posted in Flares In Lupus on August 20, 2024 by
Most people with systemic lupus erythematosus (SLE) will experience a lupus flare. Many have multiple flares. In this article, I describe what lupus flares are. However, most importantly, I talk about how to prevent them and what to do about them when they occur.
In brief terms, a lupus flare is either:
An example of the first type would be if someone has mild, continuous painless ulcers on the roof of the mouth but then develops more numerous, painful sores, this would be a lupus flare.
The second would be if someone is perfectly fine one day and then develops a fever, fatigue, and joint pains the next.
An example of the third would be if the person with painless lupus mouth sores in the first example develops a lot of protein in their urine, which they have never had before, and is diagnosed with lupus nephritis.
It is important to see your rheumatologist during any new type or unusual lupus flare. My patients know to contact my medical assistant or send a message on the patient portal to get in to see me or one of my associates ASAP (usually within 24 hours). You will be asked questions about possible lupus symptoms like mouth sores, pleuritic chest pain, sun exposure, rash, and joint pains.
On physical examination, we look for active lupus like painless ulcers on the roof of the mouth, hair loss, active cutaneous lupus, and inflammatory arthritis. We use an ultrasound machine in our exam rooms to look for joint inflammation. We consider this as an extension of our physical examination.
In addition to a person’s description of how they are feeling, lab tests help diagnose and determine the severity of a lupus flare. To return to the example of the patient with mouth sores: it would be important to check their lupus labs (such as a urine sample and blood work) to make sure something more serious is not going on with any internal organs, such as the kidneys, liver, and/or blood counts.
Some labs help to assess whether the lupus immune system is more active. These tests can be very helpful, especially if there is the possibility of a non-lupus problem occurring that should be treated differently than a lupus flare. An example would be someone who has SLE complicated by lung inflammation and scarring (interstitial lung disease, ILD) who then develops a fever, cough, and shortness of breath. If this is an infection, like pneumonia, the proper treatment is an antibiotic. A lupus flare of the person’s preexisting ILD would be treated with immunosuppressants, which could make pneumonia worse.
Tests that can identify increased lupus immune system activity, and that are less likely to occur from non-lupus problems, include:
Many tests (like the blood tests CBC, liver enzymes, kidney function, and urine protein levels) are measured in all patients. However, other tests are targeted at specific problems that could potentially occur in a patient. For example, an ultrasound exam of the joints can help identify active inflammatory arthritis in someone with joint pain. A cardiac MRI can look for active inflammation in the heart muscle in someone who may have inflammation of the heart muscle (lupus myocarditis). An ECG and echocardiogram can look for pericarditis.
Preparing for flares and knowing what to do during a flare are important. Flares can potentially cause permanent damage to affected organs. For example, an arthritis flare could cause joint damage. Any flare can potentially cause inflammation and damage to blood vessels, increasing the risk of heart attacks and strokes.
Download and print out “Your Flare Plan,” which I developed for the Lupus Foundation of America at www.lupus.org/FlarePlan
Fill out as much of the form as you can. Then bring the form with you to your rheumatology visit and ask for help answering questions, including what you can do at home during flares.
For example, if you get painful mouth sores, having some prescription-strength dental steroid paste on hand can help. Your doctor may give you a short course of steroids (such as a methylprednisolone Dose Pak) to keep handy for flares.
It may be better to get a steroid shot in the buttock as demonstrated by the FLOAT study (flares in lupus: outcome assessment trial) from the Johns Hopkins Lupus Center in Baltimore, Maryland). This can be a faster and potentially safer way to help flares. You should find out if this is a good option for you and how to arrange to have it done quickly. My patients know they can call my medical assistant and come in immediately during flares to get this cortisone injection. The FLOAT study used a type of cortisone called triamcinolone. In our office, we use 40 mg DepoMedrol plus 4 mg dexamethasone instead because triamcinolone can create fat atrophy, causing a dimple to form at the injection site.
Moderate to severe flares should be dealt with directly by your doctor, so it is vital to learn what types of flares should be seen by your doctor.
Identifying the causes (triggers) of lupus flares is important. Learning and abiding by my “Lupus Secrets” is one of the best ways to avoid these. Potential triggers include:
Some triggers, like stress, can be difficult to prevent. Although avoiding stress can be difficult (increased pressure at work, for example), chapter 38 of “The Lupus Encyclopedia” lists practical ways to reduce the ill effects of stress. You can at least teach your mind and body how to respond more healthily to stress (such as practicing mindfulness every day, exercising regularly, and getting adequate sleep).
Menstrual cycles, infections, pollution exposure, and weather changes have been shown to influence lupus flares. These are examples of triggers over which you have less control. However, keeping up with all vaccinations (chapter 22) and reducing exposure to pollution by keeping a HEPA filter in the home and not going outside on poor air quality days can help.
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Read more in The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
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Thanks for the helpful information, Dr. T! I just wanted to share that I have been diagnosed 33 years ago when I was 15. I identified my flare triggers and stayed away from them as much as I can. So far I am doing well without organ involvements. I did have proteinuria at the beginning of my diagnosis but it is well controlled. Wish everyone here well!
Janie: Whenever I hear this, I always wonder if my patient could have thrush (candidiasis) as the cause due to decreased saliva formation. Our patients often do not get the white patches of thrush, but instead get sore tongue and mouth with some increased redness (erythematous atrophic candidiasis). I usually give a trial of cevimeline (to increased saliva flow) and clotrimazole troches (anti-fungal). Just a thought. Feel free to show this to your docs and ask what they think. Medication induced mucositis (like from methotrexate) is another common cause.
I love this article. I wonder if all Rheumatologist are aware of the tests for flares that you listed. I wish more doctors were as thorough as you.
The first commentor mentioned that their proteinuria was well controlled…how? I’m very curious as to how we can get that lupus symptoms under control
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