a very common misconception. Lupus is more commonly diagnosed in females. That is true. We don’t completely understand the genetic reason behind that, but it is more commonly diagnosed in women.
However, men of all ages can still be diagnosed with lupus as well. We have pediatric patients who are diagnosed all the way up to patients who are older that are diagnosed with lupus, male patients. So it’s not exclusive to females at all. One of the things I do really want to advocate for men who feel like they have symptoms of lupus or who have had blood testing that may indicate that they have lupus and they’re being told that they don’t.
Have, Lupus, is to really try to advocate for yourself and to really get that experienced healthcare provider visit if you’re able to, if you have access to a Rheumatologist. Because a lot of times in the medical community, it’s often misunderstood that men can have lupus just the same as women, and males tend to present a little bit differently than females, too.
So the symptoms that we hone in on and the way we diagnose lupus in women does not necessarily translate to how we diagnose it in men. And so that’s an important point to remember also, is that if things aren’t going well, if you’re not getting better on treatment, and you have a diagnosis of lupus to really push to advocate for yourself about, what is it that could make me better? Because your symptoms or your features may be again, different than what your healthcare provider is used to seeing in a female patient.
Moderator: Very true. Speaking of that differentiation, one of our other really commonly brought up myths is if you don’t have a butterfly rash, then you don’t have lupus. It’s not visible, then you’re not in a flare. Can you address that?
Yes, that’s absolutely a perfect you know, I’m in Arizona, so when we think about the butterfly rash, we think about sun exposure. Sun tends to provoke lupus flares in patients, which I think is maybe one of the questions that we’ll segue into later. But the butterfly rash is often seen after sun exposure. So people vacationing at the beach, or you’re just out and forgot your sunscreen, and then a day or two later, a week later, you might notice that you have more of that butterfly rash appearance. Not everybody who has lupus has that rash at all. I have had many, many patients diagnosed with aggressive lupus who have never had the facial or malar butterfly rash. So it’s one of the criteria or symptoms that we use to, again, link the probability or the likelihood that you have lupus.
Again, when we see that distinct butterfly rash, it makes it much more recognizable for us in healthcare to diagnose lupus and to see that you’re having a flare, but you can still have lup DYS, nephritis. You can still have lupus in your blood. You can still have mental health effects from lupus. You can still have other features of lupus that are very active without having that malar rash.
Moderator: So true. Our next lupus myth is that lupus only affects your joints, which I think you sort of just addressed right now. But do you have anything else to add about the fact that people typically associate lupus in some situations with having joint issues only?
Absolutely. So lupus arthritis or lupus that does affect the joints is, again, another component of the bigger picture, that is lupus. So some patients have joint pain or joint swelling or even swan neck or we call jacuds deformities of the fingers, where the shape of your joint starts changing. But again, not everybody has that. Every patient may experience their lupus joint manifestations a little bit differently. So it is important to consider when patients have muscle aches and joint aches and joint pain and joint swelling that that absolutely may correlate with a flare, but it doesn’t have to be there.
Moderator: One of the other myths that we see a lot is that lupus is contagious. Can you please just address that for anybody that’s listening that may be a friend or a family member that’s not as familiar with the condition?
Yes, absolutely. So lupus is something that happens inside of our bodies with our immune system, where the signaling gets erroneously triggered, meaning that it’s doing something it’s not supposed to, that is not contagious outwardly to another human or to a pet.
You don’t have the ability to give lupus specifically to anyone else. There are instances where mothers with lupus can have children who have signs of neonatal lupus. That is a whole different story. But for the most part, just our patient that we diagnose with lupus, lupus isn’t something that we can give to someone else. It’s not transmitted through blood. So even sharing bodily fluid contact, blood contact, again, that’s not how we we develop lupus. And so it. Is not contagious having family members or close friends or let’s say you have a roommate or somebody that you’re in close proximity to who has a diagnosis of lupus, a lot of times it’s that invisible. We kind of refer to a lot of autoimmune things as an invisible illness, so it’s not outwardly always visible. And that too, kind of creates a little bit of the stigma of, okay, well, if you can’t see know, can I share it or can I give it to somebody? And the answer is no. It’s not something that we can transmit to someone else, like a virus or a cold or an infection.
Moderator: Thank you so much for explaining that, Dr. Panico. I think I’m going to jump into some of the questions that we’re getting in, if that’s okay.
Q: Is it possible to go into permanent remission with lupus? Or once you have lupus, will you always have lupus? I think you touched on this a little bit earlier, but if you wouldn’t mind addressing that, that would be awesome.
Sure. So permanent is kind of a strong word that is likened to cure. So kind of like how I mentioned earlier, we don’t know specifically that someone can be in permanent remission because the future is never known. Right. Our immune system is a living, breathing entity within our body that we can’t control, and so the likelihood that someone could be in remission for a long period of time is not specifically known. I will say the risk factors. So meaning how many positive antibodies you have, how severe your lupus had been in the past, is a good indication of whether or not it may be in remission longer once you achieve that remission point. But we don’t necessarily use the term permanent remission.
So once you have that diagnosis, there’s always this thought of whether or not it may come back again if you’re in remission. So we don’t like to forget that our patients have that diagnosis, but permanently. There’s not a specific way for us to be able to tell that.
Q: What causes or triggers lupus flares most of the time?
So this is different for individuals, but most of the time, our most common thing that triggers lupus flares is sunlight or exposure to sunlight. So people who live in areas where they’re out in the sun again, coastal areas where you’re outside, living here in Arizona, places that you’re exposed to the sun in a prolonged time, can certainly trigger lupus flares. For some people, it’s stress. It can be lifestyle. Just lifestyle management. So we did talk about like, yoga and diet. Those things can help decrease flares, but increased stress response can increase flares and then also not being adequately managed by medication. A lot of people opt for the least amount of medication possible, but sometimes the least amount of medication isn’t what keeps you from having flares. So if you’re on sort of a very mild or minimal regimen, you may have persistent flares pop up because you’re not on enough treatment.
So that is something that I do want to emphasize, that if patients continue to have flares, that’s really great question of why? How are we helping prevent those flares from happening?
Q: Do you recommend that patients typically ask their Rheumatologist if they’re experiencing really frequent flares?
Yes, that should be a point of conversation at follow up visits. That’s something that I ask my patients about flares in between visits. What does a flare mean to you? When we refer to flares, what are we exactly talking about? And that way we can grasp a measurement of, okay, are your labs showing that your lupus might not be as optimally controlled? Are there things that we might be able to adjust? Like, again, getting enough sleep and things that we have control over that we can adjust?
Q: How long do lupus rashes typically last?
That’s a great question, and the answer is that it’s pretty unique to each individual. So the color of your skin, the underlying skin tone can play a factor because of the way our skin is pigmented. So fair skinned individuals may have a different time frame than darker skinned individuals.
And the shade of that lupus rash may again factor in with how long it typically lasts on each person. But ideally, we would again use treatment measures, medication and sun protection to help decrease how long the skin flare lasts. If you have cutaneous lupus or discoid lupus, that’s a little bit different.
So patients can have systemic lupus and skin lupus. So the butterfly rash may kind of coexist with something like discoid lupus. So that time frame is going to be variable, again, depending on how sort of in depth that scar process is happening. But the majority of butterfly rashes or that malar rash that we typically see with lupus can last anywhere from days to weeks for some patients.
Q: Can you get lupus later in life, like at 50 or 60? Is that something that you see in your practice?
Yes, absolutely. So when I was trained as a fellow, so coming right out of residency, there was this sort of conception or idea that we typically diagnose lupus in younger people. We think of childbearing years, and for men, again, that’s variable. Right. But we think about lupus primarily being in younger folks. However, we’re seeing a lot, lot more patients newly diagnosed with lupus later on in life. Like you said, 50 and above. And part of that, we don’t necessarily know why that’s happening.
There’s some kind of theories that after COVID, the way our immune system has changed with being exposed to the virus may alter our ability to develop autoimmune conditions. So we do see patients, I would say now more commonly than we did years before. But yes, you can certainly be diagnosed with lupus after the age of 50.
Q: And in those situations, do you find that when you’re diagnosing patients in those later years that they maybe have always had lupus and it had not maybe manifested fully? Or is it more often that it’s new symptoms that you’re diagnosing someone in a new situation?
I think there’s a little bit of both scenarios. There’s definitely this sort of brewing period that some people have had, kind of a low lying level of lupus, and then it actually comes out and manifests, and then we diagnose it. And then there’s patients who just develop something very suddenly. I’ve seen it both ways.
Q: What should I say to my friends who think that yoga and green juice will cure my lupus?
That’s a great question. And I tend to talk to my patients a lot about how we communicate our diagnosis with family and friends. And I think that’s always something with each individual, how they feel comfortable talking about their diagnosis. I think if you are in a place where you’re willing to accept outside advice and say, thank you for your concern, I’m doing the best I can working with my healthcare provider. That’s kind of one way to sort of acknowledge the help that they’re trying to provide, while not necessarily feeding into, again, the hype that lupus can go away without medication.
Specifically. I think that too sort of the peer pressure of trying to take advice from everyone around us, from the Internet, from our family and friends. It does get to be a lot. And I tell my patients, if you ever have questions of things like that, bring those to our visit, because I can help you kind of come up with a script of how to frame am, a way to have those conversations. And I think resources. Like this are really helpful, where we can at least be comfortable and confident in our own decision of how we’re managing lupus. For each individual to then at least acknowledge and, again, say, thank you for your concern, but not necessarily feel like you have to take on that advice that may not be, again, medically supported or soundly supported. There’s a lot of literature out there that does suggest, again, diet and exercise can cure lupus. And so people, I think, mean well and want to provide alternative solutions, but at the heart of what lupus does inside of our body, there just isn’t a way that we know that’s possible to have that benefit without, again, the combination of medication and know coordination of care with your medical team.
To learn more about Dr. Panico’s practice, located in Phoenix, Arizona, visit https://summitrheumatology.com