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Lupus (also known as systemic lupus erythematosus, or SLE) is an autoimmune disease that causes inflammation across the body. The symptoms of lupus come and go during periods of flare-ups (or flares) and remission.
The risk of experiencing a lupus flare-up increases when a person tapers or stops their lupus treatments. However, flare-ups are a normal part of living with lupus, even when your condition is well-controlled.
Lupus flares may be unpredictable. However, over time, many people living with lupus learn what will trigger or worsen their symptoms. Knowing your triggers can help you prevent flares or identify them before they happen. Different ways of treating lupus flares can also help you improve your symptoms. By working with your rheumatologist, you can find the best ways to manage your symptoms and reduce the impact that lupus flare-ups have on your quality of life.
Lupus flares can have many symptoms. Most people experience a combination of increased pain (both in the joints and muscles), rashes (including the lupus rash, a butterfly-shaped mark on the face), headaches, stomachaches, fevers, fatigue, or dizziness. Some people may also have swollen legs or sores (ulcers) in their nose and mouth.
MyLupusTeam members have described lupus flares in a number of ways. “Flares for me begin with fever, body aches, and severe fatigue,” one member described. Another added, “Ugh, lupus flares stink! I have joint pain, burning mouth, and nose sores.”
Emotional, physical, or environmental factors may cause or signal lupus flare-ups. These factors are often referred to as “triggers.”
Each person’s flare triggers are unique. It can take time for people with lupus to fully understand what triggers their flare-ups. “At first, identifying my flare triggers was difficult. I still have some difficulty,” one member shared. Another member wrote, “I believe my pain is the most severe when I have physical stress like surgery or injury. It took me a number of years to make that connection.”
Noticing patterns over time is important for identifying triggers. “You will see what doesn’t work for you,” a member advised someone who was new to MyLupusTeam. “Lupus can be so different for each person. Take it slow and get to know the new you.”
For those who are still trying to recognize their triggers, it can be helpful to understand common triggers for others with lupus. Stress, food, hormonal changes, weather, or sun exposure top the list of disease flare triggers on MyLupusTeam.
Stress — whether it’s physical or mental — is one of the most common and challenging flare triggers for members of MyLupusTeam.
Sometimes, this stress comes from heightened emotions. “I’ve spent the afternoon sobbing, and I can feel a flare coming on from the stress,” one member shared. Other times, it’s caused by external factors like work or everyday life. As another member wrote, “I started a new job this week, and stress from the learning curve has triggered a flare.”
Anxiety about stress itself can be a problem for some members, leading to a negative-feedback loop. “I know stress causes flare-ups, but then I stress about not stressing,” one member commented.
No matter the cause, it’s important to identify strategies to relieve stress. Learn more about effective ways MyLupusTeam members manage stress.
About 90 percent of people living with lupus are women, and most develop the condition during their reproductive years. Hormonal changes related to menstruation, menopause, or pregnancy can be major flare triggers. Some members have difficulty making a definitive connection between hormonal changes and lupus flares. Members have asked, “Can my period cause a flare-up?” or, “Does anyone get flares around their period?”
The answer for some members is a resounding “yes.” As one member commented, “I flare every month with my cycle!” Another added, “I experience it most months, though in varying degrees. It’s most intense for me the week before.”
Flares can become more severe during menopause. “Hormone shifts seem to trigger flares,” one member explained. “It got really crazy when I started going through menopause.”
Weather and sun exposure can trigger flares for some members. “The weather is changing. I find this has a major impact on me,” one member wrote.
Exposure to light — both the sun and artificial light — can trigger lupus symptoms because lupus can cause photosensitivity (sensitivity to ultraviolet rays). As one member shared, “I’ve had the absolute worst flare of my life this week. This whole flare was triggered by sun exposure. That is so depressing to me.”
Flares triggered by weather or sun exposure can be especially frustrating if the best solution is to avoid these triggers entirely. As one member shared, “To me, our hot Texas summers are the worst. I had to stop showing real estate properties because of the heat and extremely painful flares.”
Some members are able to manage weather-induced flares with medication: “I had a slight flare a few weeks ago when the weather first changed. I am learning some of my flare triggers, which allows me to take medicine to try to head off the flares.”
However, some medications may actually cause photosensitivity as a side effect. Whenever you are prescribed a new medicine, be sure to determine whether it can affect sun sensitivity. Talk to your doctor or pharmacist to make sure the medication is right for you, especially if your lupus is triggered by the sun.
Many factors can cause lupus symptoms to flare. MyLupusTeam members have also identified the following triggers:
The best way to prevent lupus flares is to avoid known triggers. However, this is easier with some triggers than with others. It might be simpler to stay out of the sun and wear high-SPF sunscreen, for example, than it is to avoid hormonal changes or emotional stress brought on by situations outside of your control.
Finding an effective treatment for lupus is another way to prevent at least some flare-ups. When your immune system is better controlled, flares are less likely. Your rheumatology team may prescribe antimalarial drugs like hydroxychloroquine (Plaquenil), corticosteroids like prednisone, nonsteroidal anti-inflammatory drugs, immunosuppressants, or biologics to help keep your lupus under control. Some people find that supplements help, but research does not yet support the benefit of supplements for lupus.
Most of the time, controlling lupus and preventing flares comes down to having a plan. Work with your rheumatologist to create a treatment plan that works best for you. Most lupus plans include taking medication, getting plenty of physical and emotional rest, eating a balanced and healthy diet, getting moderate exercise, avoiding known triggers, treating any infections, and managing stress.
No matter how well you know your triggers, you’ll likely find that your lupus symptoms come and go. Sometimes, you may not even know what triggered a flare.
Most people manage their lupus flares at home. This most often involves resting, avoiding current stressors, or finding ways to deal with the stress that comes into your life.
If you have repeated flares or a flare that is not getting better, talk to your health care team. These flare symptoms may indicate that your lupus is not under control. It might be time to change your lupus treatment plan.
Your doctor might adjust your medication, work with you to help secure medical leave from your job, or help you make lifestyle changes that might help. There are many treatments and therapies for lupus. Although it may take some time, you and your doctor will figure out what works for you.
Are you or a loved one living with lupus? Consider joining MyLupusTeam today. On this online social network for people living with lupus, you can share your story with lupus, offer and receive support, ask and answer questions, and more. Before long, you will have a team of people from around the world who understand life with lupus.
Are you trying to figure out what triggers your lupus flare-ups? Have you found ways to prevent or manage flares? Share your questions, thoughts, or tips in the comments below or by posting on your Activities page.
Diane M. Horowitz, M.D. is an internal medicine and rheumatology specialist. Review provided by VeriMed Healthcare Network. Learn more about her here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.
