张卓莉教授:白塞病专题访谈

2022-03-04 MedSci原创 MedSci原创

梅斯医学独家专访北京大学第一医院风湿免疫科主任张卓莉教授——白塞病主题专访。

白塞病

白塞病是一种系统性血管炎,主要表现为反复发作的口腔溃疡、生殖器溃疡、皮肤损害,可能导致葡萄膜炎,亦可累及胃肠道、血管、心脏、神经系统、肺等内脏器官。

本期梅斯医学采访了来自北京大学第一医院风湿免疫张卓莉教授为大家带来有关白塞病的诊疗经验。

 

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风湿新前沿:白塞病的误诊率普遍比较高,您认为是什么导致了这样的现象?

张卓莉教授:

白塞病是一类常见的慢性系统性血管炎性疾病,在中东远东等地发病率较高,也是中国常见的一种血管炎性疾病,但该疾病非常容易误诊,正确的诊断是治疗的前提,所以及时、准确的诊断对治疗非常重要。

 

(一)多变的临床症状。白塞病的误诊主要是源于其多变的临床特点,其中多器官、多系统的受累表现非常突出。白塞病常见的表现如口腔溃疡,在正常人群中也非常多见,临床医生往往因为忽略这些症状而导致误诊。 

 

(二)白塞病没有特异血清学标记这也是导致白塞病误诊率高的一个非常重要的原因系统性红斑狼疮同样是自身免疫性疾病,可以通过自身抗体检测来帮助诊断,但是白塞病没有任何特异性抗体能够辅助诊断

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(三)部分临床医生对白塞病认知不在临床过程中,由于白塞病患者首发表现不同,首次就诊的学科不同,如果接诊医生对白塞病认知不够深入或者考虑不够周到,也会导致误诊。

 

2021年中华医学会风湿病学分会发布的《白塞综合征诊疗规范》对临床医生有怎样的意义?

张卓莉教授:

 

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张卓莉教授

多年来,中华医学会在各学科、各疾病里都发布过非常多的诊疗规范,这些治疗规范的发布,对于中国医生诊断和治疗是有帮助的。

我国白塞病病人相较于欧美国家的人群还是有其特殊性,我们不能完全将西方国家的标准规范照搬到中国患者身上,应该根据我们的病人特点、实际情况制定中国人的诊疗规范,给出适合中国患者的疾病防治建议。

 

风湿新前沿:2021年白塞病有哪些诊疗进展值得我们关注?您认为塞病来的研究方向主要有哪些?

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张卓莉教授:

白塞病仍是复杂的一类系统性血管炎性疾病,动、静脉以及大、中、小血管都可以受累。相较于类风湿关节炎、系统性红斑狼疮等其他风湿疾病,白塞病的进展并不多,咎其原因为欧美发达国家白塞病的患病率相对较低,关注度不高,而在中东、远东地区,虽然白塞病病人很多,但其经济发达程度及科研能力相对较弱。

多年来,虽然我们在不断提高对白塞病的认知,但在新治疗药物上还是相对局限,尤其是针对白塞病特异性药物,目前研发还是较少。

不过,对白塞病的靶向机制上有了更多的认识,尤其是针对特定靶点及靶向治疗方面,进行了更多的探索,比如肿瘤坏死因子拮抗剂,虽然它是治疗类风湿关节炎、强直性脊柱炎常用的生物制剂,但在白塞病某些器官系统受累方面,例如白塞眼病、白塞肠病等,在临床治疗过程中也取得了一定的疗效。

目前在中国临床研究过程中,也出现了一些仿制药,给中国的医生和患者提供了更多的选择。在未来,白塞病的新疗法尤其是精准治疗和个体化疗法,将会是研究的热点。

风湿新前沿:白塞病的患者通常需要终身治疗。考虑到长期用药所带来的毒副反应,您在什么情况下会考虑减药甚至停药呢?

张卓莉教授:

白塞病作为慢性自身免疫性疾病,往往需要终身治疗。对于不同轻重不同的病人,要根据其具体的临床表现来决定药物的种类和使用剂量。对于病情长期稳定的病人可以考虑减药。但是对于一些有严重并发症的病人来说,通常是需要长时间甚至是终身服药的,这些病人在停药后有非常高的复发风险。目前对于白塞病病人,达到完全停药下的疾病缓解还为时尚早。未来也需要更多的关于减停药与复发风险之间的研究。

此外,在治疗白塞病的所有药物中,长期使用糖皮质激素不良反应较多,因而减停激素是当下讨论的热点之一,比如通过使用免疫制剂甚至生物制剂,帮助激素减停。

 

风湿新前沿:是什么信念一路支持您走到现在?您对处于迷茫期的医生有哪些建议?

张卓莉教授:

 

作为一名在风湿病领域里工作30多年、年资较高的风湿科医生,我认为,多数年轻医生存在迷茫期的原因可能是因为重的工作压力和生活的压。那如何度过这段迷茫期以及未来如何成为一个好的医生?我给大家分享一些我个人成长的经历。

(一)一定要热爱。

如果你热爱一件事情,即使工作非常辛苦,也不会抱怨。

我从小就立志成为一名医生,所以在我报考大学时,只报了北京大学的临床医学专业,且不服从分配。几十年一路过来,凭借着对医学的热爱以及心中坚定的信念走到到今天。虽然工作经常十分辛苦,但正是因为热爱,才肯于付出,形成了甘于奉献的精神。

 

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几十年一路过来,凭借着对医学的热爱以及心中坚定的信念,坚信自己一定会越做越好。这种信念支撑着我走到到今天。在此过程中,虽然辛苦异常,但作为医生,就是要有肯付出、甘于奉献的精神。

 

(二)总结经验、寻找规律。

在工作过程中,不断地总结经验、寻找规律,剖析自己成功和失败的案例,多向身边优秀的医生学习经验,让自己进步更快,减少在成长过程中的挫折或失败等。这种方法能够让我们会走的更快,也会收获很多成就感。

(三)学会规划生活。

Design your life非常重要,不仅仅规划工作,也要兼顾生活规划生活,学会把握二者之间的平衡。

在此,我想对我们年轻的医生说,在会遇到短暂困难或困扰时,我们要能够坚定信念、不忘初心,朝着自己心中的方向去努力,那成功离我们肯定不远。如今的医疗环境和经济条件,比30年前已经进步了很多。中国在发展,中国风湿医学在发展,未来我们年轻的风湿科医生也一定会取得更大的进步。

最后,祝大家虎年快乐,虎虎生威!在生活和事业方面再上新的台阶,实现自己的人生梦想!

在此,我想对我们年轻的医生说,在会遇到短暂困难或困扰时,我们要能够坚定信念、不忘初心,朝着自己心中的方向去努力,那成功离我们肯定不远。如今的医疗环境和经济条件,比30年前进步很多。中国在发展,中国风湿医学在发展,未来我们年轻的风湿科医生也一定会取得更大的进步。

在此祝大家虎年快乐,虎虎生威。在生活和事业方面再上新的台阶,实现自己的人生梦想。

 

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    #医生的一天#病房的一天从交班、查房开始,了解患者的最新情况、开医嘱开始

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  4. [GetPortalCommentsPageByObjectIdResponse(id=2197548, encodeId=32a3219e548d7, content=<a href='/topic/show?id=eaa7112e6411' target=_blank style='color:#2F92EE;'>#医生的一天#</a>病房的一天从交班、查房开始,了解患者的最新情况、开医嘱开始, beContent=null, objectType=article, channel=null, level=null, likeNumber=3, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=112764, encryptionId=eaa7112e6411, topicName=医生的一天)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=24783615381, createdName=13360100m25暂无昵称, createdTime=Tue Apr 09 10:28:47 CST 2024, time=2024-04-09, status=1, ipAttribution=河南省), GetPortalCommentsPageByObjectIdResponse(id=1214611, encodeId=4fcd121461136, content=<a href='/topic/show?id=d945e1670d9' target=_blank style='color:#2F92EE;'>#白塞病#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=71670, encryptionId=d945e1670d9, topicName=白塞病)], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20211210/ede9c51184aa4f54ae6c1164cfb8eeac/967dbf3eff2943c7bf3ccfec3a776ab0.JPG, createdBy=a33789389, createdName=病毒猎手, createdTime=Tue Apr 26 15:34:10 CST 2022, time=2022-04-26, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1707486, encodeId=d7fc1e0748693, content=<a href='/topic/show?id=25df20e54dc' target=_blank style='color:#2F92EE;'>#专题#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=20754, encryptionId=25df20e54dc, topicName=专题)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=1f4231418733, createdName=108807375_62823137, createdTime=Thu Aug 18 10:41:05 CST 2022, time=2022-08-18, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1204858, encodeId=a73a120485865, content=非常感谢,好的学习, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://thirdwx.qlogo.cn/mmopen/vi_32/JMwOOgFpUGKibgRl81WG8Lia3uZrI0vLwz1U3KyazB6cOd7xjTvdS1iaBH7oT4hMNn00ToXSjUIqbLH9vURhicaQTQ/132, createdBy=1e8a5842809, createdName=小树mm, createdTime=Tue Mar 22 09:54:46 CST 2022, time=2022-03-22, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1199794, encodeId=d7f11199e94ac, content=写的真好, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=353c6535945, createdName=ms7000000180028603, createdTime=Sun Mar 06 01:12:27 CST 2022, time=2022-03-06, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1199365, encodeId=68ea11993656e, content=厉害!, beContent=null, objectType=article, channel=null, level=null, likeNumber=74, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2fae4831031, createdName=21983604, createdTime=Fri Mar 04 13:04:04 CST 2022, time=2022-03-04, status=1, ipAttribution=)]
    2022-03-22 小树mm

    非常感谢,好的学习

    0

  5. [GetPortalCommentsPageByObjectIdResponse(id=2197548, encodeId=32a3219e548d7, content=<a href='/topic/show?id=eaa7112e6411' target=_blank style='color:#2F92EE;'>#医生的一天#</a>病房的一天从交班、查房开始,了解患者的最新情况、开医嘱开始, beContent=null, objectType=article, channel=null, level=null, likeNumber=3, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=112764, encryptionId=eaa7112e6411, topicName=医生的一天)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=24783615381, createdName=13360100m25暂无昵称, createdTime=Tue Apr 09 10:28:47 CST 2024, time=2024-04-09, status=1, ipAttribution=河南省), GetPortalCommentsPageByObjectIdResponse(id=1214611, encodeId=4fcd121461136, content=<a href='/topic/show?id=d945e1670d9' target=_blank style='color:#2F92EE;'>#白塞病#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=71670, encryptionId=d945e1670d9, topicName=白塞病)], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20211210/ede9c51184aa4f54ae6c1164cfb8eeac/967dbf3eff2943c7bf3ccfec3a776ab0.JPG, createdBy=a33789389, createdName=病毒猎手, createdTime=Tue Apr 26 15:34:10 CST 2022, time=2022-04-26, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1707486, encodeId=d7fc1e0748693, content=<a href='/topic/show?id=25df20e54dc' target=_blank style='color:#2F92EE;'>#专题#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=20754, encryptionId=25df20e54dc, topicName=专题)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=1f4231418733, createdName=108807375_62823137, createdTime=Thu Aug 18 10:41:05 CST 2022, time=2022-08-18, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1204858, encodeId=a73a120485865, content=非常感谢,好的学习, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://thirdwx.qlogo.cn/mmopen/vi_32/JMwOOgFpUGKibgRl81WG8Lia3uZrI0vLwz1U3KyazB6cOd7xjTvdS1iaBH7oT4hMNn00ToXSjUIqbLH9vURhicaQTQ/132, createdBy=1e8a5842809, createdName=小树mm, createdTime=Tue Mar 22 09:54:46 CST 2022, time=2022-03-22, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1199794, encodeId=d7f11199e94ac, content=写的真好, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=353c6535945, createdName=ms7000000180028603, createdTime=Sun Mar 06 01:12:27 CST 2022, time=2022-03-06, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1199365, encodeId=68ea11993656e, content=厉害!, beContent=null, objectType=article, channel=null, level=null, likeNumber=74, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2fae4831031, createdName=21983604, createdTime=Fri Mar 04 13:04:04 CST 2022, time=2022-03-04, status=1, ipAttribution=)]
    2022-03-06 ms7000000180028603

    写的真好

    0

  6. [GetPortalCommentsPageByObjectIdResponse(id=2197548, encodeId=32a3219e548d7, content=<a href='/topic/show?id=eaa7112e6411' target=_blank style='color:#2F92EE;'>#医生的一天#</a>病房的一天从交班、查房开始,了解患者的最新情况、开医嘱开始, beContent=null, objectType=article, channel=null, level=null, likeNumber=3, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=112764, encryptionId=eaa7112e6411, topicName=医生的一天)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=24783615381, createdName=13360100m25暂无昵称, createdTime=Tue Apr 09 10:28:47 CST 2024, time=2024-04-09, status=1, ipAttribution=河南省), GetPortalCommentsPageByObjectIdResponse(id=1214611, encodeId=4fcd121461136, content=<a href='/topic/show?id=d945e1670d9' target=_blank style='color:#2F92EE;'>#白塞病#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=71670, encryptionId=d945e1670d9, topicName=白塞病)], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20211210/ede9c51184aa4f54ae6c1164cfb8eeac/967dbf3eff2943c7bf3ccfec3a776ab0.JPG, createdBy=a33789389, createdName=病毒猎手, createdTime=Tue Apr 26 15:34:10 CST 2022, time=2022-04-26, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1707486, encodeId=d7fc1e0748693, content=<a href='/topic/show?id=25df20e54dc' target=_blank style='color:#2F92EE;'>#专题#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=20754, encryptionId=25df20e54dc, topicName=专题)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=1f4231418733, createdName=108807375_62823137, createdTime=Thu Aug 18 10:41:05 CST 2022, time=2022-08-18, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1204858, encodeId=a73a120485865, content=非常感谢,好的学习, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://thirdwx.qlogo.cn/mmopen/vi_32/JMwOOgFpUGKibgRl81WG8Lia3uZrI0vLwz1U3KyazB6cOd7xjTvdS1iaBH7oT4hMNn00ToXSjUIqbLH9vURhicaQTQ/132, createdBy=1e8a5842809, createdName=小树mm, createdTime=Tue Mar 22 09:54:46 CST 2022, time=2022-03-22, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1199794, encodeId=d7f11199e94ac, content=写的真好, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=353c6535945, createdName=ms7000000180028603, createdTime=Sun Mar 06 01:12:27 CST 2022, time=2022-03-06, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1199365, encodeId=68ea11993656e, content=厉害!, beContent=null, objectType=article, channel=null, level=null, likeNumber=74, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2fae4831031, createdName=21983604, createdTime=Fri Mar 04 13:04:04 CST 2022, time=2022-03-04, status=1, ipAttribution=)]
    2022-03-04 21983604

    厉害!

    0

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