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Risks of Lupus You Should Know


Living with Systemic Lupus Erythematosus (SLE) often feels like a full-time job. Because lupus is "the great imitator," its risks can be stealthy, appearing as something else until they become serious.


As of 2026, our understanding of lupus management has shifted. More than ever positive health outcomes rely on more proactive organ protection and cardiovascular vigilance. Following the 2025 ACR (American College of Rheumatology) guidelines, the focus is now on aggressive "steroid-sparing" treatments to prevent long-term damage.


If you or a loved one are navigating this journey, here are the biggest risks you need to have on your radar and the "red flags" to watch for.


1. The "Silent" Heart Risk

Many people are surprised to learn that cardiovascular disease (CVD), not lupus itself, is actually one of the leading causes of death for those with the condition. Lupus causes chronic inflammation that can accelerate atherosclerosis (clogging of the arteries) at a much faster rate than in the general population.

  • The Risk: Increased chance of heart attack, stroke, and inflammation of the heart lining (pericarditis).

  • What to be aware of: Don't ignore chest pain but also keep a close eye on your "traditional" markers. High blood pressure and high cholesterol are more dangerous when you have lupus.

  • Action Step: Ensure your rheumatologist and primary doctor are co-managing your heart health, not just your joint pain.


You Should Know: A research review published in 2023 found the increased risk of stroke, heart attack, and cardiovascular disease to be about two to three times higher in someone with lupus compared to the general population.

2. Kidney Involvement (Lupus Nephritis)

About 50% of adults with lupus will experience kidney involvement. This is one of the most serious complications because it often has no symptoms in the early stages.

  • The Risk: Permanent kidney scarring or end-stage renal disease (ESRD) requiring dialysis or transplant.

  • What to be aware of: Watch for "foamy" or bubbly urine (a sign of protein leakage), swelling in your ankles/feet (edema), or sudden weight gain.

  • Action Step: Never skip your routine urine tests. These "liquid biopsies" are the only way to catch kidney inflammation before it causes damage.

You Should Know: Rheumatologists and nephrologists emphasize the importance of prevention, early detection, patient engagement, and careful management of kidney disease, particularly when it overlaps with autoimmune or inflammatory conditions.

3. The Double-Edged Sword of Infection

Infection is the second leading cause of death in lupus. This risk comes from two sides: the disease itself weakens the immune system, and the medications used to treat it (like steroids and immunosuppressants) further lower your defenses.

  • The Risk: Severe reactions to common viruses or opportunistic infections.

  • What to be aware of: A "low-grade" fever (100.5) in a lupus patient is often a medical priority.

  • Warning: Steroids can sometimes "mask" the symptoms of a fever, making you feel less sick than you actually are.

You Should Know: “Don’t assume it is your lupus or assume it may be a ‘mild’ infection that will go away” - Dr. Don Thomas, The Lupus Encyclopedia

4. Neuropsychiatric Lupus & "Lupus Fog"

Lupus can attack the central nervous system, leading to what doctors call Neuropsychiatric SLE (NPSLE). This isn't just "feeling down"—it is a biological manifestation of the disease.

  • The Risk: Cognitive dysfunction (memory loss, confusion), severe anxiety, depression, and, in rare cases, seizures or psychosis.

  • What to be aware of: If you find yourself struggling to find words or feeling a "brain fog" that prevents daily tasks, it may be a sign of active disease in the nervous system rather than just fatigue.


You Should Know: People with lupus are at higher risk of experiencing mood disorders, anxiety, and depression. Neuropsychiatric lupus can cause headaches, brain fog, cognitive problems, and depression, and addressing these symptoms is a key part of treatment.

What to Watch For: The "Red Flag" Summary

Lupus is a disease of "flares" and remissions. Recognizing the start of a flare can prevent long-term organ damage.


Common Warning Signs of a Flare:

  • The Butterfly Rash: A red rash across the cheeks and bridge of the nose, often triggered by sun exposure.

  • Unexplained Fever: Any temperature rise not linked to a clear cold or flu.

  • Increased Fatigue: Exhaustion that isn't fixed by a good night's sleep.

  • Joint Swelling: Not just pain, but visible puffiness and warmth in the joints.


Risk vs. Monitoring Table

Potential Risk

Key Warning Sign

Monitoring Method

Kidney Damage

Foamy urine, leg swelling

Routine Urinalysis & Creatinine tests

Heart Disease

Chest pain, shortness of breath

Blood pressure & Lipid panels

Bone Loss

Height loss, easy fractures

Bone Density (DEXA) scans

Infection

Fever, chills, sore throat

Complete Blood Count (CBC)

The Bottom Line

The biggest risk with lupus is delayed action. Because symptoms come and go, it's easy to dismiss a "bad week" as just stress. However, modern treatments in 2026 are highly effective at stopping damage before it starts.


You Should Know: Keeping a "Symptom Journal" is pivotal. Note down when you feel sun-sensitive or when your joints stiffen. Bringing this data to your appointments helps your doctor see the patterns you might miss.

Compiled By:

Kelli Roseta


**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness.   All intellectual property and content on this site and in this blog are owned by morethanlupus.com.  This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2026.


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