Antivirals

[trace58]

Anxious again my Rheumatologist seems clueless about the PCR n antivirals for two yrs recieved letters saying CEV had to have 4th booster etc read everything and followed Nras web where even if just on Methotexate without biologic or steroids because have another auto i.mune n Asthma still at risk! should priority antiviraks! Rheumi says no because thinks theres a list if drugs and the Pcrs etc come from centra l hub at NHs England anyway told to ring Gp if ill n ring 119 !? 119 have no idea not even a option on the system for Imunecompromised needing help!

[Runrig01]

Your rheumatologist is correct, it is linked to the codes re your medications, and sent by NHSE. It is a different list to the 3rd doses. Unfortunately other illnesses are not considered, unless they reduce your immunity. Methotrexate on its own doesn’t qualify, I’ll attach a screenshot, but it’s only if your taking it in combination with a biologic. The good news is that the studies have found those on only MTX mounted a good response to the vaccines, similar to the rest of the public. The antivirals are for those who are less likely to have mounted a strong response, leaving them still at risk of serious illness or death. If anxious you could consider having your antibodies checked, it might reassure you

Eligibility criteria

[oldtimer in reply to Runrig01]

Thanks for that - it makes it clear the difference between being CEV and being eligible for anti-viral treatment.

[KittyJ]

Being told you were CEV at the start of the pandemic doesn’t qualify you for the anti virals, It’s the drugs you are taking for your condition. Maureen says it all and shows you the qualifications so I’d stop stressing about it as there is nothing you can do if you don’t qualify. Many of us don’t but that’s good that our drugs have shown to not put us at increased risk now.

[3LittleBirds2]

Hi Trace

It is still an anxious time for us especially as Covid is still out there.

As I have said before many of us who were eligible for the anti viral meds ( after checking the criteria) did not receive a letter about the antivirals. Nomoreheels put a post up earlier this week regarding this and I have copied the link below, but hopefully you won't need it!

If you are still worried, maybe give the NRAS helpline a ring, I am sure they will be able to settle your fears also.

healthunlocked.com/nras/pos....

Best Wishes

[bpeal1]

Being classed as CEV doesn't automatically qualify you for anti-virals (and some people who weren't classed as CEV will be eligible). The eligibility criteria has been based on the Octave study which looked at how well immunosuppressed people responded to the vaccines. The list is therefore determined by which immunosuppressive treatments meant you were less likely to make a response to the vaccine. Therefore if your treatments are not on the list you most likely made a good anti-body response to the vaccine.

The complete list of those eligible for treatments can be found in Appendix 1 of this document. cas.mhra.gov.uk/ViewandAckn...

[Potatos in reply to bpeal1]

Thanks for this link. It is now clear why my husband received a red box and I didn't despite both being on CEV list.

[Love2camp]

Hi Trace,

I'm feeling confused and anxious just like you. I've been on the merry go round of emailing GP who pointed me in the direction of 119, called 119 who said speak to GP. Spoke to rheumatology who said they have no idea about any of it. It's a confusing mess and after 2yrs of being told you are a greatest risk it's very stressful. I also have asthma and am on the Jak inhibitor tofacitinib but reading the list Maureen has posted I don't think I'm eligible for antivirals after all. I just wish GP's had a better understanding and could just say yes or no in the first place. It would save a lot of unnecessary worry.

Have you looked up the Panoramic study? panoramictrial.org/ This gives access to antivirals if you catch covid and meet certain criteria. It may give you some peace of mind. It's what I'll probably do if I catch it. x

[wishbone in reply to Love2camp]

If you are taking a jak inhibitor then you qualify for a 4th vaccine and antiviral treatment. i'm taking baricitinib and am booked in for my 4th jab on tuesday. i've also spoke with rheumy and my gp who have advised me what i should do to access antiviral treatment. contact your rheumy and don't take no for an answer as it's clearly stated in the "green book" that jak inhibitors are a red-flagged drug regarding poor vaccine reponse.

sorry for lack of capitals but having problems writing posts.

[Love2camp in reply to wishbone]

Thanks so much for the advice wishbone. I'll press my rheumatologist again on the antivirals. Somewhere, someone has not filled my information in correctly because I didn't get invites for 3rd and 4th jabs and got them in the end by bypassing my healthcare providers and going directly to CCG via facebook. That's a poor way to access healthcare.

[wishbone in reply to Love2camp]

JUST FOUND OUT THAT JAK INHIBITORS HAVE RECENTLY BEEN REMOVED FROM THE GREEN BOOK LIST OF RED-FLAGGED IMMUNOSUPPRESSANTS. I WOULD LIKE TO KNOW THE REASON FOR THIS AS THEY FLATTEN T -CELL RESPONSE WHICH HELP COMBAT INFECTIONS. IT WON'T STOP ME FROM TRYING TO GET HOLD OF ANTIVIRALS IF I GET COVID.

THOUGHT IT BEST TO LET YOU KNOW.

TAKE CARE

[vonniesims in reply to Love2camp]

I have heard nothing although I am on Methotrexate, a biologic and my arthritis is active as described by n MRI scan so I have ordered a PCR kit anyway

[Otto11 in reply to vonniesims]

Your PCR kit will not be a priority one which is the one you need. 119 can send you an ordinary PCR test kit but it won’t be priority one. The one you need to access antiviral within first 5 days is much quicker. Hope this helps x

[vonniesims in reply to Otto11]

Ok thanks

[Clare-NRAS Partner NRAS]

Just to, hopefully, clarify a little bit of the situation.

Just because someone will have rec'd a letter and/or a PCR test kit does not necessarily mean that IF they got COVID they'd be automatically treated with an anti-viral or an antibody treatment. The person would still be assessed and it would very much depend on not only what medications they are on but their current disease state. The assessments would be carried out (as it stands at the moment) at a CMDU ( COVID Medicines Delivery Unit). Our recommendation is AS SOON AS you think you may have symptoms and you test positive with a lateral flow to contact 119 and your GP - state that you are on immuno-modulating medication and they should, ideally, refer you for assessment at a local CMDU. We have heard of people who have been successfully treated with anti-virals having not rec'd the letter previously, so don't feel that without the letter or the PCR test in reserve that you will necessarily be excluded from treatment if you unfortunately get COVID.

It is not an ideal situation but as we all know this is very much 'learning on the job' as this pandemic situation is unprecedented and some areas of the NHS are experiencing massive staff shortages and/or absences, so are struggling to get all the communications out in a timely way. I hope this offers some reassurance.

[bpeal1 in reply to Clare-NRAS]

Thank you for clarification

[Runrig01 in reply to Clare-NRAS]

I agree completely. I know of several people who didn’t get the PCR kit or letter but were contacted and offered treatment. It seems those who have their immunosuppressants registered on their repeat prescription for information only, have a more positive experience, than those who are only supplied by the hospital. It’s all to do with correct coding of your meds or illnesses. Also as you say having the kit does not guarantee treatment, a covid consultant will triage you. I know of several who were just on methotrexate who were rejected as they don’t meet the criteria. I also know of others on biologics who either had no symptoms or were improving who were declined. The current antiviral only reduces risk of hospitalisation by 30%, but the new Pfizer one will be available after the 10th Feb which reduces hospitalisation by 88%. I know 2 who’ve received the antivirals. One still needed bluelighted with Sats of 70% and gas just been discharged after 3 weeks on home O2. My other friend is an itu sister who actually still struggled at home, and had to use an oxygen concentrator. The monoclonal is definitely the preferred choice at the moment if you are able to get to your local CMDU unit, obviously you need to avoid public transport and taxis. It has an 85% chance of keeping you out of hospital.

For those who don’t meet the criteria you can sign up as part of the Panoramic study to receive the antivirals. You then have to complete a 28 day diary as part of the agreement. Not everyone is accepted into the study, it selects patients randomly. Here’s a link to signing up to this trial for anyone interested

panoramictrial.org/?fbclid=...

[trace58 in reply to Clare-NRAS]

great help is it Gp then 119 not 111 as 119 no nothing about it they say they just send out pcrs and test n trace etc ?

[trace58 in reply to Clare-NRAS]

Thank you I would have k nown nothing fir 2years without Nras as never here fron Rheumatology in Manchester !

[trace58]

Thanjs for info on speaking to my Rhrumi they don't want to know actualy just told me to ring Gps ! who always say ring Rheumi as to secialised ? infact one Rheumi nurse said oh yes you would need antivirals only to get a phone call from pharmsist to say only on Mthotrexate 22.5mg though so not eligible co morbidities not taken in to account @

[Otto11]

I spoke to my Rheumy nurse about this a few weeks ago & was told that they have only contacted those patients on Rituximab so far as they are deemed to be at the greatest risk. X