Living With a Lupus Flare-Up
Elena and Anna, both lupus warriors, discuss what a lupus flare is and tips for coping with a lupus flare-up.
Lupus flares, or short periods when the disease is active, is one of the hallmarks of lupus SLE. The disease itself is highly individualized, meaning each flare will have different markers for different people.
These may include less “serious” (albeit still life-altering) lupus symptoms such as extreme fatigue, skin rashes, muscle and joint pain, joint swelling, mouth ulcers, low-grade fevers, malaise, sore throat and generally feeling unwell.
A more serious lupus flare-up can mean needing to be hospitalized for long periods of time, as round-the-clock supervision may be required. During more life-threatening flares, lupus may move on from attacking your joints and skin to attacking vital organs.
What Is a Lupus Flare?
Flares can be mild, moderate or severe. There are many interpretations of how a lupus flare should be defined:
According to an international working group convened by the Lupus Foundation of America, “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.”
The Mayo Clinic states that “signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.”
What Is a Lupus Flare Like?
Clinical definitions aside, the word “flare” itself – “to burn with a sudden intensity” – is more aligned with what we feel as patients. Dealing with a lupus flare can be overwhelming and painful, both physically and mentally, which can cause stress that may increase the severity/prolong the duration of symptoms.
Signs and Symptoms of a Lupus Flare
Systemic lupus erythematosus is caused by inflammation, which results from the body attacking its tissues. Symptoms caused by an increase in this inflammation can affect our ability to do daily tasks, work and may result in hospitalization or prolonged illness.
If you pay close attention to your body, you will notice that the same things start to happen just before a lupus flare.
Lupus Canada lists the following symptoms as flare indicators:
- Persistent (continuing) fatigue which is out of proportion to what you consider your normal fatigue
- Persistent weakness
- Aching all over without any apparent reason
- Persistent fever
- Persistent loss of appetite
- Involuntary weight loss
- Excessive and persistent hair loss
- Recurrent (repeated) nosebleeds
- Sores on the roof of the mouth which burn when spicy foods are eaten
- Unexplained rash anywhere on the body
- Persistent hives
- Skin ulcers
- Recurrent pain in the joints
- Swelling of one or several joints
- Persistent joint stiffness upon awakening in the morning
- Chest pain which increases when breathing in
- Unusual shortness of breath
- Coughing up blood
- Persistent, unusual headache
- Persistent nausea and vomiting
- Recurrent or persistent pain in the abdomen
- Persistent and worsening swelling of the feet and legs
- Persistent swelling of the eyelids
- Blood in the urine or the stools
Being aware of these signs and addressing them early with your rheumatologist is key to reducing an oncoming flare.
Identifying Symptom Patterns
Keeping a symptom journal can help you determine the symptom patterns that lead up to a flare. You can also look back and ask yourself questions like:
- Was there a lot of stress happening in my life?
- Were there any days where I missed my medication?
- Have I started or stopped a medication recently?
- Did I eat anything different?
- Has the weather changed suddenly?
- Was I out in the sun or under fluorescent lighting?
- Was there anything different about the environments I was in?
- How much sleep did I get?
By being your own health detective, you give yourself the opportunity to take preventative action and to inform both your doctor and your loved ones, who can also help identify factors that you may not be aware of.