"Lupus" diagnosis and treatment has a "blue book"

When systemic lupus erythematosus is mentioned, people often smell discolored. Is systemic lupus erythematosus really so terrible? What is the current state of diagnosis and treatment in China? What are the new developments?

How terrible is lupus?

Professor Zeng Xiaofeng, director of the National Clinical Research Center for Skin and Immune Diseases and director of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, introduced that systemic lupus erythematosus (SLE) is a systemic autoimmune disease that cannot be cured at present. It is estimated that there are currently about 1 million SLE patients in China.

How to understand "systematic"? Zeng Xiaofeng explained that systemic lupus erythematosus is a systemic disease that often leads to damage to organs, especially the kidneys and nervous system, skin, blood system, respiratory system, and almost all systems may be affected.

What symptoms do I need to screen for for is systemic lupus erythematosus? "Because the clinical manifestations of systemic lupus erythematosus are diverse, systemic lupus erythematosus can cause many symptoms, and it can be said that any symptom may be possible. As long as it is a problem that cannot be explained by other diseases, you can go to the screening. Zeng Xiaofeng pointed out that systemic lupus erythematosus belongs to the category of rheumatism, if the patient has joint swelling and pain, rash, unexplained fever, white blood cells, thrombocytopenia, etc., should go to the rheumatology and immunology department to screen whether it is systemic lupus erythematosus.

Which populations are at high risk of systemic lupus erythematosus?

Professor Li Mengtao, director of the Office of the National Clinical Research Center for Skin and Immune Diseases and deputy director of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, introduced that patients with systemic lupus erythematosus are mainly concentrated in women of childbearing age, and the ratio of male and female patients is about 1:12. The average age of onset for adult patients is around 30 years old, and this is when they play an important role in the family and society, but there are also children who become ill at a few years old, "Helping them achieve '60 years of happiness' is the goal of our unremitting efforts." ”

"As of now, the pathogenesis of systemic lupus erythematosus has not been fully elucidated." Professor Tian Xinping, chief physician of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, introduced that it is currently more commonly accepted that the complex interaction between genes, environmental factors and the immune system leads to the body's immune dysfunction and impaired immune tolerance.

To date, systemic lupus erythematosus is still an incurable lifelong disease, accompanied by lifelong companionship once it is suffered, and the disease is prone to recurrence, recurrence and remission, which brings great mental and economic burden to the patient and his family.

What pits do patients need to be wary of?

Zeng Xiaofeng pointed out that at present, the 10-year survival rate of SLE patients in China has risen to 89%, which is comparable to the level of international developed countries. However, as the course of the disease continues, almost all patients with SLE have varying degrees of organ involvement. Irreversible damage to organ involvement gradually accumulates over the course of disease, eventually causing multiple organ failure and death.

"At present, some patients have some misunderstandings, one is to avoid medical treatment, and the other is to face such a disease that cannot be cured at present, eager to find a home remedy, and the result is to delay diagnosis and treatment." Tian Xinping pointed out that in the clinic, it was found that many patients have poor awareness and compliance with the standardized treatment of diseases, self-stop drugs, the use of home remedies and other situations are not uncommon, and some patients rely too much on hormones, worried that hormone reduction will lead to disease activity, resulting in various complications.

Li Mengtao pointed out that in addition to the weak awareness of patients on standardized treatment and regular follow-up, there is also a serious shortage of grass-roots doctors' understanding of SLE diseases, and some medical staff do not have sufficient understanding of standardized treatment and standard treatment. Since the higher the degree of disease activity, the higher the risk of organ damage and death, "how to achieve the reduction of disease recurrence, reduce the accumulation of organ involvement, reduce complications, use the minimum dose of hormones that can maintain the stability of the disease, and even discontinue hormones, improve the long-term prognosis of patients is the focus of standard treatment, and is also a challenge in the current SLE diagnosis and treatment in China." Zeng Xiaofeng said.

Recently, the "China Systemic Lupus Erythematosus Development Report 2020" (hereinafter referred to as the "Report"), initiated and compiled by the National Clinical Research Center for Skin and Immune Diseases and the National Rheumatology Data Center, was released in Beijing. The report analyzes the epidemiology, clinical manifestations, treatment and prognosis status of SLE in China, and comprehensively reviews and summarizes the challenges and future development directions of SLE diagnosis and treatment in China, combined with the latest international research progress.

"This is the world's first report on SLE, which is of reference significance for promoting the development of global SLE." It is both a blue book, a textbook, and a reference book. Zeng Xiaofeng introduced that this report can not only enable the majority of medical workers in China to have a comprehensive understanding of SLE, but also improve the awareness of Chinese SLE patients on the nature of the disease and treatment, improve patients' treatment compliance, improve patients' short-term and long-term prognosis, and provide reference for relevant government departments to formulate policies.

Hormone therapy, if not?

The report points out that 89.51% of patients in China expect to reduce the use of glucocorticoids (hereinafter referred to as hormones).

According to the data of the Chinese Systemic Lupus Erythematosus Research Collaboration Group, 84.13% of patients with SLE in China are using hormones, and some of them take hormone doses equivalent to prednisone 15mg/d and last for more than 6 months and more, while the recommended dose of hormones for maintenance treatment is ≤ 10mg/d, indicating that the dose of hormones used for maintenance therapy in some patients is large, and adverse reactions also increase with the increase of dose.

How can I help patients reduce or even not use hormones? Li Mengtao pointed out that hormones are still the basic drugs for the treatment of systemic lupus erythematosus, and hormone therapy must be used during the course of the disease. However, the amount of hormones that mild, moderate and severe patients should use is different, so it is necessary to use stratified treatment, use different hormone amounts according to the condition, control the condition while appropriately reducing hormones, and can also be controlled by the doctor to gradually reduce hormone medication to the minimum, and even stop, "It should be emphasized that whether to gradually reduce the amount of hormones should be decided by the doctor, patients must not feel good about themselves to stop the drug without authorization, which is likely to increase the probability of recurrence." Li Mengtao said that he hopes that more effective drugs will appear in the future, which can be used for a long time and have few side effects, such as targeted drugs.

Li Mengtao introduced that at present, including China, the world has achieved fruitful results in the basic transformation of rheumatic immune diseases, and with the emergence of targeted drugs such as biologics, it is possible for patients to reduce the amount of hormones and achieve organ protection.