New Meds for Covid : Hi Has anyone had a letter for... - NRAS

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New Meds for Covid

Denise64 profile image
93 Replies

Hi

Has anyone had a letter for CEV saying that they are eligible for pcr home testing kits to keep in and if they catch covid they can have the new anti viral medication?

Thanks

Denise x

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Denise64 profile image
Denise64
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93 Replies
Oshgosh profile image
Oshgosh

Got mine last week.

Madmusiclover profile image
Madmusiclover

Nope!

Lolabridge profile image
Lolabridge

Yes I'm in England and I got a letter from my Rheumy team telling me I may be eligible for antiviral drugs and that I should order a PCR test kit (just one) to have at home to use if I develop Covid symptoms.

I assume it’s because I’m on Rituximab and may not have developed an immune response from the jabs I’ve had.

Jillyanne profile image
Jillyanne in reply to Lolabridge

It good to know that you can order a PCR test and keep just in case, how do you go about it please

Lolabridge profile image
Lolabridge in reply to Jillyanne

Are you eligible? If you receive the letter it tells you how. I suggest you contact your Rheumy team

Jillyanne profile image
Jillyanne in reply to Lolabridge

Thank you , I am also on Rituximab but no letter 🤔🤔

Lolabridge profile image
Lolabridge in reply to Jillyanne

That’s odd I agree, especially as you are on Rituximab. If you haven’t heard anything by 10th call 119, say you think you’re eligible and ask what you should to do next. Or chase up with your Rheumy team.Good luck!

Stayloose profile image
Stayloose in reply to Lolabridge

119 are going to receive lots of phone calls on 10th I suspect!

Pythagorus profile image
Pythagorus in reply to Jillyanne

I received a letter from NHS yesterday.You can order a PCR test kit on line or phone 119 test and trace. I did so yesterday and received PCR kit today by post.

Liberty43 profile image
Liberty43 in reply to Pythagorus

Same for me. Royal Mail delivery on a Sunday.

Denise64 profile image
Denise64 in reply to Lolabridge

Thank you may be I'll ring my RA team see what they say x

Prunes profile image
Prunes

Yes I had my email about three weeks ago and received my PCR kit two weeks ago. I'm in England.

Ruth12345 profile image
Ruth12345 in reply to Prunes

Me too

Denise64 profile image
Denise64 in reply to Prunes

Thank you for your reply x

Frances_UK profile image
Frances_UK

They say if you think you should be eligible but haven't heard anything by 10th January to call 119.

Let's face it, those of us who didn't hear anything before Christmas aren't going to now. I'm still a bit confused by the eligibility criteria. I could ask, but I'm not confident my doctors would know either.

Curious, did anyone receive their notification about it later than the 23rd December? Not the PCR kit itself, but first contact to say they were getting it?

Eiram50 profile image
Eiram50

I received a text message giving me a number to call directly should I need a PCR test. I’m in Scotland

janmary profile image
janmary

I’m in SE London - haven’t received one or heard from whoever- have been unwell and tried to get PCR test ( though negative on all Lateral flows) none available. Never thought of trying 119

Lizard28 profile image
Lizard28

Yes, I’m in Scotland and got my letter yesterday. I can arrange to get a PCR sent to the house or get a priority slot to get one. I live in the country and not sure if I would have to travel to get one. Also if posted would I still have time to get the anti viral meds.I’m still pondering what to do. I honest,y hope I don’t need it but you never know.

Denise64 profile image
Denise64 in reply to Lizard28

Its just good to have a plan b isnt it I'm going to ring my RA team and see where I stand x

Esmereld profile image
Esmereld

Yes. Mine arrived about a week ago.

Mich1701 profile image
Mich1701

I've not heard anything. Was getting all the shielding letters and free vit D. Had a 3rd jab too buts that's been recorded as a booster. Not sure what's going on these days. Havnt heard a dicky bird from my rheumatology since May.

vonniesims profile image
vonniesims

No, I havent. Am expecting a phone call today from the nurse specialist so will ask

Denise64 profile image
Denise64 in reply to vonniesims

Ok hope you get some answers

Katiecatweazel profile image
Katiecatweazel

Hello, yes I have received a PCR kit, which is to be used if Covid symptoms appear in future. I am in England, West Country.

bpeal1 profile image
bpeal1

I’ve not heard anything and I’m on Rituximab.

If you’ve not seen this it’s worth a watch. If I’ve not heard anything by the 10th January I will be chasing it up. nras.org.uk/2021/12/23/covi...

Denise64 profile image
Denise64 in reply to bpeal1

Hi Well i rang 119 for advice they says my doctors have to refer me to NHS and that the doctors will know what to do.

So rang my doctors who knew absolutely nothing about this. Therefore God help all the vulnerable patients who are not getting referred in my practice. So I have left a message on Rheumatologist nurse line to get back to me. Why is it so difficult xxx

I‘ve not heard but also a bit confused about the criteria. Apparently if on aTNF it‘s only if you have unstable disease - who is supposed to be identifying us?I have been invited for my 4th Jab though.

Frances_UK profile image
Frances_UK in reply to

Based on the NRAS webinar, it sounds like GPs are identifying patients through their GP records.

It seems to suggest some of the criteria are any of the following:

- MTX >20mg or

- Unstable disease + biologic or

- biologic + MTX

My position is:

- Stable disease + biologic + MTX <20mg.

So I'm really confused. Plus, my GP has no record of my MTX or biologic treatment.

Good news about your 4th jab though.

in reply to Frances_UK

It‘s very confusing. I‘ve only recently been started on adalimumab so not sure that counts as stable disease on aTNF at all….on top of that I‘m not even sure the GP officially knows I‘m on Adalimumab as the letters from rheumatology seem to arrive with about a four month delay. GP was adamant I didn’t need a fourth jab but rheumatology identified me as needing one to their hospital vaccination clinic who are running 4th jab clinics for their vulnerable patients which is a relief. All such a muddle though. Maybe I will still be lucky! Who knows who to contact about it.

in reply to

I hope you somehow get it sorted!! 119 never rang back about amending my incorrectly recorded 3rd primary/booster. Maybe the best think is just to ring them if we test positive?I hope it all goes ok for you xx

Denise64 profile image
Denise64 in reply to

It's very very confusing x

Runrig01 profile image
Runrig01

Yes received the email 22nd Dec, kit was delivered on Boxing Day which surprised me. If you get a positive before you receive your kit, you contact the GP or 111 and asked to be referred to the CMDU urgently, as you believe you qualify. It’s only those on certain immunosuppressants. It has to be 5 days or less since symptoms started to be eligible. A Covid consultant will phone if your positive and check eligibility before discussing treatments

wishbone profile image
wishbone in reply to Runrig01

I probably should know, but...CMDU?

bpeal1 profile image
bpeal1 in reply to wishbone

Covid medicines delivery unit

wishbone profile image
wishbone in reply to bpeal1

Thanks. Not sure if such a thing exists in Wales, but would like to think so.

Runrig01 profile image
Runrig01 in reply to wishbone

Hi yes as bpeal1 says it’s the Covid medicines delivery unit. They are set up throughout the country. They contact you if positive, and triage you. If your still eligible they will offer one of the 2 treatments if your 5 days or less with symptoms

wishbone profile image
wishbone in reply to Runrig01

Do you know which are the two treatments in England? The only info I could find for Wales had lagevrio and ronapreve as the two treatments, yet I've heard the latter is not used anymore. Perhaps there's been an update since the report I read, if so it ain't easy to find that's for sure.

Runrig01 profile image
Runrig01 in reply to wishbone

Here’s the hats being offered in England. It may change soon as Pfizer have had approval from MHRA for their new antiviral

nhs.uk/conditions/coronavir...

wishbone profile image
wishbone in reply to Runrig01

Ah right, the last I heard sotrovimab was only available in England. Don't know why that is, (?) perhaps it's been made avilable in the rest of the UK since but not very reassuring if there's no info saying so.

Thanks Maureen

Runrig01 profile image
Runrig01 in reply to wishbone

🤗

Denise64 profile image
Denise64 in reply to wishbone

I've no idea what the treatment is but I'm determined to find out x

wishbone profile image
wishbone in reply to Denise64

Just found an update (Dec 21st) for covid treatments in Wales. Along with lagevrio and ronopreve mentioned above, xevudy (sotrovimab) has been included.

Brushwork profile image
Brushwork

Yes, last week. Ordered home PCR kit, just in case and have received it.

helenlw7 profile image
helenlw7

Yes, I had an email and a PCR test about 3 weeks ago and yesterday I got a letter confirming what I have to do.

Denise64 profile image
Denise64 in reply to helenlw7

Thank you for letting me know x

Fra22-57 profile image
Fra22-57

Yes .Got the testing kit from them a couple of weeks ago.Hope I wil not need them but gives you security

LadyJan profile image
LadyJan

I received a PCR test in post as a precaution as I am considered vulnerable being onRA meds. Ladyjan

ABwn profile image
ABwn

Received mine a number of weeks ago and now have a PCR test. Not had to use it yet.

Summerrain14 profile image
Summerrain14

I got the email from NHS England a few weeks ago and a PCR test was sent before Christmas too so feel very lucky that I have this safety net so to speak. Hope everyone who is eligible gets everything they need soon. It’s awful that is has been very hit and miss again. x

Denise64 profile image
Denise64 in reply to Summerrain14

Exactly it's this hit n miss that so annoying I just want to know and have this safety net xx

I don't ever receive anything 🥴

Frances_UK profile image
Frances_UK in reply to Marionfromhappydays

It all been hit and miss from the start hasn't it. I feel invisible sometimes, so I get it.

jessiem profile image
jessiem

I’ve received the letter but no PCR test kit.

cropredy profile image
cropredy

Yep had mine Denise64, I have received the PCR test kit as well.

Denise64 profile image
Denise64 in reply to cropredy

Ok thanks I'm going to get on the phone on Monday x

Gymcactus profile image
Gymcactus

Not received anything, not heard from rheumatoid clinic since June 2020, glad I've been stable. I did apply for kit on gov. website but told I don't qualify, but did have shielding letter originally. Oh well !!!

bpeal1 profile image
bpeal1 in reply to Gymcactus

These treatments are for people who are less likely to have made a good response to the vaccine rather than those who were originally identified as CEV (although there will be some overlap!)

Here is the relevant eligibility criteria.

Table of eligibility
Gymcactus profile image
Gymcactus in reply to bpeal1

Thanks for info, I don't qualify for a further vaccine either, had my booster in beginning October. I'm back in society now but being careful.

rawillbebeaten profile image
rawillbebeaten

Hi, Yes I got my letter before Christmas and have received my PCR Test. Feel quite reassured I must say

Michele x

Legley profile image
Legley

I have as well also recieved my pcr kit plus this week had my 4th jab. Each time my reaction is worse.

Denise64 profile image
Denise64 in reply to Legley

Oh no sorry to hear that can I ask which vaccine you had ? Hope u ok now x

nomoreheels profile image
nomoreheels

I might have received notification by text as my sister in law did but my phone is on the fritz so not sure. Anyway I received my PCR pack through the post before Christmas. Thankfully not needed to use it but comforting knowing it's there if I do. It wasn't requested so I haven't checked how that would be done, or if it is, maybe others have though.

Otto11 profile image
Otto11

Still not had anything. I asked my Rheumy nurse when she phoned about something else & she knew nothing about it. I also asked a GP at our surgery who also said they know nothing about it 🤷🏻‍♀️I’ve managed to sort my own booster jab out thank goodness. Think I’ve dropped off the radar!

Denise64 profile image
Denise64 in reply to Otto11

Yep I've sorted my own 4th Jab as doctors knew nothing and nothing from RA x

Otto11 profile image
Otto11 in reply to Denise64

Yes my 3rd got registered as booster so website would let me book my booster. I called 119 who told me it would get changed & to check regularly but it never did change. My GP who arranged first 2 knew nothing about a 3rd. X

wishbone profile image
wishbone

I'm in Wales. Apart from one of the usual suspects, a repetative shielding type letter, in December, I ain't heard a thing since the last repetative shielding type letter in July. I have to phone rheumy for relevant information.

Juleskb profile image
Juleskb

Received letter on Tuesday and ordered PCR test kit the same day. It arrived the next day!

frog profile image
frog

Hi, yes I had an email and received my pack a couple of days later. Odd though that my niece hasn’t had a pack and she is classed as a high risk. Could it be that different areas have different guidelines?

bpeal1 profile image
bpeal1 in reply to frog

The criteria for treatment is different to the criteria used to identify Clinically Extremely Vulnerable. The treatments are being targeted at people who are unlikely to have mounted a good response to vaccines.

That said many people (like me! - I’m on Rituximab) who are eligible still haven’t received anything.

Neonkittie17 profile image
Neonkittie17 in reply to bpeal1

Me neither 🤷‍♀️

Denise64 profile image
Denise64 in reply to bpeal1

Again so confusing surely you should of been contacted by now x

KittyJ profile image
KittyJ

No not me

Bothamsall profile image
Bothamsall

Yes got mine yesterday from RA team

talulah14 profile image
talulah14

Yes I received the letter before Christmas and the Priority PCR test arrived on Christmas Eve

Braecoon profile image
Braecoon

No nothing yet. I am in Highlands, Scotland.

Mozart150 profile image
Mozart150

I’ve not heard anything. I’m on a JAK Baricitinib and have uncontrolled disease. I’ve had a lot of steroid courses. Does anyone know if this drug is on criteria. ?

wishbone profile image
wishbone in reply to Mozart150

Tis one of the red flagged drugs I believe as it flattens T-Cell response, which makes the vaccines less effective, apparently. I think some steroids are also red flagged, at least prednisolone is. I'm taking baricitinib too.

Mozart150 profile image
Mozart150 in reply to wishbone

Thank you. Did you receive a letter and PCR test? I spoke to my rheumy nurse yesterday and she knew nothing about it and was looking it up on NRAS!

wishbone profile image
wishbone in reply to Mozart150

They are not being issued here in Wales for reasons best known to the Welsh gov. Not happy about that so I got my own via the usual government website. It meant telling one or two porkies on the application form but I sure ain't going to lose any sleep over that. Poor show by the Welsh gov in my and no doubt many other Welsh CEVs opinion!

Bailybiscuit profile image
Bailybiscuit

I had my PCR test arrive and that same day found an email had gone into the junk emails, about 3 weeks ago.

Evie3 profile image
Evie3

Yes got mine couple of weeks ago. Just had my Rituximab infusion and the nurse just said we had to get in touch with RA team if tested positive….so two avenues. Hope dont have to test that out tho

Denise64 profile image
Denise64 in reply to Evie3

Exactly dont want to have to test these treatments out but it's a good safety net to have xx

Topps profile image
Topps

Yes. I received PCR test last week.

Joanneforbes profile image
Joanneforbes

Hi 👋 yes I had another letter from my Rheumotology dept this week from East Sussex University hospital trust , I was told to get a pcr kit just in case and then maybe get anti viral meds if I get covid ..

sunnyweek profile image
sunnyweek

Today received a text from Nottingham University Hospitals saying the new treatments apply to me. Says nothing about going to receive a test through the post. It says ' if I test positive with a PRC test and I don't hear from the NHS within 24 hours, then ring 111'. But I don't know how the NHS would know I was positive. I had retuximab in December.

philfen profile image
philfen

I received a PCR priority test kit in the post on 29th December, didn't request it or have any correspondence about it. I did register to collect a lateral flow test from my pharmacy just before Christmas. So assumed that was the reason? I'm not on biologics, just 20mg methotrexate, sulphasalazine, and 2.5mg prednisone a day, but only the sulphasalazine is prescribed by my Gp.

So no real idea why I got one?

Denise64 profile image
Denise64 in reply to philfen

My friend is the same she has immune problems not on any meds and she has had the pcr and is eligible for the viral drugs which I'm glad about for her. X

12Gemini123 profile image
12Gemini123

I received the email and the pcr test, got symptoms on the 5th Jan and a positive pcr test on the 6th Jan. The system worked, NHS messaged me and a few phone calls later they have me booked in tomorrow for the infusion on day 4. Hopefully it works as already been to A&E today with oxygen level issues and now home and booked into virtual clinic with A&E to see how I’m doing tomorrow. This is the second time I’ve had covid and on Rituximab. 🤞

Denise64 profile image
Denise64 in reply to 12Gemini123

Oh God I hope you are feeling better .What a worry and having it twice.

Hope any treatment works very quickly for you sending hugs x

Flor1rence profile image
Flor1rence

I've given up !!!!!😣

Gigi71 profile image
Gigi71

I received the letter on Christmas Eve, and the PCR test has just popped through the letterbox. The letter said to contact them if I hadn’t received the test kit by the 10th January. I am on Humira, steroids and methotrexate. I’m due the booster,( I’ve had the 3rd vaccine) on the 17th January so will call the surgery to book on Monday 🤞 X

Miasnana profile image
Miasnana

I have a friend who has Myecena gravis and he was couriered a pcr test kit for if he got really ill ? covid and was admitted to hospital he would be given the new anti viral treatment

Denise64 profile image
Denise64

Ahhh ok thank you xx

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