多痛性风湿病
西尔维亚
成员Posts:6
您好，我叫Sylvia（71），圣诞节前一周被诊断出患有Polymialgia Rheumatica。我的病情是通过服用类固醇加其他药丸来抵消副作用（即骨丢失和胃部问题）来管理的。我最担心的平板电脑是我每周服用一次的Alendronic Acid，因为这也会引起副作用！我只服用了一个！任何评论都感激地收到！新年快乐！
西尔维亚W。
西尔维亚W。
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(删除用户) Posts:3,636嗨，西尔维亚，
欢迎to the forum.
I can understand your concerns when starting on medication. I don't have personal experience of Alendronic Acid, but there are lots of people on here with a vast range of experiences of arthritis, so hopefully someone will be along soon who does.
Here is a link to the information about Alendronic Acid on the NHS website:
https://www.nhs.uk/medicines/alendronic-acid/
Also, in case you haven't already seen it, or read similar info, I'm posting a link to a section about polymyalgia rheumatic on the Versus Arthritis website. Hope it may be helpful:
//www.wfysxh.com/about-arthritis/conditions/polymyalgia-rheumatica-pmr/
保持联系，让我们知道您如何使用药物以及治疗状况，因为您有诊断和治疗。
With very best wishes,
安0 -
StickyWicket 成员Posts:26,975你好西尔维亚，也欢迎我
For some reason people with PMR don't seem to hang around on here too long. I interpret that as a good sign
在最初的震惊之后，他们能够在增加药物的情况下相当正常地继续生活。
I understand your concerns about alendronic acid. The instructions are quite scary, aren't they? (Staying upright etc.) But we've had several people on here who take it and I don't remember anyone having problems with it other than mild nausea. The reason for it is to counteract the bone loss which steroids can produce and, as such, it's a very good thing. You have enough on your plate dealing with PMR without having osteoporosis thrown into the mix.
我希望您发现药物制度有帮助。有些人似乎能够像诊断前一样继续进行，但休息也很重要，因此如果不能，请不要觉得您会屈服。持续时，这是一件令人讨厌的事情。0 -
dreamdaisy 成员Posts:31,520Hello, I am sure your diagnosis has come as a shock, especially if you have been familiar with good health and a body that works as it should: how very dare it turn against you, yes? I took alendronic acid for at least a couple of years and found it a blasted nuisance in comparison to my other meds. Once I weaned myself off the steroids (I don't have PMR, I was selected for psoriatic and osteoarthritis) I was able to stop the AA, hurrah. I began arthritis when I was 37 and am now 59.
It often made me feel queasy for a few hours post-ingestion which I countered with proper coca-cola and distraction so I wasn't sitting there focusing on how yucky I felt. Having been dependent on medication to enable life since the age of twelve I don't think too much of what I am taking, when starting a new med I read side-effects leaflet once then put them away. They contain warnings rather than guarantees, the aim of the drugs is to improve the quality of life and, more often than not, they do. I wish you well, please keep in touch and let us know how you are getting on. DD0 -
西尔维亚 成员Posts:6dreamdaisy写道：Hello, I am sure your diagnosis has come as a shock, especially if you have been familiar with good health and a body that works as it should: how very dare it turn against you, yes? I took alendronic acid for at least a couple of years and found it a blasted nuisance in comparison to my other meds. Once I weaned myself off the steroids (I don't have PMR, I was selected for psoriatic and osteoarthritis) I was able to stop the AA, hurrah. I began arthritis when I was 37 and am now 59.
It often made me feel queasy for a few hours post-ingestion which I countered with proper coca-cola and distraction so I wasn't sitting there focusing on how yucky I felt. Having been dependent on medication to enable life since the age of twelve I don't think too much of what I am taking, when starting a new med I read side-effects leaflet once then put them away. They contain warnings rather than guarantees, the aim of the drugs is to improve the quality of life and, more often than not, they do. I wish you well, please keep in touch and let us know how you are getting on. DD
谢谢您的所有答复。是的，这确实是一种震惊，以前很健康。我们刚从爱丁堡的几天里回来，乘汽车和火车旅行，并在那里走了很多步行，将我的僵硬和酸痛的肢体放到所有旅行中，并过度了。我忍受了一个月，然后才看到我的全科医生。副作用清单非常可怕，所以我倾向于忽略它们，直到我怀疑我可能会经历一个！会保持联系。西尔维亚W。0 -
dreamdaisy 成员Posts:31,520The list of possible side-effects does make for unsettling reading but, as I remind myself, they are there to protect the manufacturer from law suits: if you are warned that one in ten thousand turns purple, and you are that one in ten thousand, then you're proving the statistic is all.
This must be tough and I do empathise. An old proverb states 'Good health is the crown on a well man's head but only a sick man can see it.' How very true. Another quote I like is 'The body itself is a disease.' I've proved that one since birth.DD0 -
西尔维亚 成员Posts:6StickyWicket写道：你好西尔维亚，也欢迎我
For some reason people with PMR don't seem to hang around on here too long. I interpret that as a good sign在最初的震惊之后，他们能够在增加药物的情况下相当正常地继续生活。
I understand your concerns about alendronic acid. The instructions are quite scary, aren't they? (Staying upright etc.) But we've had several people on here who take it and I don't remember anyone having problems with it other than mild nausea. The reason for it is to counteract the bone loss which steroids can produce and, as such, it's a very good thing. You have enough on your plate dealing with PMR without having osteoporosis thrown into the mix.
我希望您发现药物制度有帮助。有些人似乎能够像诊断前一样继续进行，但休息也很重要，因此如果不能，请不要觉得您会屈服。持续时，这是一件令人讨厌的事情。
我的一个姐妹已经拥有PMR十年了，而且她的纤维肌和糟糕的事情又增加了并发症。我的妹妹患有骨质疏松症，并被开处方艾伦丁酸，她无法忍受，因此被穿上了她的其他东西。因此，也许我对自己服用时感到非常焦虑。我明天应该服用第二片。时间会说的！
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daffy2 成员Posts:1,636我的一位同事的PMR花了大约4年的时间来定居 - 她没有逗乐，因为医生向她保证，这将不超过2个。
Regarding the OP drug, any side effects such as nausea may well settle as you carry on taking it, otherwise it may be worth asking about the liquid alternatives to the AA tablets which are now available to see if they are better for you. It isn't the only OP drug though and if you find things don't settle and you can't tolerate it then you can go onto another, as your sister did.0 -
西尔维亚 成员Posts:6谢谢你daffy2。
When you're 71 four years seems a long time but we shall see how I get on. I wasn't told my PMR would definitely clear up, just that I might have a relapse once I was weaned off the steroids.
I really also need to look into building up my wasted muscles as I have lost weight as well but I don't want to overdo it and the strength in my right arm and hand is weak in the mornings until the steroids kick-in. I have simple exercises to do via the Arthritis Care leaflet but need to find out more going forward.0 -
西尔维亚 成员Posts:6Hello everyone! It's been well over a year since my last post. I had been worried about taking the Alendronic Acid tablets but luckily I've been ok on them.
我现在每天要降低2毫克的类固醇，尽管尝试过并且未能降低到1mg。医生向我保证，这仍然是早期的，通常需要18个月到2年才能使自己燃烧出来。我确实觉得我需要建立手臂肌肉，但不想过分，发现我又回到了正方形！很快就会见我的医生。T4591 Sylvia W0 -
dreamdaisy 成员Posts:31,520Hello again.
我花了一年的时间去口服类固醇，每三到五个星期减少0.5或1毫克。到最后，我发现我只是忘记了将它们带走，因为我平时的中等程度又又少了。几个月后，DEXA扫描证实我做了正确的事情，因为我的骨密度增加了4％。（我已经放弃了AA，那是那种药丸是多么的faff。）我想念那种假的感觉，但我知道生活比身体健康更多。
祝你好运，在2021年见。DD0
在最初的震惊之后，他们能够在增加药物的情况下相当正常地继续生活。
谁在线上
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Tigerfeet