Lupus flares are the often unpredictable and debilitating bouts of symptoms that afflict many living with lupus.  For some they may be rare events, but for others, they are an ever-present source of worry.  This is an overview of lupus flares and suggestions for how to reduce their frequency and severity.

• Introduction
• What is a lupus flare and how do I recognize one?
• What can trigger a lupus flare?
• Can anything prevent a lupus flare?

Introduction

Systemic lupus erythematosus is a very long name for a very complicated disease that is more commonly known as SLE or lupus.  Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin.  SLE can affect nearly every organ system in the body. The skin is no exception, and in fact, may be involved in 70-80% of cases, causing sores, ulcers and/or rashes. Because lupus is a multi-symptom disease, it can take years to properly diagnose.  Lupus is considered a connective tissue disease and will often “overlap” with other such connective tissue diseases such as scleroderma, dermatomyositis, rheumatoid arthritis, and Sjogren’s syndrome.

 

What is a lupus flare and how do I recognize one?

Since lupus itself is a condition that can vary dramatically from one person to the next, it can also be difficult for everyone to agree on one definition for what it means to experience a lupus flare.  This challenge is even more daunting since it is not uncommon for someone to experience flares without having measurable test results to prove it.

This is not just a problem for those living with lupus, when they try to explain to others what they were feeling;  it is also a challenge for researchers in the medical community.  If every country in the world or even every research lab had its own definition of a lupus flare, it would be very difficult for healthcare practitioners and researchers to compare notes much less come to consensus on the frequency and severity of flares and the possible effects of treatments.  Clinical research would stall.

So, a multiyear process to create an “official” definition of a lupus flare began in earnest in 2006, led by the Lupus Foundation of America and a wide range of researchers and clinicians from around the world.  The results were published in a 2011 article in the journal, Lupus.  From this work, this definition was adopted:

“A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or laboratory measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.”

This is a rather clinical sounding definition, but that was exactly what was needed, and it includes both quantitative results of lab tests as well as the more qualitative opinions of the patient.

Beyond this definition, there is also a need to describe different levels of flare symptoms. So, flares can be classified as mild, moderate, or severe. For example:

• A mild flare could perhaps be signaled by a lupus rash.
• Moderate flares could include the rash, fatigue, and joint or muscle pain, and
• Severe flares could potentially cause damage to the organs including fluid buildup around the heart or even kidney disease or failure (called lupus nephritis), which would require immediate medical attention.

Of course this begs the question, what do we call the periods of time, when those with lupus are not experiencing a flare?  The times that lupus patients have few to no symptoms are commonly called remissions. Some physicians are uncomfortable with the term “remission” as lupus symptoms rarely disappear completely.  They may, instead, choose to use the term “quiescence” (pronounced: kwee-ess-ence).

So how is a lupus flare recognized?

Most lupus patients will have symptoms of muscle and joint pain as well as fatigue regularly, so what makes a flare different? Here are some warning signs of a pending lupus flare:

1. aching or increased swelling of the joints;
2. weakness or pain in the muscles;
3. unusually high or more frequent fevers;
4. an increased level of fatigue or extreme exhaustion;
5. hair loss;
6. headaches;
7. dizziness or forgetfulness;
8. abdominal discomfort or digestive problems;
9. the development of a rash; and
10. any new or unexplained symptoms.

*It is important to report any of these with your healthcare practitioner as soon as possible so that they can quickly assess and treat any symptoms that could signal a flare. Keeping a daily symptom journal can be a helpful tool.

 

What can trigger a lupus flare?

Lupus is an autoimmune disease. This means that the immune system, when activated, creates auto-antibodies that attack not only an invading virus, but will turn and continue to attack healthy cells and organs, thus causing inflammation. Therefore, anything that stimulates activity in the immune system can cause a lupus flare.

Here is a list of potential flare triggers:

1. Infections: Infections, like a cold or flu, can activate the immune system and trigger a flare.
2. Stress: Flares are common after either emotional or physical trauma (surgery, accidents, emotional distress).
3. Pregnancy: Flares are common during the pregnancy as well as during the period directly after the birth of the baby.
4. Sunlight: This is true especially for those with photosensitivity.
5. Starting or stopping a new drug: Certain drugs and herbal supplements have been shown to trigger lupus flares.  Please consult with your healthcare practitioner about sulfonamide antibiotics or any other herbal supplements you take or plan on taking.

Can anything prevent a lupus flare?

There are several ways in which the occurrence and/or the severity of lupus flares can be significantly decreased.  From the pharmaceutical side, there are a growing number of drugs that are prescribed for the different manifestations and symptoms of lupus.  These, in turn, can have an effect on the experience of the lupus flare itself.  The most common of these are the anti-malarial drugs – most often hydroxychloroquine (Plaquenil)  – and the corticosteroids, such as Prednisone.  Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, can help with some symptoms of flares and the more aggressive therapies, such as immunosuppressants (methotrexate, azathioprine and others) and biologics, like Benlysta, can also have dramatic effects on flares as they attack the underlying issues of lupus.

Note:  It is very common for individuals with lupus, who are having no symptoms, to feel as though they are better and stop taking their medications without first consulting their healthcare practitioner. This is very dangerous. Stopping a prescribed medication like Plaquenil could feasibly cause a flare. Again, please speak clearly and often with your healthcare practitioner about any and all medication decisions. Ask as many questions as you need to make sure you feel comfortable and have a clear understanding of what you are taking and why. Be sure to make any new practitioner aware that you have lupus before they prescribe any medications. This is also relevant advice when considering receiving any immunizations. Your healthcare practitioner has probably created a plan of treatment that was specifically designed for you and your lupus symptoms. The most important thing is for you to completely understand this plan and the steps needed to keep your disease under control and avoid a lupus flare.

Your plan may include some or all of the following:

• take your prescribed medications as indicated by your healthcare practitioner;
• physical and emotional rest;
• aggressive treatment of infections;
• exercise;
• good nutrition;
• avoidance of direct sunlight and other sources of ultraviolet light, see our blog on photosensitivity; and
• watch for stress. Having a chronic illness can understandably cause anxiety and depression which can lead to stress.  Finding ways to manage stress is very important. This is often called a mind/body balance.

Sometimes, despite you and your healthcare practitioner’s best attempts, you may still experience a lupus flare. If you suspect that you are having a flare, please contact your practitioner immediately so that any adjustments to your treatment plan and medications can be made. We hope that this has been an informative and helpful blog. If you think so, please share it with your social networks or pin any of the above images to Pinterest by clicking on the icons below.  Together we can spread lupus information and awareness.

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References

Jewett-Tennant, J. (2019). Coping with lupus. Retrieved from: https://www.verywellhealth.com/coping-with-lupus-2249931

Lindsey, H. (2018). Lupus: Everything you need to know about the disease, what causes it, and how to treat it. Retrieved from: https://www.everydayhealth.com/lupus/

Preventing a lupus flare. (n.d.). Retrieved from: https://www.webmd.com/lupus/preventing-lupus-flare#1

Ruperto, N., Hanrahan, L., Alarcón, G., Belmont, H., Brey, R., Brunetta, P., … Merrill, J. (2011). International consensus for a definition of disease flare in lupus. Lupus, 20(5), 453–462. https://doi.org/10.1177/0961203310388445

 

Author:  The Kaleidoscope Fighting Lupus Team (2020)

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