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回归“有力人生”,重症肌无力患者建议做好这些事
Zhong Guo Xin Wen Wang· 2026-02-28 03:41
Group 1 - The 19th International Rare Disease Day on February 28 aims to raise awareness and understanding of various rare diseases, including myasthenia gravis, which is a chronic autoimmune disease affecting daily life and can be life-threatening during acute exacerbations [1] - Myasthenia gravis is categorized into ocular and generalized types, with the generalized form included in the first batch of rare diseases recognized by the state in 2018 [1] - Standardized treatment is emphasized as essential, with a focus on achieving dual targets: controlling symptoms and minimizing drug side effects to facilitate a quicker return to normal life [1][4] Group 2 - Post-acute phase, patients are at high risk of relapse within a year after discharge, and self-discontinuation of medication can be dangerous due to lingering immune dysregulation [2] - It is recommended that patients undergo consolidation therapy under medical guidance, such as using FcRn antagonists like efgartigimod for six months to reduce relapse risk [2] - Each patient's condition is unique, and treatment plans must be followed as prescribed, avoiding self-medication [2] Group 3 - Patients can monitor their condition at home using the MG-ADL assessment, which evaluates daily abilities related to speaking, chewing, swallowing, and breathing [3] - A lower MG-ADL score indicates better symptom control, with scores above 2 points from previous assessments suggesting potential disease fluctuations that require medical consultation [3] Group 4 - The treatment goal for myasthenia gravis is to achieve "dual targets": symptom control and side effect management, with a specific focus on reducing daily steroid doses to a safe range of 5 to 10 mg [4] - Research indicates that for every one-point increase in MG-ADL score, the risk of disease worsening increases by 13%, and maintaining steroid doses above 10 mg can lead to higher adverse reaction rates [4] - Non-acute phase patients are encouraged to seek better treatment options under medical supervision to improve their quality of life and regain control over their lives [4]
狼疮新药研发又有新进展,治疗策略转向“长期缓解与器官保护”
Bei Ke Cai Jing· 2026-02-10 05:45
Core Insights - Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that imposes a significant burden on patients, families, and society, necessitating a focus on controlling disease activity while minimizing long-term treatment risks [1][2] Group 1: Disease Characteristics - SLE is characterized by an immune system that mistakenly attacks the body's own tissues and organs, leading to diverse clinical manifestations [2] - Approximately 45% of SLE patients in China experience kidney involvement, and 37% have blood system abnormalities, with these rates being higher than in Western populations [2] - China has the highest number of SLE patients globally, predominantly affecting young women of childbearing age, with an average onset age of around 30 years [2] Group 2: Treatment Landscape - Historically, SLE treatment options were limited, primarily relying on steroids and immunosuppressants, leading to a "drug scarcity" situation for patients [3] - Long-term use of steroids can result in significant side effects, including obesity, osteoporosis, and elevated blood sugar levels, while immunosuppressants may increase infection risks [3] - The treatment strategy for SLE is shifting from "symptom control" to "long-term remission and organ protection," with the concept of "targeted therapy" emerging to maintain low disease activity or clinical remission [3] Group 3: Advances in Treatment - Recent advancements in treatment options, including biological agents, small molecule drugs, and cell therapies, have revolutionized SLE management [3] - Effective management of steroid use is crucial, as maintaining steroid levels without reduction equates to not achieving treatment goals [3] - The evolving treatment landscape aims to balance the reduction of steroid-related side effects with the risk of disease relapse during tapering [3]
济南市皮肤病性病专业医疗质量控制中心2025工作会议顺利召开
Qi Lu Wan Bao· 2025-11-26 09:31
Core Viewpoint - The meeting held on November 22 aims to enhance the medical quality control and safety management capabilities of dermatology and venereology in Jinan, aligning with the Shandong Provincial Health Commission's 2025 goals for medical quality improvement [1][3]. Group 1: Quality Control Goals - The first core goal established is to increase the screening rates for immunosuppressants, biological agents, and small molecule targeted drugs before and during treatment for psoriasis, a prevalent chronic inflammatory skin disease [3]. - The second goal focuses on improving the standardized treatment rate for syphilis patients, emphasizing compliance with medication plans, complete treatment courses, and standardized follow-ups [3]. Group 2: Implementation and Management - The director of the quality control center, Wang Dajian, highlighted that the established quality control goals are crucial for enhancing the uniformity of dermatology and venereology diagnosis and treatment across the city [5]. - Wang Dajian called for clear division of responsibilities among member units, detailed implementation plans, and strengthened departmental collaboration to ensure the effective execution of quality control requirements [5]. - The meeting set a clear path for improving the quality of dermatology and venereology in Jinan, with the quality control center leading the implementation of measures and conducting regular evaluations to enhance standardization [5].