In many ways lupus is a “master of disguise.” Living with lupus is marked by unpredictable cycles of flares and symptom-free periods. While some flares are severe and life-endangering, even minor symptoms can cause serious, and sometimes irreversible, organ damage. That is why early detection is not just helpful … it can be life-saving!

So, how do you spot a flare before it strikes, and how can lab tests fit into this complex puzzle?

In this article, we will briefly explore what lupus flares really are, the importance of detecting them early, and how patients and healthcare providers (together!) can best catch and treat them early.

Disclaimer: This blog is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.

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• What is a Lupus Flare?
• Why Detecting a Flare Matters
• The Art and Science of Detecting a Flare
• Practical Strategies for Detecting Flares
• Video: “Lupus: What Happens to Your Body During a Lupus Flare?”
• In Conclusion

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What is a Lupus Flare?

A lupus flare, simply put, is a period when the disease becomes more active. It is a measurable increase in disease activity involving new or worsening clinical symptoms signs or lab test measurements.  Flares can affect multiple organs, including the skin, joints, heart, brain and some that, like the kidneys with lupus nephritis, may provide few noticeable symptoms.

For some living with lupus, the triggers for their lupus flare can be painfully obvious. For others, flares may seem to come out of nowhere. Yet, there are some common triggers that everyone should be aware of:

• Sunlight (UV exposure),
• Infections,
• Forgetting to take medications;
• Stress (both emotional and physical),
• Hormonal shifts,
• Certain medications and foods.

Flares also come in a wide range of intensities.

• Some flares can be mild, and present minor joint stiffness, fatigue and some brain fog.
• Some are severe, involving significant organ inflammation and damage, debilitating pain, dangerously low blood counts or extreme emotional and cognitive problems.
• And with some flares, there may be no significant symptoms at all. These are sometimes called “silent flares” and are often associated with lupus nephritis or conditions with blood involvement.

Regardless of their intensity, ALL flares need to be taken seriously.

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Why Detecting a Flare Matters

Early detection of a flare allows patients to quickly respond and limit the damage that they can cause.  This may mean adjusting immunosuppressive medications or making temporary changes in corticosteroid dosages. Early treatment not only reduces damage to organs, but can significantly improve a patient’s quality of life. Unfortunately, many patients don’t recognize a flare until it is in full swing.

Why? Flares don’t look the same for everyone.  Also, not all lupus-like symptoms are caused by lupus.  They may indicate underlying infections or reactions to medications.

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The Art and Science of Detecting a Flare

Because lupus is a heterogeneous disease, the signs and symptoms of an impending flare are not always obvious and can change over time, making flare detection a mix of science, intuition, and data collection. Here are some ways to better detect your next flare:

Patient-Reported Symptoms: Listening to Your Body

You are your own flare “expert!”  Always be aware of what your body is telling you and look for the warning signs of a possibly imminent flare:

• Worsening fatigue;
• New rashes or photosensitivity;
• Hair loss;
• Change in appetite;
• Low-grade fever;
• Increased joint pain or swelling;
• Mouth ulcers.

Tracking these symptoms in a daily journal or mobile app can help you and your providers identify patterns that predict flares. In fact, some flare patterns are so subtle they are only visible in hindsight after years of tracking and taking notes.

Case in point: A 2020 study by Katz et al. found that patients who regularly used symptom-tracking tools were more likely to report flares early, and this correlated with better disease outcomes.

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Laboratory Clues: What Do the Biomarkers Say?

While the symptoms that patients feel represent subjective clues, biomarkers offer somewhat more objective data. Some key lab tests used to predict or confirm lupus flares include:

• Anti-dsDNA antibodies: When these spike, it can signal a flare, particularly in lupus nephritis.
• Complement levels (C3 and C4): These proteins drop during a flare due to their consumption in immune complex formation.
• ESR and CRP: Markers of inflammation; ESR is often more reliable in lupus as CRP may remain low unless there is infection or serositis.
• Urinalysis: Kidney damage rarely causes noticeable symptoms to patients.  So, regular urine tests are important for detecting blood, protein, or cellular material that may indicate kidney involvement before symptoms become obvious.  Here is a link to KFL’s article, “Understanding Your Urinalysis” here: https://kaleidoscopefightinglupus.org/urinalysis/

It is important to remember that lab results alone are not enough. Not every rise in anti-dsDNA signals a full-blown flare, and not all patients show changes in complement levels. The key is tracking trends, not just single snapshots!

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The New Technologies: Flare Prediction with AI 

Recent advances in machine learning and wearable technology are beginning to change how clinicians may detect lupus flares in the future. Researchers are now developing algorithms that analyze multiple data points, like:

• Variability in heart rate;
• Sleep patterns;
• Skin temperature;
• Patient-reported symptoms, and of course
• Lab test results.

Altogether, these may be able to predict flares before they occur.

In a 2023 pilot study at Stanford University, researchers developed a flare-prediction model using smartwatch “biosignals” as well as symptoms from patient input. This model predicted flares with 76% accuracy a week before symptom onset!

Although still experimental, these tools may one day become easy-to-use apps that allow patients to personalized their own lupus management … in real time!

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Practical Strategies for Detecting Flares

While not everyone has access to experimental technology, all patients can benefit from the following practical approaches:

1. Track Daily Symptoms: Use paper journals, mobile apps (like LupusMinder or Symple), or custom spreadsheets to log:

• Pain levels
• Fatigue
• Rashes
• Mood
• Temperature

A good resource for symptom tracking can be found on GSK’s website here: https://www.usinlupus.com/?cc=prnt_GOR2I0GSVS2237980&mcm=60003

A very good list of current mobile apps specific to lupus can be found here: https://www.webmd.com/lupus/ss/best-mobile-apps-for-managing-lupus

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2. Monitor Triggers and Ask Yourself These Questions:

• Was it a high-UV day?
• Are you under unusual stress?
• Did you recently stop taking medication?
• Was there a change in your diet or exercise routine?

Basically look for connections among the environmental and emotional triggers to your symptoms!

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3. Stay Up-to-Date on Labs: Schedule regular checkups (including urinalysis), and ask for copies of your lab results. You can even build a personal “lab trend chart” over time.

4. Develop a “Flare Action Plan:” Work with your healthcare provider to define a plan: What symptoms merit calling the clinic? What medications should be adjusted?

5. Build a Support System: Connect with other patients, caregivers, and advocacy groups. Join a lupus support group or follow community forums where people often share early-warning signs that may fit your own experiences … and that may not yet be recognized by some healthcare providers!

6. The Role of the Rheumatologist:  Of course, your rheumatologist plays a crucial role in helping detect flares!  They can offer context, an expert interpretation of your symptoms and lab tests. Increasingly, they are encouraged to share their decision-making with patients. So, take advantage of any opportunity to detail your personal experiences with your flares and your triggers … and if necessary, ask to take an active role in your own lupus management.

Again, remember, you are your own flare “expert!”

Telehealth, can also be important in detecting flares early, especially when a patient cannot physically visit the clinic as is all too common in rural communities.  A brief video call and an up-to-date symptom log may be enough to adjust medications before a flare gets worse.

Again, remember, you are your own flare “expert!”

Telehealth, can also be important in detecting flares early, especially when a patient cannot physically visit the clinic as is all too common in rural communities.  A brief video call and an up-to-date symptom log may be enough to adjust medications before a flare gets worse.

For more on symptoms and lupus flares, check out these KFL’s resources:

• Our article, “Lupus Flares: Recognizing One, Triggers, and Prevention” https://kaleidoscopefightinglupus.org/lupus-flares-recognizing-one-triggers-prevention/
• Our educational video, “Lupus: What Happens to Your Body During a Lupus Flare?” below:

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In Conclusion

Lupus flares may never be entirely predictable or preventable, but earlier detection is getting the attention it deserves. By combining subjective awareness, objective biomarkers, and predictive technologies, patients and clinicians can often stay one step ahead.

For people living with lupus, that can mean less organ damage, fewer hospitalizations, and perhaps most importantly, a restored sense of control.

While a hallmark of lupus is its unpredictability, knowledge and vigilance are powerful weapons … and the more we learn, the more we can predict, treat and possibly prevent lupus flares!

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References

Adamichou, C., & Bertsias, G. (2017). Flares in systemic lupus erythematosus: diagnosis, risk factors and preventive strategies. Mediterranean Journal of Rheumatology, 28(1), 4–12. https://doi.org/10.31138/mjr.28.1.4

American College of Rheumatology. (2022). Systemic lupus erythematosus clinical guidelines. https://www.rheumatology.org/

Chang, R., Singh, M., (2023). Predicting lupus flares using wearable biosensors and machine learning.” Journal of Autoimmunity, 140, 102920.

Kaleidoscope Fighting Lupus. (2023, May 13). Lupus: What happens to your body during a lupus flare? [Video].  YouTube. https://www.youtube.com/watch?v=i4OPznWi1v0

Katz, P., Yazdany, J., & Trupin. (2020). “Development and evaluation of a mobile health application for symptom tracking in lupus.” Arthritis Care & Research, 72(6), 835-843.

Petri, M. et al. (2019). Serial anti-dsDNA and complement as predictors of lupus flare. Lupus Science & Medicine, 6(1), e000351.

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Author: Greg Dardis, MS      

Professor Dardis was the Chair of the Science Department at Marylhurst University and is currently an Assistant Professor at Portland State University and the American College of Healthcare Sciences.  His focus has been human biology and physiology with an interest in  autoimmunity.  Professor Dardis is also a former President of the Board of Directors of Kaleidoscope Fighting Lupus.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.