Anti-viral treatment for Covid-19 - not received a le... - NRAS

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Anti-viral treatment for Covid-19 - not received a letter

AR27 profile image
AR27
21 Replies

Hi, I've not recd a letter about being eligible for a priority PCR test in the case of a possible covid infection. I have RA and take 20mg Methotrexate . I have recd the letter saying that I'm due a booster following my 3rd primary. I rang 119 and they gave me a phone number to call but I think it might be about a anti-viral study as I was told they didn't send out the priority PCR tests. Does anybody have any information on this?

21 Replies
KittyJ profile image
KittyJ

Lots of people who are eligible haven’t received them. If you scroll back or use the search box you will find very recent posts discussing just this 😊

AR27 profile image
AR27 in reply to KittyJ

thank you

Madmusiclover profile image
Madmusiclover

Sadly this: chaos. bbc.co.uk/news/uk-60161763

s2202 profile image
s2202 in reply to Madmusiclover

Thanks for the attachment. It's very useful to read.

Lolabridge profile image
Lolabridge

Yes it has been a problem for many.But I think that maybe you would not qualify automatically as, unless you are also on a biologic as well, the dose of Methotrexate has to be greater than 20mg. You could check what it says the eligibility criteria are on the British Society of Rheumatologists website.

trace58 profile image
trace58 in reply to Lolabridge

where is this on the site

Lolabridge profile image
Lolabridge in reply to trace58

See Maureengibson’s post below.

MorganCat profile image
MorganCat

I haven’t had one either . I’m on 20mg of metoject . I was told it’s stronger than tablet form . Got all the other letters getting daughter vaccinated because of me and going for my 4th dose today . Touch wood no covid in my family so far .

Dave74 profile image
Dave74

I got hiven the same number too, it's for a study of you have symptoms of covid, the lady was very nice but said 119 have messed up giving the nunber out!! I've been missed also and can't sort anything!! 😊

Maureengibson profile image
Maureengibson

Unfortunately methotrexate on its own doesn’t qualify for the treatment. I’ve attached a screenshot. It’s only those who use a biologic along with MTX that qualify.

Eligibility criteria
bpeal1 profile image
bpeal1

As has been mentioned above methotrexate doesn’t make you eligible on its own. Even in combination with a biologic (unless the biologic is Rituximab) you’d only be eligible if your disease was active. Rituximab and/or regularly taking steroids do make you eligible. See Appendix 1 on this document for the full list. cas.mhra.gov.uk/ViewandAckn...

john140 profile image
john140

I got the letter but am not going to put any more juice into my body in the name of Covid..

AR27 profile image
AR27

Thank you all I now understand much better. I thought being eligible for the 4th jab, therefore more at risk would also have made me eligible for the treatment.

tangolil profile image
tangolil in reply to AR27

I was in the same boat as you AR27 but decided to take matters into my own hands and ring 119 which resulted in a return-post PCR test registered to me. Should I have a positive LFT I must use the PCR and phone the result in when I will be given antivirals within the first 24 hours. It sounds reassuring - I hope it all works should the condition arise! Fingers crossed.

nomoreheels profile image
nomoreheels

Contrary to what others have said or supplied info on I received my kit before Christmas & I’m on 17.5mg MTX (Metoject) monotherapy, also maintenance prednisolone albeit low dose. I think how well controlled maybe has some bearing on this particular med. I didn’t receive a letter beforehand, it just arrived through the post so I’m sorry but I don't know how you'd go about requesting one. It does seem as though many who are clearly defined as being eligible haven't received the kit, there have been many posts about it if you check back.

Poshcards profile image
Poshcards

I haven't either, I have been going round in circles with it, so I contacted my MP and he said it down to the GP's to sort, and this came from government as he asked the question. So he is going to talk to my GP about it x

vonniesims profile image
vonniesims in reply to Poshcards

My GPs say its not them!

Poshcards profile image
Poshcards in reply to vonniesims

So did mine, it is so stressful x

Clare-NRAS profile image
Clare-NRASNRAS

It has been incredibly confusing about getting letters and/or PCR test kits. NRAS along with other patient organisations who are reporting the same issues, have highlighted the issues to the Shadow Health Minister recently .

However, 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.

AR27 profile image
AR27 in reply to Clare-NRAS

Thank you so much for this. It is very reassuring.

s2202 profile image
s2202 in reply to Clare-NRAS

Thanks Clare. I feel like the other girls on this chat line who should have received the Priority PCR test, neglected and left out and very vulnerable. However your piece is reassuring. It's just a shame that the NHS haven't since arranged for all of us patients that feel we should have received the Priority PCR test the opportunity to ring the 119 number and get their case individually checked out. I have discussed my case with my GP. They have admitted they didn't have my records updated to show I was Clinically Vulnerable, High Risk, or Immunosuppressed or that I had received a Retuximab infusion in August 2021. I would guess this is why I didn't get the Priority PCR test. Thanks anyway Clare for your input. It is much appreciated.

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