Corona Virus/covid 19

dreamdaisy

It's reached my neighbourhood. Staying indoors is a very good plan indeed. DD

louisealice

你好，

像连锁店中的其他一些人一样，我是该论坛的新手 - 特别是寻求对政府建议的一些实用指导和理解，因为它影响了关节炎患者。

Want to thank everyone for all their comments but especially

Mike1 on Mar19th - with the link on the difference between social distancing and isolation

and

Sandp27 on Mar 19th with the link to the advice to Rheumatology services - Table 2 with the list of immuno suppressive medicines is brilliant - the first time I have seen my biologic Sarilumab mentioned.

这是明确的。

again thanks to all

Louise

Sandp27

No worries Louise.

Found this as well on the NRAS website. Interesting comment about conventional DMARDs. This chimes a little with the advice from my Rhem Nurse. Though she was wrong about not being in the vulnerable group.

- Is it the RA or the immune-suppressing medications that heighten my risk?

This is a difficult question to answer because there is such a spectrum of expression of RA. But broadly speaking, RA does increase vulnerability and particularly if it is active. Treatments such as methotrexate and other conventional synthetic DMARDs are generally not immunosuppressing when used at the right dose to control someone with RA. We know that steroids, biologics, biosimilars and JAK inhibitors may cause immunosuppression even though they help control the disease.

成熟的人

我要笑的时候,我去了我们当地的国家公园which is huge for a walk to get exercise and surprise surprise they closed it today. Now I understand they are trying to protect their staff but surely we are fairly safe outside as long as we are sensible? Considering the situation in the shops I would have thought this was far healthier. Anyway I'm pretty much doomed as the wife works for the local Council and now that they cannot do their jobs in the community she has to stay in the the offices of the council building with 600 odd others so if I'm going to catch it, it will be from her. What's frustrating is she could be working from home as they have laptops for that but her boss is young and a bit indecisive so won't let his staff do this even though her previous boss used to allow it and loads of others in the building are. So it's pretty inevitable that I'm going to catch it but I'm fairly fit so I just hope that stopping the meds works. Stay safe all

silverfoxxxx

与新announcement does that include many of us, immunosuppressed, or is it drugs over a certain strength, I’m currently on Leflunomide going onto Imraldi on Tuesday.

Nikki8

嗨，46岁的RA在这里，目前由于令人讨厌的胸部感染而没有服用我的羟氯喹或Meloxicam，我两周前停止服用它们，目前我正在接受强力霉素。对我是否应该自我隔离12周感到困惑？目前也有耀斑，为自己感到非常抱歉。无法在顾问办公室中抓住任何了解的人。shlukd我立即恢复我的药物吗？等到我的感染流失，我已经完成了抗生素？那里的信息是如此不清楚，我敢肯定我通常没有高风险，但现在有很大的风险。预先感谢您提供的任何值得赞赏的建议:(

Brynmor

Hi@Nikki8and welcome to the Versus Arthritis online Community.

I'm sorry to hear you have a nasty chest infection and have had to give up your course of hydroxychloroquine at such a worrying time. Its not surprising that this has given rise to a flare

The 12 weeks isolation is for those who areCovid-19极度脆弱and the NHS will be contacting those affected directly to provide further advice.

Public Health England has a full page which describes those who are classed as extremely vulnerable:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-从199年开始的人

Our website also has additional material that provides information and links regarding thecovid-19virus for support of those who are also at risk:

//www.wfysxh.com/news/2020/march/coronavirus-covid-19-what-is-is-it-in-is-where-where-where-to-go-for-information/

根据周末的活动和公告，我们的信息将于明天再次更新。

Do stay and keep in touch and let us know how you get on.

All best wishes

Brynmor

Sandp27

More very useful guidance here for whether a Rheumatology patient is to be classified as high, moderate or low risk. A high risk patient is advised to go into the 12 week isolation period and will receive a letter from the NHS.

https://www.rheumatology.org.uk/Portals/0/Documents/Rheumatology_advice_coronavirus_immunosuppressed_patients_220320.pdf?ver=2020-03-22-155745-717

silverfoxxxx

Hi,
Looking through the pdf from Sandp27 above it says ‘under control’ Is moderate risk, but there seems to be no advice for people who aren’t under control, my inflammatory arthritis hasn’t been under control for over 2 years now so we’re would I sit, and I also worry that the Rheumatologist wouldn’t take this into account as you can never get hold of them to pass on information, they assume they’ve given you a drug and your ok but that isn’t always the case, it’s a minefield currently and no one seems to be any help, I tried again today to contact a specialist nurse and again no nurses to answer messages, that’s 9 or 10 weeks now that I haven’t been able to update anyone about my situation.

This is also a good list of arthritis types and medication and where they sit.

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/clinical-guide-rheumatology-patients-datients-v1-19-march-2020.pdf

silverfoxxxx

Also just found this, not sure why all these PDF’s are available just through a google search, this is information for Rheumatology patients.

https://www.dchft.nhs.uk/patients/departments-P-Z/rheumatology/Documents/Coronavirus%20Information%20for%20Rheumatology%20Patients.pdf

zingiber

除了SANDP27的PDF（非常感谢！），现在添加了以下补充分数图。我认为我在这里很厚，因为它的得分与原始PDF的得分不同，即我在甲氨蝶呤和羟基氯喹，所以在PDF中，我属于“中等”类别，但是得分图似乎使我恰好'in just'社会距离类别，但与该国其他所有人不同吗？我错过了什么吗？他们是在谈论以不同的方式进行社会疏远吗？https://www.rheumatology.org.uk/portals/0/documents/covid19_risk_scoring_guide.pdf?ver=2020202020202020202020-23-165634-597

silverfoxxxx

looking at the chart, where would I sit with having both my knees steroid injected less than 4 weeks ago? and on Leflunomide, and why aren’t we being contacted with this information?

dreamdaisy

It is shameful that, at this time of national and global crisis, many people are not receiving individually tailored guidance from the Government and other official sources and are thus being forced to try to work out for themselves what groups into which they might or not fall. Trying to work out what one should or should not be doing is similarly tricky, judging by the pictures in the media after the first sunny weekend of the year our society is struggling with the concept of behaving responsibly for the sake of others.

是的，美国自动免疫者服用令人讨厌的药物，但剂量要比具有各种癌症的药物低得多（例如，直接进入1000毫升的1000毫升注射到脊柱）。事实是，我们受到免疫抑制，但并非如此，事实上，我们有资格获得免费的流感刺戳，因此，事实上，我们需要比健康的HOI-Polloi更加谨慎。但是，与患有癌症，CF，糖尿病等的人不同，我们只有关节炎，这是一种疾病的无杀手。

我不认为至少十二周的时间被限制在军营的想法中，而是理解其背后的原因。我对可能导致死亡的替代方案的迷恋更加迷恋，在我的情况下，我会赢得70/30的赔率。话虽如此，我已经玩了二十年来一直在玩免疫抑制的游戏，因此已经习惯了它在我的社交生活中的狭窄（并放在我的工作生活上）。对于那些必须上班的人来说，他们要么是关键工人，要么是在超市工作等，他们的风险更大，这就是为什么其他所有人都必须对社交疏远而不像普拉特更加认真。由于即将发生的事情，NHS需要尽可能整洁。

Judging by the messages flying round on my local social media, for many of my neighbours it's all a bit of a hoot; no school, no commuting, working from the back bedroom, getting the whole family to walk a mile in the back garden at 5pm, wot larks, Pip. One neighbour is incensed that our garden waste collections have been stopped by the Council, apparently this is not on as she pays her CT. You have to wonder. DD

Brynmor

Just updating this thread with a link to the latest information published earlier today on our website:

风湿病患者有关COVID-19的其他信息

//www.wfysxh.com/information-for-rheumatology-patients-about-covid-19/

lucybadger

Thats useful information thanks Brynmor. However, can I check, does this mean if I only take one TYPE of immune suppression tablet and/or injection I am low risk? The chart seems to be the same as one posted above but missed this section on the bottom:

"**** Co-morbidity includes: age >70, Diabetes Mellitus, any pre-existing lung disease, renal impairment, any history of Ischaemic Heart Disease or hypertension. Patients who have rheumatoid arthritis (RA) or CTD-related interstititial lung disease (ILD) are at additional risk and may need to be placed in the shielding category. All patients with pulmonary hypertension are placed in the shielding category."

Which suggests that RA patients are all at higher risk? I'm confused!

silverfoxxxx

@Lucybadger, I have this same problem, the information isn’t clear and rheumatology don’t seem to want to answer any of my questions.

Brynmor

@lucybadger: "However, can I check, does this mean if I only take one TYPE of immune suppression tablet and/or injection I am low risk?"

图表得分2 points如果您服用多种免疫抑制：

Are you ontwo or moreimmune suppression tablets and/or injections (other than sulfasalazine or hydroxychloroquine)? = 2 points

The extract from the other chartis confusing:

"**** Co-morbidity includes: age >70, Diabetes Mellitus, any pre-existing lung disease, renal impairment, any history of Ischaemic Heart Disease or hypertension. etc... "

This note is referring to theother chartsection as follows:

Any one or more of these: age >70, Diabetes Mellitus, pre-existing lung disease, renal impairment, history of ischaemic heart disease or hypertension = 1 point.

This corresponds to the same section on our chart:

Do you have any of the following problems: diabetes, lung problems, heart disease, high blood pressure?

或even if you do not have any of these problems, are you over 70 years old? = 1 point

这并不涵盖所有患有RA的人。您将需要添加分数以确定您的风险水平。

Hope this helps make things a little clearer: the two charts are essentially the same - ours was compiled in conjunction with British Society for Rheumatology and NHS England and published subsequently to the first one from BSR.

Brynmor

lucybadger

@Brynmor非常感谢澄清。它年代eems I am not as high a risk as originally thought as I just take Methotrexate and (currently, touch wood) have no other health issues.

Brynmor

Latest additional informationhas now been published on our website:

Rheumatology patients and COVID-19 - learn more about the risk levels

COVID-19 advice for people taking steroids

Brynmor

Mike1

我绝对烟 - 在康沃尔郡，我们有一家名为Treliske的主要医院，我知道今天的一名护士，目前有27名冠状病毒患者来自该县。总理告诉所有人前几天留在主要住宅中，但这19个是自私的第二个房主，他们决定做自己想做的事。他们不仅将房屋价格提高到了当地人的范围之外，而且现在他们将虫子降低并感染了当地人口并带走了我们的NHS资源。

louisealice

Brynmor

many thanks for the link into the scoring table - very helpful and clear

Louise

Airwave!

I read on the BBC Qand A that there are anecdotal question marks over the loss of taste and smell associated with the virus, nothing proven or confirmed.

Back to my book and thinking of what to do next.

its a grin, honest!

dreamdaisy

We have the same in Suffolk, Mike. Lots of second home owners cluttering Southwold and Aldeburgh, many complaining that there are not enough supplies; a long break at the seaside seemed like a plan until the pubs and restaurants were shut.Burger off back to London, twerps. There are more doctors, better and bigger hospitals, all of which might bcome necessary. DD

Michelleho

Confused by the scoring table. I’ve recently been diagnosed with rheumatoid and only been on the methotrexate tablets for a month. I don’t have any other health issues and received a letter this morning saying I need to stay in for 12 weeks and keep away from my family in the house. I really didn’t think I would be that at risk not sure how we will manage this with 4 of us in the house

Yvonneh

Hi Michelleho,

It's great to meet you I'm glad you have a diagnosis and have started medication for rheumatoid arthritis, I hope you weren't waiting too long for treatment to begin.

Here's our leaflet regarding RA

//www.wfysxh.com/about-arthritis/conditions/rheumatoid-arthritis/

Usually for those only taking methotrexate the risk is confined to social distancing, so perhaps it is because you are new to taking the medication. It could set your mind at rest to ring your rheumatology department or rheumy nurse if you have been given one just to clarify.

Unfortunately if that is the case then either all the family would need to isolate themselves or you would need to spend the time separated from them, but if that is the way to be sure you are safe at the end of this virus then that is the way it will need to be.

Please let us know as soon as you have clarified this as it may well be relevant to others in your situation, in the mean time see if you can offer any help with hints and tips on managing at this time or visit our chit chat category for some lively conversations

小心

伊冯