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幼年特发性关节炎——家长手册

 

 

 “Juvenile Idiopathic Arthritis” (JIA) is a term used to describe arthritis in children.  ‘Juvenile’ means under 16 years of age, ‘Idiopathic’ means the cause of arthritis is still unknown, ‘Arthritis’ means joint inflammation. 

 

“幼年特发性关节炎（Juvenile Idiopathic Arthritis, JIA）”是指发生于儿童和青少年时期的关节炎症。其中，“幼年（Juvenile）”表示发病年龄低于16周岁，“特发性（Idiopathic）”意味着其具体病因不明，而“关节炎（Arthritis）”则指发生于关节处的炎症。

 

 

What is Juvenile Idiopathic Arthritis ? 

 

什么是幼年特发性关节炎？

 

Juvenile Idiopathic Arthritis is an autoimmune disease affecting one or more joints for more than 6 weeks in children before his/her 16th birthday. There are 7 subtypes of juvenile idiopathic arthritis, which your child may fit into one of them.  Different subtypes of JIA have different disease course and vary in prognosis. 

 

幼年特发性关节炎是一种自身免疫病，影响16岁以下儿童和青少年，其导致的关节症状可长达6周以上。这一疾病可分为7种亚型，其病程与预后各不相同。

 

 

What causes Juvenile Idiopathic Arthritis ?

 

幼年特发性关节炎如何发生？

 

The cause of JIA is still unknown. It is believed that the interactions between genetic predisposition and environmental factor play a role in the pathogenesis. 

 

目前，医学界对幼年特发性关节炎的具体病因尚不明确。但已有研究表明，该病的发生与遗传和环境因素都有关系。

 

 

What are the signs and symptoms ?

 

该病有哪些症状？

 

Signs of joint inflammation include joint swelling, pain, increased in warmth and limitation of joint movement. Some children may experience joint stiffness. These symptoms are typically worse in the morning. If your child limps or refuses to move the affected joints especially in the morning (lasting more than 30 minutes for 3 consecutive days), this is one of the alarming signs that you should consult the doctor early. 

 

关节发炎的症状包括关节肿痛、发热，以及关节活动受限等；许多患儿也会感到关节僵硬。这些症状通常在早晨更为严重。如果您的孩子不愿使用某些关节，尤其在早间、持续时间超过30分钟、或症状持续超过3日，应当考虑及时求医。

 

 

How is the diagnosis of JIA made ? 

 

如何诊断幼年特发性关节炎？

 

Diagnosis is made based on history and clinical assessment by doctors. There is no laboratory test which confirms the diagnosis of JIA. Your doctor may perform some blood tests to help in differentiating JIA from other diseases and predicting the disease course and potential complication risks. These tests are usually done in your first clinic visit. 

 

目前，尚没有可单独诊断这一疾病的辅助检查，因此幼年特发性关节炎的诊断是由医生综合病史与临床检查结果而做出。您的医生同时也可能也会做一些相关血液检查，以预测病程发展，评估发生并发症的风险。这些检查通常在第一次就诊时完成。

 

 

What are the available treatments? 

 

针对该病目前有哪些治疗手段？

 

JIA is treatable. Over the years, treatment for JIA has developed rapidly. An increasing number of newer and effective treatments are approved for use in JIA. Treatments of JIA include non-steroidal anti-inflammatory drugs (NSAIDS), disease modifying anti-rheumatic drugs (DMARDS) such as methotrexate, steroids (prednisolone) and biologics (Enbrel, Humira, Remicade).

 

幼年特发性关节炎可治。在过去几十年内，相关的研究进展迅速，已有更多更新、更有效的疗法被批准用于临床治疗。对于该病常用的治疗药物包括：非甾体抗炎药物（NSAIDs），疾病修饰性抗风湿药物（DMARDs）例如甲氨蝶呤（Methotrexate），类固醇（Steroids）如强的松龙（Prednisolone），以及生物制剂（Biologics）如恩利（Enbrel）、修美乐（Humira）、瑞米凯德（Remicade）。

 

Joint fluid aspiration with intra-articular steroids joint injection is a treatment option for some patients. 

 

此外，关节内类固醇注射（即关节穿刺术）也是一种常用的治疗手段，适用于部分病人，可以有效缓解症状。

 

Your doctors will advise you on the treatment required for your child as the treatment is individualized. It is extremely important for you to be COMPLIANT with the treatment and follow-up. 

 

由于治疗方案因人而异，您的医生会对此提出具体建议。为达到治疗目的，请您务必叮嘱患儿，应遵医嘱服药，并按时复诊。

 

 

Is there any lifestyle modification or limitation ?

 

患儿的日常生活中有注意哪些事项？是否有活动限制？

 

Your child should be encouraged to involve in physical exercises. Your doctor may advise temporary joint rest if the joint is inflammed. Otherwise, your child has no limitation in physical activities.  Physical injuries should be prevented at all times. 

 

我们建议您鼓励孩子积极参加体育锻炼。如果某些关节处于炎症的急性发作期，医生可能会建议减少这些关节的使用。除此之外，在确保不会受外伤的情况下，无需对孩子的日常活动进行限制。

 

 

Is there any dietary restriction ?

 

患儿有哪些忌口？

 

NO. You are advised to speak to your doctor first if you decide to start your child on any health supplements or traditional medications as some of these medications may interact with the medications prescribed by your doctor. 

 

该病患儿无需忌口。但是，我们建议您在决定使用某种保健品或中成药之前，应告知医生，因为其中的某些成分可能会与某些治疗药物发生不可预知的相互作用。

 

 

Do my child need regular blood tests ? 

 

我的孩子需要定期抽血化验吗？

 

Regular blood tests are used to monitor side effects of medications. Your doctor will advise you on the frequency of blood tests, which is usually more frequent during the first 2 months when your doctor starts your child on a new medication. 

 

定期血液检查有助于及早发现治疗药物的副作用。您的医生会安排具体的验血时间。由于患儿一般在就诊的最初2个月里开始服用新药，此类检查会相对频繁一些。

 

 

What are the potential complications ? 

 

该病会导致那些并发症？

 

Untreated or poorly controlled joint disease will result in joint damage, muscle wasting (disuse atrophy), leg length discrepancy, growth failure and permanent disability. 

 

如不能得到及时控制，此类关节炎症将导致关节损伤、相关肌肉萎缩、两侧肢体生长差异、生长停滞、乃至本可避免的终身残疾。

 

 

Do my child need physiotherapy ? 

 

我的孩子需要物理疗法吗？

 

Your doctor will advise you on when physiotherapist will be involved in the management of your child’s condition. Physiotherapy via stretching and strengthening exercises help in the recovery and restoration of the joint function. 

 

如确有所需，医生会建议物理治疗师参与您孩子的治疗。物理疗法通过拉伸和强化练习，有助于保持和恢复受影响关节的功能。

 

 

Can I vaccinate my child ? 

 

我的孩子可以进行疫苗接种吗？

 

You need to inform the doctor if you are going to send your child for vaccination as live vaccines, for example MMR, oral polio and varicella zoster vaccine, are contraindicated when the child is on certain treatment (methotrexate/biologics) 

 

如果您计划给孩子进行活疫苗接种，如口服脊髓灰质炎疫苗（Polio）、麻疹-腮腺炎-风疹疫苗（MMR），请事先告知医生，因为上述疫苗接种可能与您孩子使用的某些药物（如甲氨蝶呤和某些生物制剂）互为禁忌。

 

 

What is the likely outcome of the disease ? 

 

该病的预后如何？

 

In general, there is no cure for JIA but it has good prognosis with adequate and early treatment. Every child responds differently to treatment. Therefore, it is difficult to predict the outcome of the disease, and risks of recurrence depend on the disease subtypes.  Course of disease may fluctuate with time. Some children may go into what doctors call as “remission’, which means that the symptoms disappear and sometimes, never comes back again although unfortunately, many recur. Therefore, early identification of disease flare is important. 

 

一般而言，幼年特发性关节炎虽难以根治，但如果治疗及时，其预后一般较好。由于患儿个体差异，很难具体预测治疗的效果。患儿的病情一般随时间发展而波动，其中一些患儿可彻底摆脱关节症状，进入“疾病缓解期”，甚至不再复发。上述患儿的症状是否复发，主要取决于其疾病所属具体亚型。及早发现病情发作，将有助于有效控制病情。

 

 

How do I detect flare in my child’s condition?

 

如何发现我孩子的病情发作？

 

Contact your doctor if your child has limping in the morning for 3 consecutive days or if there are presence of joint swelling and/or pain. 

 

如果您发现孩子连续三日于晨间跛行、或有任何关节炎症的迹象（例如关节肿痛），请及时联系医生复诊。

 

 

If you have any queries about your child’s condition, you can contact us. 

 

如果您对于孩子的病情有任何疑问，也欢迎联系我们。

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