The letter : As anybody had the letter yet to say we... - NRAS

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The letter

Soundofmusic52
Soundofmusic52

As anybody had the letter yet to say we are high risk I live in Northampton seems no one has ???

45 Replies
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Same here in East Riding, I work in the care sector and my boss is harassing me for proof of a letter. I'm scared to stay off work in case I don't get paid.. 😷☹️

Yea same here , I phoned up last week and my rhumy nurse told me I’m high risk and letters were being sent it this week , I see all these charts on here and they all read different, so I go back to work it stay at home , as I’m thinking if I get this letter it tells my employer and I will get my sick pay , but if I don’t well I don’t know where I am .

None yet in SW Scotland.

Not yet, Edinburgh

Nothing here in s. Wales

According to the list produced by the government and NHS people with RA are not classified as high risk. So I don’t think we will get the letter

Gnarli
Gnarli
in reply to dtech

I expect you're right, dtech, but those of us with co-morbidities are feeling a bit wobbly. I'm just grateful that I have finally got my pension. There had to be something good about being older

dtech
dtech
in reply to Gnarli

Yeah me too. (Was) working a three day week until this lot hit🙄. I work for a caring company who told me to work from home two weeks ago. Not that there is any work to do😂. But they wanted to protect me. So, still on full salary. Playing with my new puppy, who is really pleased to have me home all day. Only downside is they’ve just closed all the golf courses an£ lovely weather too🥴

Kags1068
Kags1068
in reply to dtech

I've got RA/JIA and have received the letter today, so some of us may get it?

Best wishes 😊

Cwendyn
Cwendyn
in reply to dtech

I’m on mtx and benepali with controlled RA. No letter. My colleague has crohns and on similar meds, but it’s not under control and she received a letter. We live in the same place. I suspect you’re correct. We are at risk, but not the very high risk that these letters are going out to. Makes sense as 1.5 million letters being sent and 4 million people with autoimmune disease and another 5 million asthmatics.

Just to let you know, I put up a post earlier to say that I had received the NHS letter today.

I live in Warwickshire. Hope that helps 😊

dtech
dtech
in reply to Kags1068

Does it say anything different from present govt advice?

I’m in Wolverhampton I’ve had my text message and my letter came Monday, I have RA but also severe asthma so not sure which one the letter applies too, maybe both

I had 2 phone calls yesterday to say I'd be having letters, I'm in South Wales, I left a message for my GP and my rheumatology nurse and both got back to me within hours to confirm letters would be on their way soon

Most of us are not in the SHIELDED category. Theses are people who would probably not survive even a normal cold or flu virus and are at extremely high risk.

If you have RA and take a Biologic drug and methotrexate etc... but you don’t have heart and or lung problems you are not in the SHIELD category.

I am pleased that I may be at higher risk but I’m not to be SHIELDED! It means I stand a chance against Covid-19 but I am still making the choice to self isolate.

Keeley08
Keeley08
in reply to Brushwork

I don't have heart or lung problems, but I've been told by GP and specialist I will have to shield for the 12 weeks because of Methotrexate and biologic treatment

Please remember that not everyone will get a letter.

"While 900,000 adults and children across England have been identified so far through NHS digital coding, there are some patients at high risk who will not be identified via this route. A BSR working group has been working with the RCP, other societies and the CMO for England to address this by developing a risk stratification guide for rheumatology. We have also published a scoring grid to help inform this exercise."

Know your own risk by using the matrix at the link below. Show it to your employer, if needs be.

Not all, but most people with RA are high risk.

Everyone should be staying home and avoiding contact with other people. To protect yourself, to protect others.

rheumatology.org.uk/News-Po...

Think it depends on the medication that u are on.

I am in Solihull. Just received text to say high risk and recommend 'shielding'. Only take methotrexate tablets.

That's interesting gaynor ,I'm similar and not ,same with others, it is a mess this ,and confusing, if your on the 12 weeks all the best as will be hard for you, is for the best

That's interesting... I was assuming mtx alone was not being considered high risk. Do you mind me asking whether you have any other health conditions that might also have been taken into consideration?

I am 66. Only other health issue is macular degeneration which think would not fall into this category. My bloods are perfect. Think my GP practice may be being extra cautious. I felt great walking two miles a day until received the text this morning....knocked me for six!! But suppose like many others just got to get on with it!!

Yeah that is interesting. I’m on MTX injections and 2 other DMARDs along with other meds for Osteopenia but no letter

Keeley08
Keeley08
in reply to Ferret18

You should receive a letter soon x

My bosses asked me to talk to Occupational health. The nurse I spoke to told me he is recommending I stay home for the 12 weeks. I'm just on Methotrexate.

I had a text on Monday afternoon and a letter Tuesday morning. Very efficient. Very impressed. My employer sent me home first thing Monday morning. Not sure about pay? I take two immunosuppressants and a biologic. I live in West Sussex.

No letter. Manchester. Have diabetes type 1, RA taking Abatacept and sulpasalazine, asthma and sleep apnoea. Whilst I haven't had a letter I am not going out at all.

Same here in Southsea, but rheumatologist rang me and gave advice, yes, I have to self isolate.

I dont know if this helps anyone.

I haven't received 'the letter' but I had a phone appointment with my GP over pain meds yesterday and she offered to write me an at risk letter. Hubby is picking it up after work today. I didn't even bring it up. So it may be an avenue for those that don't get the government letter.

Ajay575
Ajay575
in reply to Angjoplin

I'm sure some are going to be missed the way it is handled, your gp that's good, I would have thought they should have left all this to the gps they know us all

No I haven't I have asthma and I also inject Erelzi (Etanasept) for my RA so I would have thought I would have got one(maybe its on its way). I tell you what though I have made my own decision and I am isolating for 12 weeks until I am told any different.

Take Care.

Nothing here in Hertford.Although my bloods were normal (2 months ago )I'm on mtx and biologic plus I am asthmatic and have high blood pressure and atrial fibrillation.According to the chart and the NHS rheumatology guidelines I'm at least high risk .Like cropredy Ive decided to self isolate for 12 weeks.I might ring my gp.Im retired but I worry that my husband,who's still working will bring it home so we're being sensible at home too.

Ferret18
Ferret18
in reply to MadBunny

I’m Ware, so near Hertford and no letter either.

None yet North Ayrshire

Hi there, I also live in Northampton and have had my letter this morning. Amongst other things in it, it tells me to pack an overnight bag in case of hospital admission, it all makes it seem so real and is frightening.

I imagine that lots of people will be getting their letters this week.

Can I ask what meds yr taking , take care

Sorry just seen the other post

Hi Sound of Music, you have just asked what meds I am on. I am on Methotrexate, Leflunomide, Hydroxychloquine, Prednisolone, Tramodol, Oramorph, Matrafen pain patches and many other things as I have other health issues such as asthma, high blood pressure, restless legs, underactive thyroid gland, aneamia of chronic disease and many more. It is worrying times for people like us.

Hi, just spoken to my biologics nurse and she said The Letter is on its way to me. I live in Norfolk and am on 1 biologic and 2 dmards. Relief !... cos I live on my own and worried about groceries, been self isolating for couple weeks.

Had a shielding text. Letters due this week. Parents received their letters this morning.

Hi I have just had a return phone call from my rheumatoligy department they are running on bare minimum staff and have 5000 letters to stuff and post .As stated on the gov website if on immunesuppressant drugs /and or biological drugs we are to isolate for 12 weeks it was my consultant who rang letters will arrive but start isolating now I am in Derbyshire .Stay safe and well.

Today’s information from the British Association of Rheumatologist:

COVID-19 - Identifying patients for shielding in England

Risk stratification

Patients to shield

Patients to self-isolate or maintain social distance at their discretion

Patients to maintain social distance

guide

Immunosuppressive medication

• Corticosteroid dose of ≥20mg (0.5mg/kg) prednisolone (or equivalent) per day for more than four weeks

• Cyclophosphamide at any dose orally or within last six months IV

• Corticosteroid dose of ≥5mg prednisolone (or equivalent) per day for more than four weeks plus at least one other immunosuppressive medication*, biologic/ monoclonal** or small molecule immunosuppressant (e.g. JAK inhibitors)***

• Any two agents among immunosuppressive medications, biologics/monoclonals** or small molecule immunosuppressants with any co-morbidity****

• Well-controlled patients with minimal disease activity and no co-morbidities on single agent broad spectrum immunosuppressive medication, biologic/monoclonal** or small molecule immunosuppressant

• Well-controlled patients with minimal disease activity and no co-morbidities on single agent broad spectrum immunosuppressive medication plus Sulphasalazine and/ or hydroxychloroquine

• Well-controlled patients with minimal disease activity and no co-morbidities on a single agent broad spectrum immunosuppressive medication* at standard dose (e.g. Methotrexate up to 25mg per week) plus single biologic (eg anti-TNF or JAKi)** or ***

• Single agent 5-ASA medications (eg mesalazine)

• Single agent6-mercaptopurine

• Only inhaled or rectally administered immunosuppressant medication

• Hydroxychloroquine

• Sulphasalazine

* Immunosuppressive medications include: Azathioprine, Leflunomide, methotrexate, Mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, cyclophosphamide, tacrolimus, sirolimus. It does NOT include Hydroxychloroquine or Sulphasalazine either alone or in combination.

** Biologic/monocolonal includes: Rituximab within last 12 months; all anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab and biosimilar variants of all of these); Tociluzimab; Abatacept; Belimumab; Anakinra; Seukinumab; Ixekizumab; Ustekinumab; Sarilumumab;

*** Small molecules includes: all JAK inhibitors – baracitinib, tofacitinib etc

**** 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 interstitial 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

NB This advice applies to adults, children and young people with rheumatic disease. We do NOT advise that patients increase steroid dose if they become unwell

Sorry, British Society for Rheumatology.

Further information:

Risk stratification of patients with autoimmune rheumatic diseases

To be used in conjunction with BSR guidance published 22 March 2020

KEY

Score of 3 or more: patients to shield

Score of 2: patients to self-isolate or maintain social distance at their discretion Score of 1 or less: patients to maintain social distance

Risk factor

Score

Corticosteroid dose of ≥20mg (0.5mg/kg) prednisolone (or equivalent) per day for more than four weeks

3

Corticosteroid dose of ≥5mg prednisolone but <20mg (or equivalent) per day for more than four weeks

2

Cyclophosphamide at any dose orally or IV within last six months

3

One immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant***

1

Two or more immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant***

2

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

1

Hydroxychloroquine, Sulfalsalazine alone or in combination

0

* Immunosuppressive medications include: Azathioprine, Leflunomide, Methotrexate, Mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, Tacrolimus, Sirolimus. It does NOT include Hydroxychloroquine or Sulphasalazine, either alone or in combination.

** Biologic/monocolonal includes: Rituximab within last 12 months; all anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab and biosimilar variants of all of these); Tociluzimab; Abatacept; Belimumab; Anakinra; Seukinumab; Ixekizumab; Ustekinumab; Sarilumumab; Canakinumab

*** Small molecules includes: all JAK inhibitors – baracitinib, tofacitinib etc

**** 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.

V2: Published 24 March 2020

Sorry if this isn’t very clear you can view it at: rheumatology.org.uk

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