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
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
Got mine last week.
Nope!
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.
It good to know that you can order a PCR test and keep just in case, how do you go about it please
Are you eligible? If you receive the letter it tells you how. I suggest you contact your Rheumy team
Thank you , I am also on Rituximab but no letter 🤔🤔
Yes I had my email about three weeks ago and received my PCR kit two weeks ago. I'm in England.
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?
I received a text message giving me a number to call directly should I need a PCR test. I’m in Scotland
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
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.
Yes. Mine arrived about a week ago.
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.
No, I havent. Am expecting a phone call today from the nurse specialist so will ask
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.
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...
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.
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.
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.
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
It's very very confusing x
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
I probably should know, but...CMDU?
Covid medicines delivery unit
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
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.
Here’s the hats being offered in England. It may change soon as Pfizer have had approval from MHRA for their new antiviral
Yes, last week. Ordered home PCR kit, just in case and have received it.
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.
Yes .Got the testing kit from them a couple of weeks ago.Hope I wil not need them but gives you security
I received a PCR test in post as a precaution as I am considered vulnerable being onRA meds. Ladyjan
Received mine a number of weeks ago and now have a PCR test. Not had to use it yet.
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
I don't ever receive anything 🥴
I’ve received the letter but no PCR test kit.
Yep had mine Denise64, I have received the PCR test kit as well.
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 !!!
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.
Hi, Yes I got my letter before Christmas and have received my PCR Test. Feel quite reassured I must say
Michele x
I have as well also recieved my pcr kit plus this week had my 4th jab. Each time my reaction is worse.
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.
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!
Yep I've sorted my own 4th Jab as doctors knew nothing and nothing from RA x
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.
Received letter on Tuesday and ordered PCR test kit the same day. It arrived the next day!
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?
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.
No not me
Yes got mine yesterday from RA team
Yes I received the letter before Christmas and the Priority PCR test arrived on Christmas Eve
No nothing yet. I am in Highlands, Scotland.
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. ?
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.
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!
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!
I had my PCR test arrive and that same day found an email had gone into the junk emails, about 3 weeks ago.
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
Yes. I received PCR test last week.
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 ..
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.
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?
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. 🤞
I've given up !!!!!😣
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
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
Ahhh ok thank you xx