Hello everyone, is anyone else going round and round in circles trying to get the ‘Red Box’ PCR test for the extremely clinically vulnerable. I have tried 119, the GP surgery, who have passed me backwards and forwards, the Dept of Health, a complete non-starter and have now written to my MP!
I would be very grateful to know how any of you got yours. Thank you.
If you read back…I think somebody posted that these tests have run out..so if you test positive you should contact your GP in surgery hours or 111 outside those hours and they will pass on the information to the Covid Medicine Distribution Centre who will sort out the treatment you need.
Are you definitely eligible for one? I wouldn’t waste too much ( or any) time on it as if you catch covid then as AC says you can get the treatment if necessary.
I got mine online, the same way as I order lateral flow tests. There was a post in here advising which options to select to get the test kits.I didn’t get my CEV letter until some time after I’d got my PCR kit. I was going to be ready for if & when.
Lots of useful information on the NRAS website. nras.org.uk/resource/faqs-n...
Hi there, I tried to get one via 119 after seeing info posted on here but the person I spoke to didn't know what I was talking about! In the end I just got a normal PCR test to have ready at home instead. Hope you have more luck than I did!
It does seem a very confused situation doesn’t it. I want to take it further for those who don’t have a voice but are likely to become I’ll and need hospital treatment. Hope they sort it out soon. Thank you for replying.
So there is some confusion, the list for priority PCR kits is completely separate to the CEV list. It is dependant on your medication or illnesses that cause immunosuppression. DNARDs alobe do not generally qualify but biologics do. They have run out of the kits, and are planning from 10th February to accept LFTs that have been registered online. Here is the link re the changes
inews.co.uk/news/health/cov...
Here is the link re who is eligible, for RA we come under immune mediated inflammatory disorders
england.nhs.uk/coronavirus/...
I should add those who don’t meet the criteria can apply to take part in the nationwide trial. They select 50% of applicants at random, as long as your over 50, or 18-49 with underlying conditions
panoramictrial.org/?fbclid=...
Thank you very much for replying. I am on biological so do qualify. I think there is a lot of confusion at the moment. Best wishes.
Being on a biologic doesn’t necessarily mean you qualify. See the NRAS link above. However if you do test positive it might be worth asking to be referred for screening. Not sure what they class as active / unstable disease.
Bpeal is correct in that it also depends on disease activity. When you receive a call from a CMDU consultant they will triage you. I know of several who were declined, some because their symptoms seemed to have settled or were improving, but also 2 because disease was deemed to be stable. How they define that I do not know. It is still worth pushing to get referred if they do contact you after a positive result. The current antiviral Molnupiravir only reduces risk of hospitalisation by 30%, the Pfizer one which will be available from 10/2 is 88%. 2 friends who did have the antivirals: first still needed hospital with sats of 70%, and has just been discharged after 3 weeks on home oxygen. The other had an oxygen concentrator at home and struggled, but has recovered now. So clearly they are not the silver bullet for everyone. Take care and stay safe 🤗
I don't know that you can order them, but there has been updated Gov guidance intended for those suitable for antivirals dated 31.1.22 so maybe they are reissuing them again.
I received my priority PCR home testing kit unrequested (well, not by me) before Christmas & I’m not on a biologic. I can only think either my Rheumy dept or GP highlighted the need under an alternate specification, possibly how poorly controlled or need for long term steroids, even poor response to vaccines. I'm not sure this is the case though.
Being on long term steroids also makes you eligible. See here nras.org.uk/resource/faqs-n...
Thank you for that… that would apply to me.
Thank you so much, I obviously didn’t understand it was all so complicated. I just thought all those classed as CEV would get one. Should have realised it wouldn’t be that straightforward!
Hi all,
First of all, big thanks to everyone who has commented so far and for sharing your own experiences.
It is a VERY confusing situation for sure, and the information seems to be changing every day! The most up to date letter does suggest that from the 10th of February Lateral flow tests will be accepted as a form of testing.
See: england.nhs.uk/coronavirus/...
However, eligibility criteria will still be taken into account which you can find out more about here: nras.org.uk/resource/faqs-n... or by watching our December update here youtube.com/watch?v=PlswEXD....
NRAS will be providing updates as soon as we have more information on the situation. These will be posted out via our website and social media channels.
It is also worth noting that the anti-virals in question are for administration outside of a hospital setting so if in the relatively unlikely situation that you require treatment in a hospital setting, you will not be denied access to treatments on these same eligibility criteria.
Best wishes,
Hannah - NRAS
Hannah, DO YoU KNOW IF CERTAIN UNDERLYING HEALTH CONDITIONS ARE TAKEN INTO ACCOUNT REGARDING ACCESS TO ANTIVIRAL TREATMENTS? FOR INSTANCE, I'M CURRENTLY TAKING A JAK INHIBITOR , WHICH NOW APPEARS TO HAVE BEEN EXCLUDED FROM THE LIST OF RED FLAGGED IMMUNOSUPPRESSANTS AS MENTIONED IN MY REPLY TO MOZART150 BELOW, AT LEAST IT SHOULD HAVE BEEN TO HER. ALONG WTH TAKING A JAK lnhibitor I also HAVE PULMONARY FIBROSIS, SURLY THAT SHOULD MEAN I QUALIFY FOR ANTIVIRAL TREATMENT?....AT LEAST IN MY OPINION IT SHOULD.
SORRY FOR THE VARYING FONTS AND ABSENT LETTERS BUT I'M HAVING PROBLEMS WRITING A POST ON HU.
Hi wishbone,
Oh dear, sorry to hear about the issues with HU posting!
I'm afraid we don't have any clear information on the exclusion criteria at the moment, it might be worth seeing if you can get hold of your specialist consultant to discuss why you're not eligible (I'm aware this might be easier said than done 😬), hopefully they will be able to enlighten you as to the decision (or even better, maybe say it's wrong and get you sorted with one. Although I don't know if this will be the case).
A local pharmacist may also be able to help solve the mystery if it is to do with interactions between the medications (again maybe).
When/if we receive some we will be posting about it on our website and I apologise we cannot provide more accurate information at this moment in time.
Best wishes and stay safe,
Hannah - NRAS
Thanks Hannah, THOUGHT I WAS ELIGABLE FOR ANTIVIRALS BUT THAT WAS BEFORE JAK INHIBITORS WERE TAKEN OFF THE GREEN BOOK LIST OF RED-FLAGGED IMMUNOSUPPRESSANTS...NOW I DON'T KNOW IF I'M ELIGABLE OR NOT SO NEED TO FIND OUT. HOPE YOU CAN GET SOME CLARITY ON THE SITUATION. IN THE MEANTIME I'LL GET IN TOUCH WITH MY RHEUMY THOUGH I CAN'T SAY I'M CONFIDENT THAT THEY WILL KNOW EITHER .
Thank you very much Hannah
I spoke to GP surgery -they knew nothing about it. I spoke to the rheumatology nurse -and she went on NRAS while on the phone and said my medication isn’t included so she didn’t think I would be eligible (I’m on a JAK inhibitor Baricitinib). I then phoned NRAS -Nadine was so lovely and supportive and said they are having meetings etc to find out about JAKs and will update website when they get some answers. I had loads of steroids last year but am not on them now. I’m so glad we have each other and NRAS for support !
UNLESS MY MIND IS PLAYING TRICKS ON ME THEN THE LAST TIME I LOOKED AT THE LIST OF RED FLAGGED MEDS IN COVID 19 CHAPTER 14A OF THE NHS GREEN BOOK JAK INHIBITORS WERE INCLUDED ALONG WITH RITIXUMAB, MYCOPHENOLATE, ETC. BUT IT APPEARS TO HAVE SINCE BEEN UPDATED AND THERE'S NO MENTION OF JAK INHIBITORS. THERE NOW.
It’s all so confusing! I hope we find out soon !
That IT IS! IF JAK INHIBITORS HAVE RECENTLY BEEN EXCLUDED FROM THE LIST THEN I'D LIKE TO KNOW WHY AS APPARENTLY THEY FLATTEN T-CELL RESPONSE AND T-CELLS HELP COMBAT INFECTIONS, AT LEAST THAT'S MY UNDERSTANDING. IT WILL BE INTERESTING TO SEE WHAT THESE MEETINGS COME UP WITH.....HOPEFULLY SOON.
Yes wishbone, that is exactly right about t-cells. Therefore I don’t understand why people like me on Abatacept are not included, if we are not. What a muddle. Take care
I would be interested to know re Jak inhibitors too.... Somebody must know but nobody seems to know much about anything.
I KNOW JAK INHIBITORS WERE INCLUDED IN THE GREEN BOOK'S LIST OF RED-FLAGGED IMMUNOSUPPRESSANTS WHEN I LOOKED A FEW MONTHS BACK, BUT COuLDN'T SEE THEM THERE WHEN I checked THE OTHER DAY. I think we should be told why they've been ommited and HOPING THE NRAS CAN FIND SOMETHING OUT WHEN THE HAVE THE MEETINGS HANNah SPOKE OF above.
When I ASKED RHEUMY HOW I SHOULD GO ABOUT GETTING ANTIVIRAL TREATMENT A COUPLE OF WEEKS BACK THEY NEVER MENTIONED anything about JAKs and told me what to do, BUT I WOULDN'T BE SURPRISED IF THEY ARE AS MUCH IN THE DARK AS WE ARE.
The green book list is the list of those eligible for 3rd primary vaccine. The list of those eligible for covid treatments is a different list which can be found here. nras.org.uk/resource/faqs-n...
The people eligible for treatment are those identified by the Octave study which even after 3rd primary/booster may still not have made a good response to the vaccines.
THANKS FOR THE CLARIFICATION. I'M STILL CONFUSED (NOTHING UNUSUAL THERE), NOT WITH THE LINK YOU SUPPLIED THOUGH I'D LIKE TO KNOW SOME MORE DETAILS, INCLUDING WHY JAK INHIBITORS HAVE BEEN EXCLUDED . IT'S MORE TO DO WITH THE ATTACHED LINK BELOW... HERE'S SOMETHING CALLED "THE PANORAMIC STUDY" WHICH INCLUDES A WIDER RANGE OF HEALTH CONDITIONS THAT CAN BE ELIGABLE FOR ANTIVIRAL TREATMENT. ONLY NOW COME ACROSS IT. FROM WHAT I CAN MAKE OUT AND PLEASE CORRECT ME IF I'M MISTAKEN , IT MEANS SOMEONE LIKE MYSELF WITH A SERIOUS LUNG CONDITION CAN JOIN THE STUDY IF MY CONSULTANT OR GP THINK I QUALIFY FOR THE HIGH RISK GROUP?
I ADMIT TO BEING MORE THA A LITTLE CONFUSED BY ALL THIS! WHY ON EARTH CAN'T THEY SIMPLIFY THINGS. I CAN'T HELP BUT THINK THAT THEY ARE INTENTIONALLY COMPLICATING ACCESS TO ANTIVIRALS FOR SOME REASON.
CLICK ON MORE INFORMATION THEN ...NEW TREATMENTS FOR CORONA VIRUS AND PANORAMIC STUDY......
PS...I wouldn't think so, but DOes anyone KNOW IF THIS IS THE TRIALS WHERE THEY GIVE PLACEBOS TO SOME PEOPLE?
New antiviral treatments for coronavirus | Age UKageuk.org.uk › coronavirus-guidance › ne...
Yes the panoramic study is using placebos and is completely separate to the list of people currently eligible for covid treatment.
THANKS, DON'T THINK I'M WILLING TO CHANCE BEING PRESCRIBED PLACEBOS SHOULD I GET COVID!
CAN'T FIND ANYTHING UK RELATED, BUT I DID COME ACROSS THE RESULTS OF SOME AMERICAN RESEARCH STATING THAT OF THE APPROX 120 PATIENTS TAKING VARIOUS JAK INHIBITORS IN THE STUDY, THE MAJORITY SHOWED A SIMILAR ANTIBODY RESPONSE TO THE VACCINES AS HEALTHY PEOPLE, SO THAT IS SOMEWHAT REASSURING. I CAN'T ACCESS THE SITE AGAIN WITHOUT JOINING THE GROUP, WHICH I DON'T WANT TO DO, SO CAN'T REFER BACK FOR MORE SPECIFICS. A HANDFUL OF PEOPLE DID SHOW A POOR OR NO ANTIBODY RESPONSE, I THINK THESE PEOPLE WERE TAKING UPADACITINIB WHICH GENERALLY HAD A POORER VACcine RESPONSE THAN BARICITINIB AND TOFACITINIB. THE RESEARCHERS ADDED THAT THEY DID NOT KNOW WHAT LEVEL OF ANTIBODY RESPONSE WAS SUFFICIENT AND IT GOES WITHOUT SAYING THAT THE SAMPLE OF PEOPLE TAKING PART IN THE STUDY WAS SMALL. CANT RECALL SEEING T-CELLS MENTIONED EITHER, WHICH CONSIDERING THAT JAK INHIBITORS FLATTEN T-CELL RESPONSE SEEMS A BIT ODD.
FOR WHAT IT'S WORTH, I DON'T KNOW WHY PEOPLE WITH CERTAIN UNDERLYING HEALTH CONDITIONS DON'T QUALIFY FOR ANTIVIRAL TREATMENT. SPEAKING FOR MYSELF I FAIL TO SEE THE JUSTIFICATION WHY I AM NOT ELIGABLE FOR ANTIVIRAL TREATMENT AS BESIDES TAKING AN IMMUNOSUPPRESSANT , WHICH MAY OR MAY NOT LOWER THE EFFICACY OF THE VACCINES, I ALSO HAVE PULMONARY FIBROSIS. I MEAN COVID 19 IS A RESPIRATORY VIRUS THAT ATTACKS THE LUNGS MORE THAN ANY OF THE OTHER MAIN ORGANS, apparently, AND THE LAST THING I NEED IS FOR COVID TO EXACERBATE THE FIBROSIS. IT JUST DOESN'T MAKE SENSE TO ME BUT MAYBE MY EXPECTATIONS ARE TOO HIGH AFTER HEARING NUMEROUS POLITICIANS AND SO CALLED EXPERTS REPEATEDLY SAYING HOW PROTECTING THE VUNERABLE SHOULD BE PRIORITY!? 
aplogies forthe long rant and no need for you or anyone else to respond, but i've been thinking about much of what i've JUST said for some time and needed to get it off my chest so to speak.
please excuse the variety of fonts.
There really doesn’t seem to be any rhyme or reason to it does there. It is a good point about the placebos. I think I’ll just wait and see what happens next. Take care
LITTLE ELSE WE CAN DO OTHER THAN WAIT IS THERE. I REALLY DON'T WANT TO BOTHER RHEUMY AGAIN. BESIDES I'M SURE THEY WILL SAY IT'S FOR THE TREATMENT TEAM TO DECIDE IF SOMEONE IS ELIGABLE for antivirals AND I'LL CERTAINLY BE putting my case to them IF I GET INFECTED.
ANYWAY, THANKS FOR READING MY RANTS. IT'S UNFORTUNATE THAT THIS THREAD IS not more recent AS IT WOUULD HAVE BEEN INTERESTING TO SEE THE RESPONSE TO MY POSTS......THEN AGAIN, PERHAPS NOT! 
TAKE CARE
If you just hmmm on this post it will appear on 'recently active' 😊
SECOND THOUGHTS....WITH THE SCHIZOID LOOKING LAYOUT OF MY POSTS IT MIGHT BE BETTER TO LEAVE AS IS or it could give the impression that i'm a cantankerous cynical old toad and nothing could be nearer the truth!
Nobody would think that. Its been a trying year for everybody!
Yes, IT CERTAINLY HAS BEEN A TOUGH YEAR, AND TRYING TO MAKE MY POSTS COHERENT HASN'T HELPED ANY. On a Brighter note, I'm meeting good friends of mine for coffee in the morning. It will be the first time we've seen each other for a while due to the rise in omicron so looking forward to it.
THANKS STAYLOOSE.
TAKE CARE
I have been doing exactly the same, no joy and very stressful, I have written to my MP, his office manager is at this moment trying to sort things out for me. My rheumy says I should have it but as she is in another county, it would take days for her to get anti virals to me. She has told GP that I should be on his list anyway but he has chosen to ignore her letter!!
Positive lateral flow tests and negative PCR - is it my medication? 
Need someone to look outside the box
To difficult box
Rheumy today - tests tests tests!
Red rash 
