If you have been living with lupus, you are most likely familiar with the following scenario: You start feeling worse than normal, perhaps with more aches or pains, increased fever, or sudden fatigue and you wonder, “Am I getting sick or is this the start of a flare up?” “And what can I do about it?”
Being in tune with your body, understanding your lupus triggers, tracking your symptoms and asking your physician about advanced lupus activity lab testing can help you understand how to take better control of your flares (yes, there is actually a test that can give insight into flare activity! Learn more below).
Lupus flares happen.
Experiencing flare ups is a common occurrence when you are dealing with lupus, and flares are often (but not always) characterized by a worsening of symptoms. Flare ups are typically triggered by something, and over time you will learn what your triggers are. I was able to notice my triggers more clearly thanks to years of journaling. Over time, I saw that more than ten minutes in the sun, stress, crying, getting my period, or getting an infection were contributing factors for a flare up to begin in my body. Once I noticed these patterns, I was able to take certain steps to limit these occurrences in my life.
Stress is one of the most common triggers of flare ups, and when I say stress I mean both bad stress and good stress (known as eustress). Someone experiencing a death in the family or a divorce, or even someone planning a whirlwind wedding is experiencing stress, and if they have lupus, that stress may be enough to cause an increase in their symptoms. Other common flare up triggers might include surgery, pregnancy, exhaustion, viruses and colds, injuries, or being exposed to UV rays (both sunlight and fluorescents).
When a flare up does occur, some people will notice certain symptoms returning (that may have been absent for a while), while others may notice an increase in their current symptoms. In some cases, however, a flare up could occur without someone experiencing any symptoms right away.
Top 3 Most Common Lupus Flare Symptoms
Some of the most common symptoms experienced during lupus flares include:
Fatigue – Most people living with lupus will experience some level of fatigue on a regular basis. I’ll use myself as an example of a “regular” day and then a day at the beginning of a flare. On a scale of one to ten, my typical fatigue runs around level four/five. I know I will have a few good hours of energy in the morning and then will require a nap to get through the rest of the day. I also don’t have a lot of stamina. For instance, thirty minutes of yoga will wipe me out for days whereas before I was diagnosed, I could easily make it through an hour and a half class without missing a beat.
Now, when a flare begins, I suddenly begin having crushing fatigue. My fatigue level will jump to an eight or nine and I will typically have to go back to sleep after an hour of being awake. To be completely honest, my fatigue can become so severe during a flare that I can have difficulty getting downstairs to make food,or having enough energy to get through a shower. For me, fatigue is one of my prime symptoms that a flare up is beginning to occur, along with fever, which we will discuss next.
Fevers – Having a low-grade fever is also something a lupus patient typically deals with. I’ve spoken with many people over the years who notice their body temperature always runs higher than normal…just enough to make you feel not so great. But personally, I notice a higher fever (and a fever that just doesn’t go away) when a flare up begins. I know this is my body’s way of telling me there is inflammation going on and that I need to let my body rest.
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Pain – Unfortunately, a lot of us living with lupus already deal with pain on a daily basis to some extent, but when a flare hits, the pain intensifies. We may also notice that our maintenance dose of medication isn’t working to combat the pain or that we are beginning to take increased amounts of medication to try to lessen the pain.
Other flare up symptoms can include getting a rash or breaking out in mouth or nose sores. If you are suddenly experiencing any of these symptoms or your current symptoms have gotten worse, it is time to speak to your doctor. By reviewing your reported symptoms and combining them with physical observations and blood test markers, a physician can determine if you are indeed in a lupus flare up. At this point, your doctor may recommend an increase in medication or the addition of new medication.
But what happens if you are in a flare and do not know?
This can be dangerous because there is inflammation occurring in the body and this can lead to damage over time. Because of this, it is important to see your doctor regularly and stay on top of having your blood work completed.
What can you do to proactivity manage your lupus flares?
Luckily, whether you are experiencing an increase of symptoms or not, there is a newer blood test specifically made for lupus patients that can determine if there is an increase in your disease activity.
The AVISE SLE Monitor test, created by Exagen, tests for specialized lupus biomarkers including those that are not found in traditional blood tests. This monitoring test can help your physician determine what is happening below the surface and may help you detect flares or avoid a flare altogether. The test will look for unique lupus biomarkers, in addition to examining the patient’s anti-dsDNA levels and complement levels. Complement blood levels, known as C3 and C4, are proteins in the blood. When these proteins are low, it could indicate an increase in lupus disease activity.
So where can you get the AVISE SLE Monitor Test?
Whether you feel like you are experiencing an increase in symptoms or just want to have your lupus disease activity properly monitored, getting the AVISE SLE Monitor test is easy. You can download a letter here and bring it to your next appointment. From there, your doctor will order the test, and once the blood is sent to Exagen, your test results will be sent to your doctor within 5 days!
You can learn more about the AVISE SLE Monitor Test here.
Lupus flare ups can happen. Track yours with traditional journaling or by using a mobile app, and be sure to reach out to your doctor when you are experiencing an increase in symptoms or to be properly monitored on a regular basis.
Having better control over our lupus flares can help increase our quality of life and let us get back to the things that are important to us!
The ONLY way I can “get hold” of a Lupus Flare when it seems to be out of control – is a trip to my PCP or to Urgent Care. They give me a shot of corticosterioids, then 7 to 10 days of the “step down” prednisone – (where your take a higher does 3 days and then taper down every three days”. My symptoms are many that you mentioned and the one symptom that send some running to the doctor is a “Lupus Migraine”. I’ve had “migraines” since the age of 17 years old. Bad ones, that even cost me in losing jobs due to having to not be able to work sometimes for days. I went through every kind of doctor, treatment etc there was. But, when I was diagnosed with Lupus, I began to have a different type of migraine. I call t a Lupus Migraine, and the ONLY THING that will get them under control is the prednisone both orally and an injection at first. It takes that “inflammatory” process down although it may take 24 hours or a bit more to kick in, that is the only thing that will help with all symptoms; especially that type of Migraine.
Yes, I agree. I was lucky to find a rheumy years ago that at the first sign of a flare gives me 80mg of depomedrol in a shot and within 2 to 3 days it stops the flare from progressing. But I have to get it quickly as soon as symptoms start. I’ve seen other doctors though who won’t do this! Which is crazy to me. If something has been shown to work in a patient’s body, even though it isn’t a textbook treatment, why would you deny it to a patient!!?? I am so glad you have had good luck at an urgent care!!