Do you know? Open the door┋ Is systemic lupus erythematosus really that scary? Come and learn about it briefly

Written by: Gu Yanqin, resident physician, Department of Rheumatology and Immunology, First Affiliated Hospital of Xinjiang Medical University

Reviewer: Luo Li, Chairman of the Clinical Immunology Branch of Xinjiang Immunology Society; Chairman of the Osteoporosis Committee of Xinjiang Medical Association; Vice President of Xinjiang Uygur Autonomous Region Immunology Society; Director, Professor, and Chief Physician of the Department of Rheumatology and Immunology, the First Affiliated Hospital of Xinjiang Medical University

Recently, a woman named Shabai chose to go to Switzerland for euthanasia after fighting systemic lupus erythematosus (SLE) and chronic kidney disease for 20 years. Her story has sparked heated discussions on the Internet. Many patients and non-medical practitioners are often afraid of the word "wolf" because they lack knowledge about SLE. In the past, SLE was also considered "immortal cancer." Is SLE really that scary? Let's take a brief look at it.

How does SLE occur?

The onset of SLE is related to abnormal activation of the immune system. The human immune system usually maintains a state of balance. Our immune system has a self-stabilizing function, which mainly removes aging and damaged cells in the body, but can identify and not attack its own normal tissues. Once this balance is broken, the immune system will not be able to distinguish between "friend and foe", causing this army in the body to start attacking itself, thereby promoting the occurrence of autoimmune diseases such as SLE.

How to avoid SLE triggers?

SLE is an autoimmune disease caused by multiple factors such as genetics, immunity and environment. For SLE patients, infection is like dynamite, which may detonate the body's immune function at any time once ignited. Therefore, SLE patients should improve their body resistance by ensuring adequate rest, an optimistic and happy attitude, scientific exercise, and balanced nutrition. Frequent hand washing and ventilation can also reduce the risk of infection. In addition, ultraviolet radiation can also cause SLE to relapse or worsen, especially for patients with skin damage and photosensitivity. Therefore, SLE patients should try to avoid sunbathing and surfing, and choose morning, evening or night for outdoor activities. When the sun is sufficient, you can take physical sun protection measures such as wearing a hat, holding an umbrella, wearing a mask, wearing sunglasses, wearing sun-protective clothing, and applying sunscreen when going out. In addition, SLE patients are not recommended to dye their hair, get tattoos, tattoo eyebrows, or use irritating cosmetics.

Does SLE affect fertility?

SLE is more common in women of childbearing age, and most women in this age group have the desire to get pregnant and have children. Pregnancy can cause the patient's condition to fluctuate, and in turn, the activity of the disease increases the risk of adverse pregnancy outcomes such as miscarriage, intrauterine fetal growth restriction, and preeclampsia. However, with the development of rheumatology, obstetrics, neonatology, and assisted reproduction in recent years, SLE infertility has become history. There are two reasons why SLE affects fertility. First, patients with severe SLE need to use drugs such as cyclophosphamide and high-dose hormones, which may cause premature amenorrhea due to the risk of reproductive toxicity; second, SLE patients have positive serum antiphospholipid antibodies or secondary antiphospholipid syndrome, leading to infertility and recurrent miscarriage. You can follow the doctor's advice to increase the dose of prednisone during or after pregnancy, or add low molecular weight heparin, aspirin, cyclosporine, tacrolimus, hydroxychloroquine sulfate and other drugs to stabilize the condition. If you have a desire to have children, you must consult a professional doctor in advance for risk assessment and medication adjustment.

It is recommended that patients who have not used immunosuppressants such as methotrexate, cyclophosphamide, leflunomide, mycophenolate mofetil, and tripterygium wilfordii for at least 6 months, whose SLE condition has been stable for more than half a year, whose prednisone dosage is less than 15 mg/d, who have no damage to important organs, and whose 24-hour urine protein is less than 0.5 g, can consider pregnancy. Scientific preparation for pregnancy can also achieve good pregnancy outcomes for SLE patients.

Is SLE contagious?

SLE is an autoimmune disease that affects almost all organs of the body. Patients will have multiple clinical manifestations such as severe rash, oral ulcers, hair loss, fever, cough, etc. It is not a disease caused by various pathogens such as bacteria, viruses, fungi, etc., and it will not be transmitted from person to person. Therefore, there is no need to be afraid of and alienate SLE patients.

What are the typical clinical manifestations of SLE?

The clinical manifestations of SLE are highly heterogeneous, with various systemic manifestations, different course and severity of the disease, and different clinical manifestations of different patients. The same patient will have different clinical manifestations at different stages of the disease. The systems that are prone to involvement include: skin and mucosal damage (such as butterfly erythema on the cheek, reticular plaque, Raynaud's phenomenon, vasculitis, photosensitivity, hair loss, oral mucosal ulcers, etc.), joint swelling and pain, fever, hematopoiesis (such as anemia, leukopenia, thrombocytopenia), kidney damage (such as hematuria, proteinuria, oliguria, increased creatinine), serositis (pleural effusion, pericardial effusion, etc.), nervous system damage (such as headache, epilepsy, cognitive impairment, cerebral infarction), digestive system symptoms (such as abdominal pain, diarrhea, abdominal distension), thrombosis, and other clinical manifestations. Because the clinical symptoms of SLE are complex and diverse, most patients cannot correctly choose the department to visit, which causes delays in diagnosis to a certain extent. Therefore, if women of childbearing age have symptoms of more than two systems, they should first consider consulting the rheumatology and immunology department for diagnosis and treatment.

What items do SLE patients need to have regular checkups?

Anti-dsDNA antibodies are specific for the diagnosis of SLE. At the same time, the titer of anti-dsDNA antibodies is related to disease activity, especially lupus nephritis. The increase in antibody titer may occur simultaneously with disease activity or even precede disease activity, and needs to be closely monitored. Immune complexes activate the classical complement pathway, leading to the consumption of related complement components, so a decrease in complement C3.C4 and total complement activity CH50 is an important sign of SLE disease activity. Of course, it is also necessary to regularly review routine examinations such as blood routine, liver function, kidney function, urine routine, erythrocyte sedimentation rate, C-reactive protein, immunoglobulin, as well as examinations of important organs such as echocardiography, high-resolution lung CT, and cranial MRI. However, the specific examination for each SLE patient should be determined according to the condition.

What are the treatments for SLE?

Commonly used drugs for the treatment of SLE include glucocorticoids, antimalarial drugs, immunosuppressants, and biological agents. When necessary, plasma exchange and intravenous injection of high-dose immunoglobulin can be used, but their efficacy, price, and adverse reactions vary greatly. In addition, many patients around the world have received mesenchymal stem cell therapy and CAR-T therapy, but there is currently a lack of strong evidence to support their use as routine treatments for the disease.

Can medication be discontinued for SLE treatment?

If SLE is not treated in time and the disease remains active, the affected organs may suffer irreversible damage. Although SLE cannot be cured at present, it can achieve long-term remission through reasonable treatment. After the condition improves, the hormone can be reduced or even stopped, and then the dose of immunosuppressants can be gradually reduced. During the medication reduction period, the condition must be closely monitored, and if there are changes in the condition, the medication needs to be adjusted in time. However, discontinuation of hormones does not mean that the disease is cured. Long-term follow-up observation is necessary, and appropriate treatment should be given in time if the disease is active. The long-term goal of SLE treatment is to prevent and reduce relapses, delay the progression of organ damage, protect the functions of important organs, and at the same time minimize adverse drug reactions to achieve long-term and sustained remission of the disease, reduce mortality, and improve the quality of life of patients.

Can SLE be treated with traditional Chinese medicine?

As far as SLE is concerned, TCM treatment can adopt syndrome differentiation and treatment, stage-based treatment, Chinese patent medicine treatment and Chinese medicine extract treatment. The combination of Chinese and Western medicine can be selected according to the specific circumstances of the disease. However, it should be noted that it is recommended to go to a regular hospital for treatment and use Chinese medicine in a standardized manner under the guidance of a professional Chinese medicine doctor, avoid the arbitrary use of folk remedies, and pay attention to monitoring adverse drug reactions and incompatibility contraindications.

What should SLE patients pay attention to in their diet?

Due to systemic inflammatory reactions, long-term use of glucocorticoids can easily cause weight gain, lipid metabolism disorders, atherosclerosis, osteoporosis and increased risk of infection. The overall dietary principles of SLE should follow the principles of low fat, low sugar, low salt, less oil, moderate high-quality protein, and a combination of coarse and fine staple foods. Eating on time and eating 70% to 80% full is conducive to controlling blood sugar stability, avoiding rapid weight gain, avoiding abnormal increases in blood pressure and blood lipids, and reducing the risk of cardiovascular disease. In addition, SLE patients should reduce foods containing photosensitive ingredients such as celery, coriander, alfalfa, leeks, fungus, and mushrooms. If they are eaten, they need to take sun protection measures. SLE patients can also appropriately supplement fish oil, vitamins, dietary fiber, trace elements, polyphenols and other nutritional health products to prevent hormone side effects and immune regulation.

Content sources: Xinjiang Uygur Autonomous Region Science and Technology Association, Healthy China, unsplash

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