In the TV series House, every time doctors are stumped by mysterious symptoms, someone always blurts out: "It must be lupus." This joke has long become a cultural icon, but like every successful joke, it contains a kernel of truth. Lupus, or by its Latin name "Lupus," is one of the most challenging diseases to diagnose, not because it is particularly rare, but because it is a true master of disguise – a disease that can appear differently each time and even fool experienced doctors.
Lupus is a systemic autoimmune disease. The immune system, which is supposed to protect us from infections, becomes confused and attacks the body itself. Which organ will be attacked? That varies from person to person. The kidneys, skin, heart, lungs, joints, and even the brain – almost every system in the body can be involved. And this is exactly the problem – the multiple faces and clinical manifestations are what make the disease so complex to diagnose.
Lupus affects about 1 in every 2,000 people, but the statistic that surprises many is the gender gap. The disease is nine times more common in women, and in most cases, it manifests during the reproductive years, usually between 15–45. The presumed explanation is related to the effect of female hormones on the immune system. Estrogen increases immune system activity, and during the reproductive years, when its levels are high and dynamic, the delicate balance can be disrupted. Smoking is also considered a significant risk factor, and finally, genetic predisposition plays a role in the development of the disease.
From facial rash to nervous system involvement
The most recognizable hallmark of lupus is the "butterfly rash" – redness spreading across the cheeks and the bridge of the nose. But this is only one of dozens of possible manifestations of the disease. In one patient, the disease may appear as joint pain; in another, as extreme fatigue and painful mouth ulcers; in a third, as significant hair loss. In fact, lupus can also manifest as chest pain due to heart lining involvement, kidney inflammation appearing as protein in the urine, and even nervous system damage. The combinations are almost endless – which is why diagnosis is so complex.
What complicates the picture further is the dynamic nature of the disease. Lupus does not look the same over time – not even in the same patient. There are periods of relative calm (remission), and conversely, there are flare-ups that bring a new wave of symptoms, sometimes in a completely different system of the body. Diagnosis relies on a combination of clinical presentation and laboratory tests – detection of autoantibodies in the blood, blood counts, kidney function, and sometimes additional tests depending on suspicion. Often, the patient presents with a single focused complaint, and only during investigation does the full picture emerge.
A revolution in treatment
Lupus is a chronic disease, which, although not curable, can be learned to live with. Until a few years ago, standard treatment relied mainly on steroids, which caused many side effects such as weight gain, high blood pressure, osteoporosis, diabetes, and more. Today, the treatment approach has changed.
At the core of treatment is a drug originally discovered for malaria, now considered a cornerstone in disease stabilization – a daily pill that helps maintain remission and reduce flare-ups. In addition, older drugs affecting the immune system are still in use. In recent years, more innovative treatments have been added – biological drugs. These are monoclonal antibodies that block inflammatory proteins and regulate immune system activity. These treatments allow many patients to reduce or even discontinue long-term steroid therapy, achieve disease remission, and prevent cumulative organ damage.
One of the major challenges in managing the disease is that patients often stop treatment when they feel well. Feeling well does not always reflect inactive disease. The immune system can continue to operate "below the surface" without any noticeable symptoms, and a sudden flare-up can cause significant damage, for example, to the kidneys. Treatment is lifelong, not because one feels unwell, but to continue feeling well.
And the important message is that once the mask is removed and the diagnosis is accurate – it is possible to live a full life. The disease may remain in the background, but with precise treatment and proper monitoring – it does not have to control life. During Purim, we remember that not everything hidden is meant to stay hidden; sometimes, we just need to dare to look a little deeper.
The author is the Head of Complex Rheumatology Services at the Rheumatology Institute, Beilinson Hospital, Rabin Medical Center.