Coronavirus letter

[emma88]

Hey everyone hope you are all well as can be expected! I was just wondering if anyone knows if they said when the letters would arrive by if you are someone at high risk or did they not say? I missed the majority of what was said yesterday x

[Eiram50]

To the best of my knowledge, from tomorrow .

[KittyJ]

By the 29th I think.

[emma88 in reply to KittyJ]

Okay. Thank you ☺️ x

[KittyJ in reply to emma88]

Have you seen this Emma?

rheumatology.org.uk/Portals...

[emma88 in reply to KittyJ]

Just had a look its confused me a bit haha. Ive just started biologics a week ago as ive had very high flares on the scale thing they provide think i was at 5.8 or something close that is that report classing that as high risk as it didn't say the brand of the biologic drug sorry if im coming across as silly and maybe asking stupid questions haha if so as ive only been on them just over a week now would it still class as high risk if that drug does come under high risk

[KittyJ in reply to emma88]

If you’re only taking a biologic and no other immunosuppressives or have any comorbidities then you should be social distancing

Here is the risk stratification😊

rheumatology.org.uk/Portals...

[dawkin_S in reply to KittyJ]

Hi KittyJ, I am finding the info a bit confusing, because on the score chart I would get just 1 point, as I am on methotrexate and hydroxychloroquine, but on the stratification guide I am in the middle section. I'm finding it quite stressful as I work in a food shop, and am not sure if I should stay home or go back to work. I appreciate a lot of you guys are in the high risk category, so have greater worries than me, of course!

[KittyJ in reply to dawkin_S]

Have you spoken to your employer about your concerns ? Are they ensuring social distancing? If you’re unsure I would speak to your doctors for guidance. I’m not a medic, I just shared the criteria they are using 😊

[dawkin_S in reply to KittyJ]

Thanks KittyJ, I really appreciate you sharing the info with us. Well he's been good at me being off so far, but this was when I was going by the initial recommendations from the NHS (if you are told to get flu jab for medical reasons, you are at increased risk) and the NHS clinical guidelines. Now this new info has left me unsure. TBH, I am scared of the risk in going back to work. I hear customers are being spaced out to 2m, but it's impossible for staff to be as there is not enough space behind the counter. I suppose I need to try and ask my Rheumatology Nurse. Thanks for listening.

[KittyJ in reply to dawkin_S]

That’s ok, sorry I couldn’t be more help 😊

[Longlocks]

I had a text today confirming I am in the “at risk” group so that’s me in for the next 12 weeks at least. I’m just on Benepali (entenercept) 😢😳

[samgtfc in reply to Longlocks]

I'm also on benapali plus methotrexate tablets not received any letter yet though

[Longlocks in reply to samgtfc]

I think I got a text as it’s all new to me I’ve only done my 2nd injection. Healthcare at Home have used SMS to arrange times for delivery and nurse visits. I would imagine I’m on an easy database. I’m sure you will be notified. This is my text

NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.

Read more advice about staying safe at home.

gov.uk/coronavirus-extremel...

We will send you more messages with information.

To opt out reply STOP

[samgtfc in reply to Longlocks]

Ok many thanks 👍take care

[Longlocks in reply to samgtfc]

And you stay safe x

[emma88 in reply to Longlocks]

Ive just been put on baricitinib a week ago so not sure if im classed at high risk had no txt or letter yet so will have to see. Take care of yourself ☺️

[KittyJ in reply to Longlocks]

Longlocks, Are you being told to stay in completely ie shielding just being on a biologic? No other immuno meds or comorbidities?

[emma88 in reply to KittyJ]

I havnt been told anything. Im on folic acid methotrexate hydroxychloroquin and now baricitinib

[KittyJ in reply to emma88]

The reply was to long locks, sorry I’ll edit it 😊

[emma88 in reply to KittyJ]

Sorry i mis read it was my fault haha

[KittyJ in reply to emma88]

I think replies just come up out of order sometimes, not your fault 😊

[RA2002 in reply to Longlocks]

I received one of those texts around about the same time as you did. Then on Friday 27 I received a much more detailed letter from my hospital with the same recommendation but with lots of additional advice and instruction. This is because I take Etanercept and Methotrexate. Frankly, I feel absolutely fine (and hope you do too).

[Hidden in reply to samgtfc]

I haven’t either erelzi (entercept) and methotrexate

[Eiram50 in reply to Longlocks]

I received text

On Friday but expect letter any time from tomorrow

[Vonnie10 in reply to Longlocks]

Oh my god I wil. Be done for murder

[Ms-D in reply to Longlocks]

Im due to start that next week. How is it going for you?

[medway-lady]

I got the text just now as extremely vulnerable. So house and garden for at least 12 weeks. Had to register but fortunately well organised so no problems but a clearly thats now it for the duration. I hasten to add although I have RA this is down to CKD.

Well got the books, got some netflix to watch, got some chocolate, got a garden, got FaceTime and got a lot to be thankful for.

So turning off virus news and staying positive.

[Longlocks]

Looks like it. That’s how I’ve read it x

[Paula-C]

If you haven't received a letter by the 29th you should phone your GP or hospital.

[HappykindaGal]

The letters are going to 1.5 million people who have had transplants, have cystic fibrosis or certain blood cancers. RA isn’t on that list so unless you have several issues, it’s unlikely you will receive a letter.

[MaryTH]

I received a text yesterday afternoon and told to expect a letter by the 29th March. Apart from RD I have quite a few other conditions that put me in the “At Risk aground” I have been self isolating for just over a week apart from a walk for an hour with a couple of my neighbours. I now have to rely on my daughter to get my shopping. Has anybody tried to get a delivery slot, I have found it impossible. Take care everyone and stay safe xx

[Ruby2002 in reply to MaryTH]

Are you an Ocado customer? They are issuing a few slots but you have to wait for an hour or so in the virtual queue. They aren’t taking new customers though unfortunately. Stay safe.

[CarolineGN in reply to MaryTH]

Hi Mary

Sainsbury’s say they will prioritise a delivery for slot for people who are vulnerable (sorry hate that word!). On the website it says to call them on 0800 328 1700.

[MissMinto in reply to CarolineGN]

It’s been constantly engaged for the last 2 days ☹️

[MaryTH]

Should have said the “At Risk Group” xx

[Annemarie24]

Alot of people are asking if they will get a later, but i just wanted to add that there is a danger level for everyone.letter or no letter it still says on the NRAS that any one with rheumatoid arthritis is high risk and should isolate . I dont know about all ur situations but my immune system was rubbish befor i started with rheumo so i am going of the advice on the NRAS untill i have my phone appointment with rheumo on Friday, stay in stay safe

[Edina123]

I've just had a text message to say I'm at risk and to isolate for 12 weeks I'm on my second month of baricitinib I also have Asthma The rheumatology nurse insists I go to the hospital for a blood test I am terrified of going there Theres a lot of mixed messages

[emma88 in reply to Edina123]

Will they not allow you to go to your GP for bloods? I always have mine done at my doctors or is it bloods that have to be done at hospital? X

[Nuttyshirlz]

I’m not sure what group I’m in or how long to stay home. Last week my Gp said if you get invited for flu jab you in at risk but obviously it’s changed again lol so I’m waiting then will ring Gp on Friday. See if they changed mind again 🙂

[Longlocks]

rheumatology.org.uk/Portals...

hope this helps xx

[Balletmum71]

I'm on Benepali and steroids , and a steroid inhaler as they ( respiratory clinic ) feel I have asthma .

I also had pneumonia in October which was very slow to clear and then got another chest infection in my right lung .

Even if I dont receive a letter I feel that I should keep myself to a minimum with regard to going out .

I've only just started back on Benepali .

I think I will have a look at the lung organisations to see what they say about steroid inhalers being a point towards being at risk .

[Hidden]

I got a text yesterday to say I must stay in the house for the next 12 weeks as I am at high risk of severe illness if I get the virus. It says I can open a window. I will go out in our garden though and have a little walk up and down it in nice weather. Luckily I have plenty of hobbies and books to read. My husband is retired but will have to go out for food and to collect my medications etc. My son is able to work from home which is good.

[Justanothermama]

Hello all,

Can you PLEASE tell me what level three is in reality?? I’m not sharing a bed or bedroom now with my hubby. I’m not going anywhere, but he’s still working, but in a low contact field.

Should I not be living at all with anyone coming and going? This can be arranged if that’s what you’re being told.

You’re so fortunate that the U.K. seems to have organized a response for you. I live in the USA—if you can only imagine the circus with Trump at the helm. 🤦‍♀️ Trying really hard not to get political.

Much thanks! ❤️

[KittyJ in reply to Justanothermama]

I’ve not heard mention of level 3 here in the U.K. so I can’t help with what that entails. Is there nothing online to explain it ? I hope you find out soon 😊

[Justanothermama in reply to KittyJ]

Sorry I didn’t make myself clear. Your U.K. rheumatology department released a document that established a point system for risk, my factors add up to over three. So I’m unclear what people in that category are to do?

[KittyJ in reply to Justanothermama]

Ah ok, thats for the UK, the US will have their own system. If you score 3 or more on ours then you need to be shielding. Is there no guidance in the US as to what you should be doing?

[Justanothermama in reply to KittyJ]

😂🤣 the US is a shit show. There has been no guidance taking into consideration risk factors. Your metric/point system is very helpful. Mostly we’ve been told to “wash your hands and keep 6’ distance. Speak with your rheumy for specific advice as it pertains to you.”

And haven’t you heard? Trump wants the USA open for business by Easter! His economy means more than people’s lives. 😢

[Justanothermama]

Sorry I didn’t make myself clear. Your U.K. rheumatology department released a document that established a point system for risk, my factors add up to over three. So I’m unclear what people in that category are to do?

[KittyJ]

3 or more is shielding 😊

[Justanothermama in reply to KittyJ]

What does shielding mean? Should I move out of my family home where my hubby is still coming in and out? I could move into the RV and not be exposed to my husband at all, except out of doors at a distance.

I just don’t know what “shielding” means?

I should add that I’ve moved into a separate bedroom and am using a separate bathroom. But we share the common areas, I’m not hugging, touching, or getting close to him. And I am sanitizing the kitchen when I wake after he’s left for work.

[nomoreheels in reply to Justanothermama]

Hiya Justanothermama. Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others. We are strongly advising people with serious underlying health conditions (listed below), which put them at very high risk of severe illness from coronavirus (COVID-19), to rigorously follow shielding measures in order to keep themselves safe.

I'm not sure if you'll be able to open the link but this is what the above is taken from gov.uk/government/publicati...

[Justanothermama in reply to nomoreheels]

Thank you!!! Exactly what I was asking for!! ❤️

[nomoreheels in reply to Justanothermama]

You're welcome. 😊

[Justanothermama]

I can find. Thank you!