Core tip: Systemic lupus erythematosus requires long-term systematic treatment, and patients should follow up regularly and should not stop taking medication because their symptoms have improved, as this can be life-threatening if complications are inadvertently caused. Xiao Ping, a 14-year-old girl from Hainan, was diagnosed with SLE two years ago, and her symptoms were slightly relieved after treatment, but she failed to follow the instructions for regular follow-up due to financial reasons, and did not receive standardized treatment. At the beginning of this year, Ping was sent to the Second People’s Hospital of Guangdong Province for rescue. After treatment, Ping, who had been in a coma for 9 days, finally turned to safety and her condition improved, and she will be discharged from the hospital in the near future. Doctors reminded that patients with lupus erythematosus should be prepared to fight a “protracted war”, pay attention to systematic treatment and regular follow-ups, and do not increase or decrease the amount of medication or stop it without authorization. Unauthorized discontinuation of medication led to deterioration and fainting for 9 days In February 2012, Xiao Ping, who was attending school, developed recurrent fever, joint pain and facial erythema. After being diagnosed with SLE at a local hospital, doctors treated her with hormones and immunosuppressants, and her symptoms subsided. However, because of financial reasons, Xiao Ping failed to follow the instructions for regular follow-up. In January 2013, she developed swelling in both lower limbs and then came to the outpatient clinic of the Department of Rheumatology and Immunology of Guangdong Second People’s Hospital, where she took oral medication every month for nearly a year. Doctors repeatedly persuaded the patient’s parents to return to the hospital twice a month for immunosuppressant injections to control the disease, but for financial reasons, Xiao Ping did not return to the hospital for regular follow-up, resulting in the delay of the disease. ”It is dangerous to come to the doctor for treatment only when you are critically ill, and such irregular treatment is dangerous.” Li Tianwang, director of the Department of Rheumatology and Immunology of the Provincial Second Medical Doctor, introduced that in 2014 alone, Xiao Ping was hospitalized three times, the heaviest one was in November 2014, Xiao Ping was admitted again for fever, generalized swelling and coma, epilepsy appeared during hospitalization, and was diagnosed with systemic lupus erythematosus, lupus nephritis, neuropsychiatric lupus, renal insufficiency, thalassemia, severe anemia, hypoproteinemia, left lung Pneumonia, etc. The patient was in a coma for 9 days. Social workers were stationed in the ward to raise money and pray for the patients. During the 9 days when Ping was in coma, doctors treated her with hormones, immunosuppression, anti-inflammation, diuresis and swelling, and blood transfusion. But because of the critical condition, the subsequent need for high-dose hormone shock therapy, and the use of albumin, gammaglobulin, blood transfusions and other expensive drugs, such as pneumonia, kidney failure and other complications, may also be life-threatening. “If we can get through this hormone shock period, the condition is expected to reach a long-term stable state after control”, said Li Tianwang. The use of a large number of high-priced drugs has put a heavy financial burden on Ping’s family. In order to help Ping raise money, the doctor decided to ask for help from Guangzhou Paisen Social Work Resource Center in Haizhu District. Thanks to the efforts of the social worker, the Guangzhou Weibo Children’s Welfare Foundation provided financial support to Xiao Ping. With the joint efforts of everyone, Xiao Ping, who had been in a coma for 9 days, finally came to her senses recently and her condition has improved. Reminder: lupus patients should not stop taking medication without permission “Many patients with SLE stop taking medication because their surface symptoms have improved during treatment.” Director Li Tianwang reminded that it is very dangerous for SLE patients like Xiao Ping to stop their medication without following medical advice, and once some listed complications appear, untimely resuscitation will endanger their lives. For patients with SLE and other rheumatic diseases, they should be prepared to fight a “protracted war”, establish confidence in overcoming the disease, always pay attention to changes in their conditions, conduct regular reviews, follow the guidance of doctors, and not arbitrarily reduce the amount of drugs or even stop them. (Correspondent: Deng Yimao)