Systemic Lupus Erythematosus: Symptoms and Preventing Flare-Ups

A chronic autoimmune disease, systemic lupus erythematosus (SLE) causes inflammation in the joints, skin, brain, lungs, kidneys, and blood vessels. Over five million people worldwide suffer from this disease, and it usually affects women in their 20s to 30s. In Malaysia, data shows that the Chinese ethnic groups have the highest SLE rate.

SLE can have debilitating effects. Data shows that 65% of SLE patients have chronic pain, while 76% reports chronic fatigue. 89% of people with lupus also have problems working due to their disease. While SLE can disrupt daily life, proper treatment and preventative care can allow patients to improve their quality of life.

How Does Systemic Lupus Erythematosus (SLE) Show Itself?

The signs and symptoms of SLE can present in different ways. They can also vary from mild to life-threatening. Some patients may experience moderate symptoms that subside after a while. For others, the symptoms may be severe and persistent. As SLE can have an effect on any organ in the body, the presentation of this disease also depends on the organs affected.

Common symptoms include:  

• Redness and scaling of the cheeks and nose (butterfly rash) 
• Photosensitivity – redness of the body parts exposed to sunlight 

• Oral ulcers 
• Hair loss  
• Hives  
• Joints and muscle pain
• Fatigue, weakness and lethargy  

• Bubbly urine and blood in the urine (may point to kidney disease) 
• Jaundice and itchiness points (possibility of liver diseases) 
• Fever and easy bruising (indicative of bone marrow issues) 
• Seizures and change in behaviour (may be a sign of brain disease) 
• Chest pain and difficulty in breathing (can indicate lung and heart problems) 

To date, the exact causes of SLE are unknown. However, environmental, genetic, and hormonal factors play a role in increasing the risk of SLE. Due to the non-specific nature of SLE’s signs and symptoms, diagnosing this disease can be challenging. Therefore, a combination of clinical diagnosis and bloodwork is essential. For example, anti-nuclear antibody (ANA) and anti-double-stranded DNA antibody (anti-dsDNA) are usually done to get more precise results.

Managing SLE with Medication

There is no cure for SLE, but patients can still manage the symptoms with medicine. As SLE is an autoimmune disease, medication works by suppressing the immune system to prevent it from attacking the body’s own organs and tissues. Doctors usually prescribe immunosuppressive drugs such as corticosteroids, hydroxychloroquine, and azathioprine to control the disease. In 2011, the FDA approved the use of belimumab, one of the first new medicines for SLE in more than 50 years.

SLE patients would need to take medications on a long-term basis to prevent complications, which can severely limit their physical and mental faculties and negatively impact the quality of their lives. Unfortunately, immunosuppressive medications are known to cause serious side effects on foetuses. Therefore, pregnant women or women who want to conceive must cease their usage of the drug before and during pregnancy.

Improving SLE Symptoms with TCM

Apart from Western medicine, a 2016 study showed that Traditional Chinese Medicine (TCM) can be utilised as an integral element for effectively treating SLE and improving survival rates amongst SLE patients. In this study, approximately 40% of SLE patients who used TCM for SLE treatment exhibited a significantly decreased risk of death compared to those who did not use TCM. This study also found several TCM formulas to be effective TCM treatment agents for SLE, including Zhi Bo Di Huang Wan, Jia Wei Xiao Yao San, Liu Wei Di Huang Wan, Gan Lu Yin, and Yin Qiao San. 

In another study, scientists have found that systemic treatment of SLE with TCM and Western Medicine is an effective comprehensive treatment of this disease, which helped to improve symptoms such as fever, erythema, and joint pain during treatment and reduce adverse reactions. “In addition, treatments based on syndrome differentiation of TCM can offer advantages in different stages during the treatment of long-term SLE, to achieve the sustainability and safety of treatment,” the study reports.

Living with SLE

It’s not easy living with SLE, especially with symptoms such as persistent pain and fatigue that can cause problems in your daily life. However, lifestyle modifications can help ease SLE symptoms and promote better well-being in SLE patients.

A well-balanced diet comprising essential food groups is important. Moderate exercise can also help but stick to low impact workouts and only do them when you feel up to it. Sunlight (UV rays), cigarette smoke, and stress can aggravate the symptoms, so it may be a good idea to stay in when it’s sunny, quit smoking, and learn how to manage stress effectively.

While no known diet can prevent or improve SLE symptoms, professionals suggest avoiding a few types of food such as alfalfa, mung beans, and echinacea, which can worsen the disease. As you need to avoid the sun, your doctor may also advise you to supplement your diet with Vitamin D. In addition, you can try Antrodia Cinnamomea Mycelia powder to strengthen the body, restore energy, and alleviate fatigue. 

It’s also important to get enough sleep and schedule regular breaks when you are at work. SLE patients often feel fatigued, so taking time to rest and recharge is vital. Moreover, overworking and stress can trigger a lupus flare-up. If you notice a symptom flaring up, contact your doctor. Also, refrain from discontinuing your lupus medication or reducing your doses without consulting a doctor.

While systemic lupus erythematosus (SLE) is a lifelong disease, living a healthy and normal life is still possible. Begin by understanding the disease and getting professional medical advice so that you are better equipped to manage and cope with your symptoms. If you are considering using TCM as part of your treatment, schedule an appointment with a TCM physician for a proper diagnosis. 

This is an adaptation of an article, “系统性红斑狼疮（SLE）”, which first appeared on Health 123 website.