Which Meds?

Axe09 · 15. 2021年11月18:11

Hello

I have recently been diagnosed with RA, which came as a bit of a shock. Fit and very active male.

I haven't started meds yet (as I may be in denial I guess) but am undecided whether to take Methotrexate by pen injection or Sulfasalazine orally, daily. I have been given a choice!

根据我的收集，SFZ在MTX上的有效性不佳，但严重的副作用可能会更少？

Any advice would be greatly appreciated.

jeddison1985 · 15. 2021年11月18:18

Hi@Axe09firstly let me welcome you to the forum I hope you find the information and support you are after from our wonderful community.

I can see from your post that you have recently been diagnosed with RA and not sure which medication you should try. From personal experience having been on both medications you mentioned in the past I can tell you that everyone's response is individual to them.

The site is full of information and I wanted to signpost you to some information which could help around Methotrexate and Sulfasalazine.

//www.wfysxh.com/about-arthritis/treatments/drugs/methotrexate/

//www.wfysxh.com/about-arthritis/treatments/drugs/sulfasalazine/

这也是甲氨蝶呤的线程，人们以前分享了他们的经验。

<\/img> x","bodyRaw":"Hey im going on methotrexate and i was wondering do you take folic acid the day before or the day after you have taken the methotrexate. :smile: x","format":"bbcode","dateInserted":"2011-02-22T14:51:46+00:00","insertUser":{"userID":18423,"name":"loopylou94","url":"https:\/\/community.versusarthritis.org\/profile\/loopylou94","photoUrl":"https:\/\/wa.vanillicon.com\/v2\/a180e92fa9b59b5792fb5d2bddfc4ea7.svg","dateLastActive":"2012-09-18T09:50:22+00:00","banned":0,"punished":0,"private":false},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":false,"showPostLink":false,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/comment\/314878#Comment_314878","embedType":"quote"}"> https://community.versusarthritis.org/discussion/comment/314878#Comment_314878

和类似的磺胺丙嗪。

https://community.versusarthritis.org/discussion/comment/337456#Comment_337456

Please feel free to search the forum for others with similar experiences and I am sure that some of our community will be able to help offer some useful suggestions.

小心和I hope you get some relief and answers soon.

谢谢

乔

Frogmorton · 16. 2021年11月，05：54

Hi@Axe09

您已经很好地总结了两个选项！我想这是个人选择的问题。

反复试验是问题的真实性以及您自己的个人疾病的积极性。许多人根本没有经历许多副作用，而有些人则在适应系统中的“新事物”时会遇到很多副作用。

In either case you will be monitored closely especially at the beginning to make sure your body is coping with them.

Personally I would bite the bullet and make your decision. Do let us know which you chose!

小心

Axe09 · 16. Nov 2021, 19:05

Thank you@frogmorton和@jeddison1985有关信息，这非常有帮助。

I must add that the only reason I am on the fence is as my diagnosis happened very unexpectedly.

No real joint pain to speak of prior to diagnosis.

Had my first AZ vaccine which caused my opposite arm (elbow) to become inflamed and locked. I could barely lift my arm). I was unable to see a Doctor face to face but was told it was possibly Tennis Elbow and I should do some hand/wrist exercises.

Things started to improve after a couple of months and I was able to do most of what I could do previously (apart from training, in fear of what damage I may cause!). Long story short, I had my second AZ vaccine and within 12 hours I was in A & E and remained in hospital for 8 days. My elbow was severely inflamed. I was unable to move it again. I was on antibiotics and fluids by IV. CRP and RF were worryingly high yet joints all looked fine on MRI and X-rays. CRP now 4.2 but RF and Anti-CCP are positive.

根据骨科治疗后，我经过了疫苗的细菌感染，这些骨科在感染后将我转移到了风湿病。自从我上次AZ疫苗和几周前的超声波检查似乎正在改善以来的5个月，表现出炎症。我能够继续做大多数事情，园艺，繁重的工作，所以我不确定该怎么做。诊断后的14周后，我应该疼痛还是正常感觉很好？

因此，立即开始使用药物的原因有点犹豫，但是如果我要继续（我相信我会的），我会选择SFZ。如果我的症状随着时间的流逝而继续改善，您仍然建议仅根据血液读数服用药物吗？我了解这确实是专业人士的问题，但只是试图根据过去的经验来对此有所了解。我的顾问正在推动我带他们去，我知道她只是在试图提供帮助，但我从未经历过这样的事情，从来没有经历过，发现很难理解RA诊断的所有变量。我不想对肘部造成任何不可逆转的损害（因为这非常有用！！）

Apologies for the long post and if I have posted it in the wrong place

JenHB · 16. Nov 2021, 21:46

有趣的是了解您的经历 - 我的诊断是在10月开始的，因为膝盖突然突然肿胀（骑自行车假期后几天，但后来有些人对Covid进行了阳性，在第二次辉瑞jab之后的一个月），没有其他人，也没有其他测试症状。如果类固醇注射/液体排干，似乎使它们平静下来，但是现在几天后，流感戳刺就无法在不使用手的情况下从椅子上站起来，然后等待风湿病护士的回电。像你一样，通常适合和活跃

Frogmorton · 17. Nov 2021, 07:24

Aha! I see your concerns now@Axe09

RA（和大多数炎症性关节炎）的事情是，它们似乎已经消失了，而且几个月来的人甚至几年都很好。认为这一切都很容易，但这是您可能会造成的长期伤害的想法。正如您所说，肘部非常有用！

目前，CRP（炎症标记）已经下降，但是如果您再次发作，它将恢复。在超声波上仍然可见炎症。嗯。...您的顾问不希望您可能会对关节长期损害。

How quickly does she want a decision? Is she happy to delay until your next review? . It sounds as though you have made a decision there to try Sulf as and when you go down the meds route. If it helps there have absolutely been people here whose disease is under control on Sulf alone.

You do not need to apologise for the long post it was useful and not posted in the wrong place at all.

@JenHBI am glad you are getting a called back from Rheumatology and are still being monitored. It could be that your vaccinations are linked, but maybe not it could be a coincidence. I hope yours and OP's have been noted 'somewhere' in case it is more widely significant. I hope things improve for you soon and you get some answers ((()))

Axe09 · 17. Nov 2021, 19:13

Interesting to read about your experience - my diagnosis happened start of October as knees became very swollen suddenly end of August (a few days after a cycling holiday, but some people subsequently tested positive for Covid and a month after second Pfizer jab) and no other symptoms. Had steroid injection\/fluid drained which seemed to calm them down but now a few days after having a flu jab can't stand up from a chair without using hands and so awaiting a call back from the rheumatology nurse. Like you, normally fit and active<\/p>","bodyRaw":"[{\"insert\":\"Interesting to read about your experience - my diagnosis happened start of October as knees became very swollen suddenly end of August (a few days after a cycling holiday, but some people subsequently tested positive for Covid and a month after second Pfizer jab) and no other symptoms. Had steroid injection\\\/fluid drained which seemed to calm them down but now a few days after having a flu jab can't stand up from a chair without using hands and so awaiting a call back from the rheumatology nurse. Like you, normally fit and active \\n\"}]","format":"rich","dateInserted":"2021-11-16T21:46:30+00:00","insertUser":{"userID":118878,"name":"JenHB","url":"https:\/\/community.versusarthritis.org\/profile\/JenHB","photoUrl":"https:\/\/w6.vanillicon.com\/v2\/65900b3841c155555985759782912ee1.svg","dateLastActive":"2023-01-11T20:43:47+00:00","banned":0,"punished":0,"private":false},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":false,"showPostLink":false,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/comment\/687172#Comment_687172","embedType":"quote"}"> https://community.versusarthritis.org/discussion/comment/687172#Comment_687172

It's a difficult one isn't it. Either RA was dormant and the vaccine triggered it as a flare up so it may be a good thing that it has been brought it to the fore. Or, the vaccine has caused (dare I say!) it but I guess we will never know the answer to that.

We don't know that if the vaccine has caused it, if it will be permanent or will the symptoms subside in time? Whatever the answer to these questions we ought to try and get it under control in case it is a permanent feature of our makeup。

我很想知道您的风湿病学护士对此有何看法，以及您的血液测试是否对RA呈阳性。

Axe09 · 17. Nov 2021, 19:27

Aha! I see your concerns now @Axe09<\/a> <\/p>

Thing with RA (and most inflammatory Arthritides) is they can be like that appear to be gone and all is well for months some people even years. It's tempting to think it's all over, but it's that thought of long term damage you might be doing. As you say an elbow is very useful to have!<\/p>

CRP (inflammatory markers) is down at the moment, but if you flare again it will go back up. Inflammation is still visible on ultrasound. Hmmm....your consultant won't want you to risk long-term damage to your joints.<\/p>

How quickly does she want a decision? Is she happy to delay until your next review? . It sounds as though you have made a decision there to try Sulf as and when you go down the meds route. If it helps there have absolutely been people here whose disease is under control on Sulf alone.<\/p>

You do not need to apologise for the long post it was useful and not posted in the wrong place at all.<\/p>

@JenHB<\/a> I am glad you are getting a called back from Rheumatology and are still being monitored. It could be that your vaccinations are linked, but maybe not it could be a coincidence. I hope yours and OP's have been noted 'somewhere' in case it is more widely significant. I hope things improve for you soon and you get some answers ((()))<\/p>","bodyRaw":"[{\"insert\":\"Aha! I see your concerns now \"},{\"insert\":{\"mention\":{\"name\":\"Axe09\",\"userID\":119206}}},{\"insert\":\" \\nThing with RA (and most inflammatory Arthritides) is they can be like that appear to be gone and all is well for months some people even years. It's tempting to think it's all over, but it's that thought of long term damage you might be doing. As you say an elbow is very useful to have!\\nCRP (inflammatory markers) is down at the moment, but if you flare again it will go back up. Inflammation is still visible on ultrasound. Hmmm....your consultant won't want you to risk long-term damage to your joints.\\nHow quickly does she want a decision? Is she happy to delay until your next review? . It sounds as though you have made a decision there to try Sulf as and when you go down the meds route. If it helps there have absolutely been people here whose disease is under control on Sulf alone.\\nYou do not need to apologise for the long post it was useful and not posted in the wrong place at all.\\n\"},{\"insert\":{\"mention\":{\"name\":\"JenHB\",\"userID\":118878}}},{\"insert\":\" I am glad you are getting a called back from Rheumatology and are still being monitored. It could be that your vaccinations are linked, but maybe not it could be a coincidence. I hope yours and OP's have been noted 'somewhere' in case it is more widely significant. I hope things improve for you soon and you get some answers ((()))\\n\\n\"}]","format":"rich","dateInserted":"2021-11-17T07:24:24+00:00","insertUser":{"userID":10897,"name":"frogmorton","url":"https:\/\/community.versusarthritis.org\/profile\/frogmorton","photoUrl":"https:\/\/us.v-cdn.net\/6031919\/uploads\/userpics\/QH8MX6CX8L1L\/n8WQM6ATFY05V.png","dateLastActive":"2023-01-11T20:05:09+00:00","banned":0,"punished":0,"private":true},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":false,"showPostLink":false,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/comment\/687177#Comment_687177","embedType":"quote"}"> https://community.versusarthritis.org/discussion/comment/687177#Comment_687177

Hi Toni

您会说我的症状（住院）是典型的坏爆发吗？这发生了什么？我忘了补充说我的BP非常低，温度很高。在检查了我的血液检查结果后，我非常差，并认为最糟糕的情况会发生，是的，它几乎使我脱颖而出！我的白细胞计数很低。一个月后，除抗CCP外，我所有的血液结果都回到了正常状态，所以这有点奇怪。我的全科医生建议我在黄牌系统上向MHRA注册它，以防它是AZ疫苗的副作用。我有兴趣知道是否有许多其他人也有类似的问题。

CRP在反CCP读数时波动的RA是否正常？反CCP阅读是否有可能波动，或者一旦积极就会保持积极？

I have to see my Consultant on the 07 December. The purpose of the next appointment is to decide which med I feel comfortable with and to begin taking it. Every time that I see her she says it feels like a medical assessment as I always have lots of questions.

Frogmorton · 18. Nov 2021, 06:32

好吧，这对你来说是新的@Axe09so you will have lots to ask your Rheumatologist at the moment.

CRP can definitely fluctuate I remember when my youngest had leukaemia her bloods were done every day and her inflammation/infection markers used to even warned us that she was going to be seriously ill. In her case neutropenic sepsis In our case likely with a flare.

No-one ever mentions anti-CCP once it is positive again they just seem to look at things like CRP and examinations to assess disease activity. Do find out what you can very interesting!

Not everyone ends up hospitalised, but of course some do. In my case I feel like I just woke up one day 'stuck in position' unable to straighten my legs at all. Looking back there had been clues short period of swelling and a high(ish) temperature. Flares vary so much, but most of what you describe isn't untypical, high temperature I imagine very very tired? and swelling and pain, joints very stiff. My first flare lasted about 6 weeks and tapered off. Since then of course I have been on medication and flares are rarer and seem to be shorter in duration.

绝对应该在黄牌上报告有关AZ疫苗接种100％的黄牌，他们需要此类信息，他们将决定是否相关。

Good luck on the 7th Decmake sure you let us know what you decide.

CCM · 18. Nov 2021, 11:07

40年前,我是一个适合当我佤邦和活跃的男性s given my RA diagnosis. Less active now, but who isn't at 73. My point is that there will be ups and downs, but life is still there to be enjoyed. Relish the things you can do, but do not regret the things you can no longer manage.

我一直在通过药片和注射甲氨蝶呤和Sulfasaline. I prefer the Sulfasalazine, which in my case is combined with Hydroxychloroquine.

Good luck

CCM

Axe09 · 19. 2021年11月12:44

40 years ago I was a fit and active male when I was given my RA diagnosis. Less active now, but who isn't at 73. My point is that there will be ups and downs, but life is still there to be enjoyed. Relish the things you can do, but do not regret the things you can no longer manage.<\/p>

I have been on Methotrexate by pill and injection and Sulfasaline. I prefer the Sulfasalazine, which in my case is combined with Hydroxychloroquine. <\/p>

Good luck<\/p>

CCM<\/p>","bodyRaw":"[{\"insert\":\"40 years ago I was a fit and active male when I was given my RA diagnosis. Less active now, but who isn't at 73. My point is that there will be ups and downs, but life is still there to be enjoyed. Relish the things you can do, but do not regret the things you can no longer manage.\\nI have been on Methotrexate by pill and injection and Sulfasaline. I prefer the Sulfasalazine, which in my case is combined with Hydroxychloroquine. \\nGood luck\\nCCM\\n\"}]","format":"rich","dateInserted":"2021-11-18T11:07:19+00:00","insertUser":{"userID":114714,"name":"CCM","url":"https:\/\/community.versusarthritis.org\/profile\/CCM","photoUrl":"https:\/\/us.v-cdn.net\/6031919\/uploads\/userpics\/H7BFGI11GBKF\/n0VD775RPLGZ8.jpg","dateLastActive":"2022-12-29T10:45:51+00:00","banned":0,"punished":0,"private":false},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":false,"showPostLink":false,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/comment\/687225#Comment_687225","embedType":"quote"}"> https://community.versusarthritis.org/discussion/comment/687225#Comment_687225

That's good advice, thanks!

Arthuritis · 22. 2021年11月10:29

@Axe09 @CCMI am also recently Dx’d, in October, but doc suspected it in july, and thought the trigger might have been excessive excercise walking in Sept 2020, resulting in unbearably painful feet which resolved, but distance walked steadily declined, until one morning in july I woke with painful stiff hands and feet, which did resolve, and i stayed in denial, esp after a hospital doc told me i didn’t have it after pushing and pulling my hands, even though i explained i struggled with taps. In denial I stayed until my right index finger tendon was on fire and finger unmovable. Then saw private rheumy in Oct and bloods came high +ve. He wanted me to take mtx immediately but i was hesitant as these drugs need careful monitoring and i had did’t have funds for a follow up. I am hoping the serology will get me referred to an nhs rheumatology programme soon. I took the hydroxy prescription though.

JenHB · 6. 2021年12月19:19

in answer to@Axe09- 9月，我的血液显示出高的类风湿因素，因此我的转诊！她认为流感刺刀可能引起了一些肌肉僵硬，因为我膝盖上最多注意到，由于我的肌肉张力大幅损失，而且我也没有明显的肿胀或疼痛。我有电话约会开始，只是为了检查情况如何。

Axe09 · 7. Dec 2021, 11:41

Hey@JenHB

I guess they can't be too worried if they are leaving it util January? A good sign I hope

我今天下午要预约药物。尽管我的诊断以及如何发生，但仍然担心将它们带来太多变量。️

让我们了解您的进度。

Arthuritis · 7. 2021年12月，19：01

@JenHB嗨，您知道您的ACCP级别是多少？

请不要仅仅因为您的全科医生具有自由放任的态度，这意味着可以或不认真。这只是意味着您的全科医生不知道NHS对此的最佳实践指南，“努力迅速”并将其视为紧急，因为限制损害的最佳前景是在扩散之前提前解决它，并在不可逆的伤害下变得很重要。我最终向我的NHS诊所教育了OA＆RA之间的差异，并从患者视频中转发了一个链接，可以准确地描述了差异，并且缺乏对RA和紧急治疗需求的认识。

他们很亲切，可以承认手术中的所有临床医生都会受益于观看。对我来说太晚了，因为我在7月份报告了我的症状，而且他们没有注意到，直到我最终消耗了所有的积蓄，试图看到一个私人风湿病，他迅速诊断出我接受了ACCP，RF和ANA测试的诊断我有一个非常激进的形式。

I will push to get the following tests regularly from my GP:

ACCP

RF

安娜

C-RP

ESR

您可能想对此进行一些研究，但最重要的是，您的全科医生认真对待它，因为它是。GO越早解决，您的前景就越好。

CuriousSquirrel · 14. Dec 2021, 20:34

Hello@Axe09, long post coming up, I hope it's helpful...

I have had an experience that is spookily similar to yours! I had the AZ vaccine back in March and two days later I found I couldn't straighten my elbows. Pain followed shortly after. Next I got pain in my jaw and it became misaligned. Then pain in my hips and lower spine, and later swelling in my knees and ankles. My diagnosis is currently psoriatic arthritis with a question mark. Ankylosing spondylitis was also mentioned, but everyone was a little baffled so they can't decide exactly what kind of arthritis it is yet.

我是女性，30岁（现在31岁）在此之前没有症状，进行了很多症状，从事身体工作，没有超重，没有关节炎的家族史。大约6年前，我患有极度温和的牛皮癣。

医生测试了我的不发炎标记，并订购了我的肘部X射线，并告诉我我没有关节炎。（CRP 14，ESR 26，没有X射线关节损坏的迹象）。我设法进行了生理转诊，生理学将我转介给风湿病学家，他们下令进行超声波和MRI。它们都表现出非常明显的炎症，随后我被诊断出来，并开了eToricoxib和甲氨蝶呤。

Because I am 99% sure all of this was caused/ triggered by the vaccine, I have also been terrified of starting the medication. The way I have been spoken to when I voiced my belief that the vaccine caused this has eroded my trust in the healthcare system to the point where it's almost non-existent.

您对疫苗的担忧是否受到任何人的认真采用？我一直被告知有“没有证据”疫苗可能引起这一点，这只是“巧合”。每天，我都会听到或阅读一些使我更确定疫苗引起或触发的东西。

无论如何，我得到了MTX或SSZ的选择，并且对甲氨蝶呤更加害怕，因此将选择磺胺丙嗪，但是在阅读了各种经验并权衡危险，有效性，副作用等之后，我决定让甲氨蝶呤尝试一下。我选择注射，因为我读到某些副作用的可能性较小。我在MTX上一个月后到目前为止的经验：

Day after injection #1 (10mg): The 'hangover' I had heard so much about. Headache, very slight nausea, extremely fatigued. The next day I was OK.

注射后的第二天（10mg）：罚款

Day after injection #3 (15mg): Same hangover as after first dose

Day after injection #4 (15mg): Fine (even after an all-nighter for a rave a couple of days before!)

到目前为止，我只有一次血液检查，但结果没有任何问题。我本周还有另一个。

自从我开始MTX以来，我一直在连续一段时间，风湿病学家似乎并不关心，但这是血腥的烦人（请赦免双关语。）这是我到目前为止唯一注意到的唯一连续的副作用。

I am so sorry to hear about what's happened with you. It's such a shock and such a bizarre experience to suddenly be thrown into this with no warning. I am also new to this and definitely can't provide expertise but feel free to message me any time if it would help!

Frogmorton · 15. 2021年12月，06：34

Get that period checked out@Axe09为什么没有停止？

这需要确定。

小心

Axe09 · 16. Dec 2021, 18:00

I read that MTX can affect your ovaries? It's not my field but I would say it definitely needs discussing with the Consultant sooner rather than later!

Which Meds?

注释

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