Living Well While Treating and Managing Lupus

Lupus is a lifelong autoimmune disease that can affect many aspects of health and well-being. Learning how to treat lupus and live your best life with this autoimmune disease takes a close partnership between you and your healthcare team. In addition to medical treatments, there is plenty that you can do to help keep symptoms under control, prevent lupus flare-ups and improve your quality of life.
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Treatments for Lupus

Medical treatments are the cornerstone of disease management plans for lupus. Because there is currently no cure for lupus, treatment plans focus on preventing symptom flares, managing symptoms when they occur, protecting internal organs from damage caused by lupus-related inflammation and preventing long-term complications such as heart and kidney problems.

Because lupus may manifest in different ways over time, your treatment plan may change in response. Your healthcare team will make updated recommendations that match your current symptoms, factor in the results of lab tests and other monitoring methods, and introduce new treatment options as they are developed.

Based on the parts of your body affected, different medications may be prescribed1:

  • Nonsteroidal anti-inflammatories to reduce chemicals in the blood that cause inflammation, which is responsible for muscle and joint stiffness and overall discomfort.
  • Anti-malarial drugs such as hydroxychloroquine, chloroquine and quinacrine, which help control lupus in several ways. These drugs reduce levels of antinuclear antibodies (ANAs), the proteins in blood that mistakenly attack healthy cells and tissues and produce lupus symptoms. Anti-malarial medications also help reduce lupus flare-ups and prevent lupus from affecting vital organs.
  • Methotrexate, mycophenolate mofetil and azathioprine that reduce immune system activity.
  • Corticosteroids to help reduce pain and inflammation and protect organs from damage.
  • Infusion therapy with biologic drugs such as belimumab (Benlysta) to target lupus antibodies2 or anafrolimab to interfere with interferon alpha, an inflammation-causing molecule
  • Cyclophosphamide or voclasporin to reduce activity in the kidneys.
Additional medications and treatments may be needed to address serious health problems related to lupus, including blood disorders such as anemia or leukopenia, problems with the brain and central nervous system, joint problems such as arthritis, and issues affecting internal organs, primarily the kidneys, heart and lungs.

Long-term Monitoring

Regular testing and monitoring is another essential element of ongoing medical management for lupus to assess disease activity, ensure that treatment options match your current needs, manage flares and prevent future complications. Every few months, your doctor may order tests such as:
  • Blood tests to check for signs of disease activity including levels of lupus antibodies. The AVISE® SLE Monitor is a quarterly lupus monitoring test to help you and your doctor proactively manage lupus. This test reveals changes in disease activity, identifies improvements due to therapy and alerts your doctor if vital organs—particularly the kidneys—may be affected.
  • Urinalysis to check for signs of kidney damage, such as high levels of protein or red blood cells in the urine.
  • Eye exams by an ophthalmologist to check if hydroxychloroquine has affected the eyes.
  • Screenings for diabetes, hypertension (high blood pressure), altered lipid profile (abnormal levels of fats in blood), osteoporosis (weakened bones) and kidney disease.

Managing Lupus Flare-ups

For many people with lupus, symptoms tend to come and go. These intermittent periods of greater lupus symptom activity are called “flares” or “flare-ups.”

While you may wonder how long does a lupus flare last, there is no definitive answer since it can vary in severity and duration. Ranging from mild to life-threatening and typically lasting from a few days to a few weeks, lupus flares can vary each time and differ for each patient. A mild lupus flare-up may involve a skin rash or fatigue, while a moderate one may come with arthritis, joint swelling or inflammation in the lining of the lungs or abdomen. A severe flare may involve symptoms that can damage organs, such as fluid buildup around the heart (pericardial effusion) or kidney inflammation that can lead to failure (lupus nephritis).

Lupus flares may be triggered by a variety of factors such as stress, exposure to sunlight, lack of rest, infection, injury or missed doses of lupus medication. Consistently following your lupus treatment plan—even when you feel well—is the best way to prevent flares. Stick to your medication schedule, take precautions, such as avoiding sun exposure, and see your healthcare team regularly.

Warning Signs to Watch For

Lupus flares are often preceded by warning signs, including3:
  • Dizziness
  • Fatigue
  • Mouth sores
  • Pain and swelling in joints
  • Persistent fever not due to infection
  • Severe headache
  • Skin rashes, particularly a butterfly-shaped rash over the cheeks

Healthy Lifestyle Habits

Maintaining a healthy lifestyle is one important approach to managing lupus symptoms. Here are some ways you can take good care of yourself:

Limit ultraviolet light (UV) exposure. Up to 88% of people with lupus say that they experience photosensitivity4 (increased sensitivity to UV rays, including sunlight and artificial light sources). Exposure to UV light can worsen lupus symptoms, particularly skin rashes, itching, redness and breakouts. UV light can also trigger other lupus symptom flares such as fatigue, fever and joint pain. Recent studies show that over time, inflammation triggered by UV exposure may even contribute to kidney damage.5 To avoid the effects of photosensitivity:

  • Stay out of the sun as much as possible.
  • Wear protective clothing outdoors (broad-brimmed hat, sunglasses and garments that cover the skin from head to toe).
  • Use a broad spectrum (UVA/UVB) sunscreen with a minimum SPF rating of 30, though SPF 70 or higher is better.
  • Consider switching to LED indoor lighting. Eliminate standard fluorescent, compact fluorescent (CFLs), halogen and incandescent light bulbs, which can emit significant amounts of UV rays. LED (Light Emitting Diode) lights produce much less UV radiation, making them a better choice for people with lupus.
  • Vitamin D. Also called calciferol, vitamin D is an essential nutrient that is produced when the skin is exposed to sunlight. Avoiding sun exposure due to photosensitivity may result in a vitamin D deficiency. Talk to your doctor about having your vitamin D levels tested and whether you should take a vitamin supplement.
  • Lipid levels. Lupus can cause hyperlipidemia (high levels of fats in the blood). Ask your doctor if a low-fat diet is appropriate for you.
  • Weight management. Lupus medications such as high doses of steroids may contribute to weight gain. A low-calorie diet balanced with physical activity can help keep weight in check.

Be aware that some medications can increase photosensitivity, including certain antibiotics, anti-inflammatory drugs and blood pressure medications. Ask your doctor or pharmacist if the medicines you are taking might impact photosensitivity.

Eat a balanced diet. Unfortunately, there is no special lupus diet to reduce symptoms or cure the disease. In general, following dietary guidelines that promote good overall health is the best approach for people with lupus. Eat a balanced diet that includes a variety of nutritious foods, like fresh fruits and vegetables, whole grains, moderate amounts of lean protein and limited amounts of alcohol and sugar. Download our Lupus Nutrition guide to help you  eat well and minimize lupus symptoms.

Depending on how lupus affects your health, specific dietary considerations may apply to you:

Manage stress. Life can be stressful, but the challenges of living with lupus can worsen stress, which in turn increases the risk of mental health issues such as depression and anxiety.6 While psychological distress alone may not be the cause of lupus, research shows that stressful events can trigger flare-ups or make symptoms worse for many people with lupus.7

Stress management techniques can help break this cycle. Regular exercise and eating a healthy diet go a long way toward improving mood. In addition, behavioral health approaches can help manage stressors related to lupus disease symptoms.

  • Acceptance and commitment therapy (ACT) teaches skills to help people accept negative thoughts, feelings and events without trying to change them. A recent research study found that ACT significantly reduced psychological symptoms including disappointment, distress and irrational fears in people with lupus.8
  • Cognitive behavioral therapy (CBT) focuses on changing negative thoughts associated with lupus. CBT can help people with lupus experience fewer psychological disorders related to their disease and manage stress more effectively.9
  • Mindfulness-based stress reduction (MBSR) is a therapy that combines meditation with yoga exercises. MBSR is shown to improve mental health outcomes, as well as reduce physical discomfort, in people with lupus. 10, 11

Download our Living With Lupus guide featuring helpful lifestyle tips to get you the support you need.

For more resources to help you live well with lupus and manage your healthcare journey, visit our patient resources page.
Patient Resources
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Last reviewed by an Exagen medical professional on 08/11/2022.

References:

  1. Bartels CM, Muller D. Systemic Lupus Erythematosus (SLE) Treatment & Management. Medscape. Reviewed June 16, 2022. https://emedicine.medscape.com/article/332244-treatment. Accessed July 22, 2022.
  2. Chiang H-Y, Guo Z-A, Wu T-W, Peng T-R. Efficacy and safety of belimumab therapy in systemic lupus erythematosus: A systematic review and meta-analysis. Lupus. 2022;31(6):666-673. doi:10.1177/09612033221090888. https://journals.sagepub.com/doi/full/10.1177/09612033221090888. Accessed July 22, 2022.
  3. Centers for Disease Control and Prevention. Managing Lupus. CDC.gov. Reviewed July 5, 2022. https://www.cdc.gov/lupus/basics/managing.htm. Accessed July 22, 2022.
  4. Foering K, Goreshi R, Klein R, Okawa J, Rose M, Cucchiara A, Werth VP. Prevalence of self-report photosensitivity in cutaneous lupus erythematosus. J Am Acad Dermatol. 2012; 66(2):220-8. doi:10.1016/j.jaad.2010.12.006. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193852/. Accessed July 22, 2022.
  5. Skopelja-Gardner S, Tai J, Sun X, Elkon K. Acute skin exposure to ultraviolet light triggers neutrophil-mediated kidney inflammation. Proceedings of the National Academy of Sciences (PNAS). 2021;118(3). https://doi.org/10.1073/pnas.2019097118. Accessed July 22, 2022.
  6. Zhang L, Fu T, Yin R, et al. Prevalence of depression and anxiety in systemic lupus erythematosus: A systematic review and meta-analysis. BMC Psychiatry. 2017;17(70). https://doi.org/10.1186/s12888-017-1234-1. Accessed July 22, 2022.
  7. Roussou E, Iacovou C, Weerakoon A, Ahmed K. Stress as a trigger of disease flares in SLE. Rheumatol Int. 2013;33(5):1367-1370. doi:10.1007/s00296-011-2292-1. https://pubmed.ncbi.nlm.nih.gov/22193224/. Accessed July 22, 2022.
  8. Sahebari M, Asghari Ebrahimabad MJ, Ahmadi Shoraketokanlo A, Aghamohammadian Sharbaf H, Khodashahi M. Efficacy of acceptance and commitment therapy in reducing disappointment, psychological distress, and psychasthenia among systemic lupus erythematosus (SLE) patients. Iran J Psychiatry. 2019;14(2):130-136. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6702277/. Accessed July 22, 2022.
  9. Navarrete-Navarrete N, Peralta-Ramírez MI, Sabio-Sánchez JM, et al. Efficacy of cognitive behavioural therapy for the treatment of chronic stress in patients with lupus erythematosus: A randomized controlled trial. Psychother Psychosom. 2010;79(2):107-115. doi:10.1159/000276370. https://pubmed.ncbi.nlm.nih.gov/20090397/. Accessed July 22, 2022.
  10. Taub R, Horesh D, Rubin N, et al. Mindfulness-based stress reduction for systemic lupus erythematosus: A mixed-methods pilot randomized controlled trial of an adapted protocol. J Clin Med. 2021;10(19):4450. doi:10.3390/jcm10194450. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8509215/. Accessed July 22, 2022.
  11. Khoo EL, Small R, Cheng W, et al. Comparative evaluation of group-based mindfulness-based stress reduction and cognitive behavioural therapy for the treatment and management of chronic pain: A systematic review and network meta-analysis. Evid Based Ment Health. 2019;22(1):26-35. doi:10.1136/ebmental-2018-300062. https://pubmed.ncbi.nlm.nih.gov/30705039/. Accessed July 22, 2022.