Cracking the Lupus Code

Clara Mendel

Welcome back to the Lupus podcast—Clara here, your slightly-overcaffeinated ER nurse host. Today, we're cracking the elusive lupus code, and honestly, if you’ve ever tried to distinguish between systemic lupus erythematosus and discoid lupus erythematosus on a chaotic night shift, you know it can feel like medical detective work. SLE and DLE—think of them almost like cousins. SLE’s the troublemaker, sticking its fingers in just about every organ system—kidneys, brain, skin, you name it. With SLE, the list is long: memory lapses, seizures, confused behavior if the brain’s inflamed, and of course, who could forget that classic malar, or “butterfly,” rash sweeping across the cheeks. Arthritis, joint pain, fatigue—those are more the “everyday” symptoms, but SLE can really sneak into the organs for some serious drama. DLE, though? It keeps things more at the surface—skin, usually the face, ears, scalp. Red, scaly lesions that sometimes scar or cause hair loss. And let me tell you, if you ever had a patient run their hand through their hair and come away with clumps, it sticks with you. DLE can actually progress to SLE, but for most, it stays skin-deep... though no less life-changing, especially when it comes to how people feel about themselves.

Clara Mendel

Now, lupus isn’t just “bad luck”—there's a whole medley of risk factors making some folks more susceptible. Hormones play a role—that’s why most patients are women, especially aged 15–45, and there’s a strong pattern among African American, Hispanic, and Asian women. High estrogen seems to ramp up symptoms, like before periods or during pregnancy, but research hasn’t totally figured out the link yet. Genetics are no joke either—over 50 genes are on the suspect list, so it tends to run in families. Environmental triggers? UV light is a big one. I tell my patients, if there’s one thing you wanna dodge, it’s the midday sun. Stuff like certain meds, stress, infections, even the Epstein-Barr virus—all can poke the immune system and wake up the beast.

Clara Mendel

I’ll confess, even after years on the job, the symptoms can be tricky. Let me take you back to a night shift last summer. My brain was running on—maybe—three hours of sleep and vending machine coffee, and I was desperately trying to remember that mnemonic... “SOAP BRAIN MD.” All these letters, and I’m thinking—what? Suds? Soap operas? Then my patient walks in with this look—fatigue that seemed to drag her whole body down, a beautiful but unmistakable butterfly rash, and complaints of joint pain. It finally clicked…I fumbled through the symptoms, probably butchered the pronunciation as usual, but we started connecting the dots right there. That’s why recognizing SLE versus DLE is part science, part intuition, and part, well, caffeine-fueled guessing.

Clara Mendel

Here’s the thing—diagnosing lupus is, frankly, frustrating. Ask any nurse: patients can bounce from doctor to doctor for years. Symptoms wax and wane; today’s malar rash is tomorrow’s achy knees, then everything vanishes for a month. Lupus loves to put on a disguise—sometimes it looks like arthritis, sometimes rheumatoid disease, even MS. That’s why on average, it takes about six years to put a definitive name to it. I might be wrong, but I think I once read it’s even longer if SLE is less aggressive in the beginning—or if patients aren’t believed when they describe “invisible” issues like fatigue or weird rashes.

Clara Mendel

So how do we play detective? Lab tests are our best friends here. First, there’s the ANA—that’s antinuclear antibody—positive in just about everyone with lupus, but not exclusive to it, which is annoyingly unhelpful. When you see anti-dsDNA or anti-Sm antibodies show up, that’s when the lupus siren really starts blaring, especially in SLE. We also lean on inflammation markers—CBCs showing low white or red cells, elevated ESR or CRP, and urinalysis looking for protein or blood—because lupus kidneys are super sensitive. Sometimes we have to take a bit of skin, do a biopsy if we think it’s DLE but aren’t sure. Imaging steps in if we’re worried about organs—CTs, MRIs, X-rays—plus, don’t forget checking those complement levels, like C3 and C4. Low values point to lupus flare-ups.

Clara Mendel

I’ll never forget this patient—a young guy with what we thought was just stubborn facial DLE, but after months of new headaches and frothy urine, it turned out his lupus had jumped systems and hit his kidneys hard. That’s why, as nurses, we’ve gotta be relentless advocates. If someone’s symptoms are written off as “just stress” or “normal tiredness,” we need to push for more workup. I always say—if you spot a red flag, especially when there’s organ involvement, escalate, escalate, escalate. The earlier the intervention, the less the damage down the road.

Clara Mendel

One thing we still wrestle with: what’s the best way to make sure these invisible symptoms get taken seriously? Nurses are often the first to notice when something changes, and half the battle is advocating for our patients to get the right tests, the right specialists, and the right dose of empathy. It’s one of those things—sometimes you know it in your gut, even when the labs or the textbook haven’t caught up yet.

Clara Mendel

Alright, let’s talk action—what’s in the nurse’s toolkit? Well, lupus care is a balancing act. There’s the “gentle” side—NSAIDs for joint pain, sun avoidance, preventative flu shots, balanced routines—and the serious stuff: corticosteroids for major flare-ups, immunosuppressants when things get gnarly, and antimalarials like hydroxychloroquine. That med...every time, I have to double check the pronunciation in my head...but it’s a real gamechanger for skin and joint symptoms, just gotta remember about those regular eye exams because of retinal risk.

Clara Mendel

Nursing priorities? I always say: monitor, educate, support. We’re watching for infection—those meds leave the immune system exposed. We’re on side effect patrol: is my patient suddenly bruising, is there kidney trouble, is anyone seeing strange vision changes? And we can’t ignore reproductive health—lupus pregnancies? That’s high risk territory, with increased chances of miscarriage, preeclampsia, HELLP syndrome, or premature labor. We’ve gotta be proactive about family planning, sometimes even involving specialists before conception.

Clara Mendel

I want to share a case that hits close to home. Maya—a young teacher who reminded me that lupus isn’t just physical, it’s profoundly social. She developed facial rashes—classic malar and some DLE spots—that forced her into hiding. She confided that standing in front of her classroom, she felt exposed in a way that textbooks never describe. Side effects of steroids left her anxious and isolated. We built a care plan focused on education and support—she learned about sun protection, built routines for gentle exercise, and connected with peer groups. I’ll never forget when she emailed me months later to say she’d led her school’s lupus awareness week, rashes and all. Sometimes, the best medicine is feeling understood.

Clara Mendel

So, if I could sum it all up? Lupus care is about vigilance—being ready to pivot, educate, and support, for both acute flares and the long haul. Our work empowers patients to reclaim some control, even on the hard days. That’s it for this episode—if you enjoyed this dive into lupus, stay tuned, because we’ll keep unraveling more together next time.