alindromic的风湿病查询
Hello , I’m new to the forum and don’t know why I didn’t visit before as it seems a very sensible place to obtain advice .
To cut a long story short I have been backwards and forwards to rheumatology for the last 4 years or so. I started with roving joint pain and blood tests showed high anti ccp and negative RF. whenever I saw the consultant after a flare the issue had settled and the ultra sounds were unremarkable. In 2019 I was was seen by a research fellow who diagnosed RA after Doppler positive findings in a painful shoulder and wrist. I started on MTX and hydroxchloroquine. When I saw the consultant a few months later I was well and queried whether I should stay on the drugs , she said she had doubted the diagnosis and invited me to come off the meds which I did. I have continued to have flare ups but been well in between for the last year, she said she thought it was palindromic rheumatism which may or may not evolve to RA. I have found it very stressful because I am asked to be vigilant and photograph my joints whilst at the same time get on with my life and forget about something that may never happen.
9月，我每隔几天就有非常明显的关节耀斑开始，有些非常痛苦。尽管我给她发了电子邮件，但我没有见过顾问。我看到了很棒的护理团队，但告诉我我需要加入MTX，无论是否出现，它会变得更糟，并指出了药物。他们以15毫克的MTX开始了我。我的ESR是31岁，他们按照我的要求重新删除了RF，现在读数为36，仍然很低。
I emailed the consultant to ask for clarification whether she felt the medication was warranted and said I would not want to cause systemic damage or joint damage and if I have shifted to RA then I would take the meds but if controlling the flare up was all I was trying to do without risking any other long term effects I would probably think twice about taking the meds. I asked if it was possible to X-ray my hands and wrists to see if there was any damage which might support taking the medication. She basically said it was up to me what I did , that even if the joints were swollen continuously I wouldn’t damage the joints for several months so I could wait if I wanted to. She said there was no way of knowing if it had flipped to RA . I asked her to tell me if she thought I should take the drugs and she wouldn’t commit, just said it was up to me but if I did take the drugs I should go on 25mg of MTX for up to 6 months not 15 as prescribed.
我感到非常困惑，明天我会得到矛盾的建议，并明天有护士预约，但没有被预约去看顾问。我感觉到顾问发现处理我对确定性的需求非常令人讨厌的感觉，我觉得我现在必须完全独自做出这些非常重要的决定。
so I turn to you for some direction. I don’t think asking for a second clinical opinion is going to get me anywhere as the face of medicine seems to have changed so much with Covid. I guess I wouldn’t have queried with the consultant the medication if I was sure in myself it was what I needed. Trouble is that when I’m not having a flare although my hands and wrists are a bit stiff and sore I feel ok. When the joints are painful, then it is a struggle and I accept there is something quite wrong but knowing the flare will pass within a day or so enables me to deal with it and although the joints are tender after a flare it is remarkable how they can go from being excruciatingly painful to clear of pain in a matter of hours.
我猜想我所描述的是经典的全文风湿病，任何人都可以说我应该对药物做什么，并且这些症状也可能是RA，这意味着我不服用药物，我对自己没有帮助。
我还担心每次不接受他们提供的建议或药物的药物，这将使以后更难获得治疗。
Thank you
注释
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jeddison1985 ModeratorPosts:174Hi@Harping首先，让我欢迎您参加论坛，希望您能找到来自我们美好社区的信息和支持。
I can see from your post that you have had a difficult time with a lot of conflicting messages and advice around treatment, diagnosis, medication and how to get on top of your symptoms. I am really sorry to hear that you have such an experience.
It seems like your main queries are related to palindromic rheumatism and the related medication.
The site is full of information and I wanted to signpost you to some information in relation to Palindromic Rheumatism and also around Methotrexate which you indicated is what you have been given.
还要从个人经验中注意到，我知道这可能并不是什么舒适的，但是通常我们必须在接受新药物或下一阶段之前要失败。
请随时搜索与其他经验相似的其他人的论坛，我相信我们的一些社区将能够帮助提供一些有用的建议。
Take care and I hope you get some relief and answers soon.
谢谢
Joe
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Harping MemberPosts:3
谢谢乔。我已经阅读了有关腔植物风湿病的信息，并觉得我对此有很多了解。我想我的主要疑问是如何知道它现在是否是RA以及如何处理医疗保健系统的处方冲突。我想，尽管我都赞成患者铅治疗，但这感觉很随意！
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Helpline_team Posts:2,396Hi Harping,
感谢您在热线网络论坛上发布。很遗憾得知您一直在为自己的病情爆发而苦苦挣扎，并且您对自己的诊断以及适合您的药物有矛盾的意见。听起来好像您一直在艰难的旅程中，您需要对自己的状况和前进的最佳待遇进行更多澄清。被告知，您的全回旋风湿病可能会或可能不会演变成RA，这增加了困惑和焦虑，您想知道如何知道您现在是否有RA。
Joe has given a helpful response to your post with links to more information. Talking things through further with your rheumatology nurse tomorrow may also help and clarify things for you. Although you are thinking that a second opinion won’t help, asking your GP for a second opinion from a different rheumatologist on the NHS may be worth considering. A private consultation with a different rheumatologist would be another option. We are not medically trained.
如果您想在任何时候通过非正式地谈论您的关节炎，欢迎您致电我们的免费热线热线，致电0800 520 0520工作日上午9点至下午6点。在我们在关节炎论坛上的生活中发布可能会产生更多的反应，这将是与面临类似挑战的其他人保持联系的一种方式。
I hope the information given below will be of some help.
最好的祝愿，
Fiona，热线助理顾问
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