New antibody and antiviral treatments for people with RA

Rosiepup
Rosiepup Member Posts: 21
in Coronavirus (COVID-19)

I found this information on the NHS website this evening. It says that those who are eligible for the new treatments (the list includes RA) will be sent a PCR test to keep at home and in the event of testing positive they will be contacted by the NHS to start one of the new treatments, if appropriate. Anyone who hasn't received a test kit by 10/01/2022 and thinks they are eligible can call 119.

Fingers crossed the rollout for this is better than for the 3rd jab!

https://www.nhs.uk/conditions/coronavirus-covid-19/treatments-for-coronavirus/

Comments

  • jamieA
    jamieA Member Posts: 837

    Hi,

    I'm in Scotland and I think it might be a bit different here. I've just received a letter from NHS Scotland stating that according to their records I may be suitable for these monoclonal antibody treatments in the event I contract Covid19. It requests I keep the letter somewhere safe for reference in the event I contract Covid 19. If you cannot go to a test site it details how to book a PCR test online on the GOV.uk website - booking it as an essential worker so that the test is prioritised. There's then a specific number to call if the test is positive where they will give directions to a hospital where you'll receive either an intravenous infusion or oral treatment.

    www.nhsinform.scot/covid19treatments

  • MrDJ
    MrDJ Member Posts: 318

    interesting read. thanks for posting @Rosiepup

    anyone received a pcr test yet?

    as its the 8th ill give it until the 10th as mentioned before i contact anyone to find out more info.

    luckily ive also got my fist face to face with my rhumatologist in over 2 years on the 12th so will be intersting to see what he says.

  • Hairobsessed123
    Hairobsessed123 Member Posts: 165

    My hubbi has one !! I don’t know why ! Tested positive on lft so did pcr priority test Thursday and have heard nothing !! Myself and daughter had pcr tests Friday got our positive results Saturday! Checked tracking on priority pcr still in mail system absolutely ridiculous! He’s been ill since Wednesday by the time we hear anything I’m thinking he will be over it thankgod he hasn’t needed any anti viral medication!!! I wouldn’t use them alone I would go to a test centre as well x

  • MrDJ
    MrDJ Member Posts: 318

    sorry to hear that. sounds like its been lost. i would call 119 to get more advice and explain youve not had a result for your husbands test yet but yours taken later have come through.

    wishing you all a speedy recovery.

  • Hairobsessed123
    Hairobsessed123 Member Posts: 165
    edited 9. Jan 2022, 22:02

    Hi @MrDJ

    ive called them and a form was filled in still non the wiser thou 🤷‍♀️

  • PeterJ
    PeterJ Administrator Posts: 970

    Have you checked your spam folder? When we had PCR tests the results went into Spam/Junk

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Hairobsessed123
    Hairobsessed123 Member Posts: 165
    edited 11. Jan 2022, 08:37

    @PeterJ i actually rang 119 again yesterday and the test is lost in the post utterly ridiculous if u ask me ! So the advise is ring his G.P !! ( luckily my hubbi is making a recovery) but it’s scary to think these tests are for the vulnerable people who may well need those medications quickly xxx

  • jennand
    jennand Member Posts: 131

    I’m on biologics & had my 4th jab. I looked at NHS site which said contact 119 if not had priority PCR test by 10/1. The advisor told me I had to apply online through NHS Ste. When I told him that it advised to ring 119, he said he couldn’t help & contact either my GP or Rh nurse. GP knows nothing about it & Rh nurse hasn’t got back to me yet. Reading these comments, it seems the system is what it should be. I think if I get a positive LFT, I’ll just go to a test centre & take my hospital letter. There’s a lot in the papers today about failures in the system, either tests not being sent, or results not arriving in time or even treatments not arriving. Let’s hope I won’t need any.

  • MrDJ
    MrDJ Member Posts: 318

    still no comms here. no letter, no pcr backup test.

    had my 4th jab 13 days ago and have got rescheduled TNF infusion next wednesday so so long 4th covid jab, it was good while it lasted. back to no protection from next week :(

  • scotleag
    scotleag Member Posts: 84
    https://community.versusarthritis.org/discussion/comment/689726#Comment_689726

    That's dreadful and incorrect treatment. I did the same as you WRT 119 when I hadn't received anything by Jan 14th and received my PCR kit the following day. Seems you were unlucky enough to get through to someone who doesn't have a clue. I'd try again and this time insist they check the rules. I've misplaced my letter confirming the third jab was primary treatment not booster but gave them my name, address, NHS number, and number & address of GP. That was enough for them to send out the kit.

  • MrDJ
    MrDJ Member Posts: 318

    Still no pcr test here.

    phoned 119 on friday. told me they couldnt help and to contact my gp.

    phoned gp and receptionist knew nothing so said ring at 8am every morning to get a doctors appt. nope not doing that as theres limited appointments and people that are ill need it more than me.

    yesterday got a nhs letter saying i need to get a 4th jab urgently even though id had it on 15th January.

    I still cant go back to work as work in the worst hit hospital in the uk so guess im safe in my own prison cell of my house.

  • BettyMac
    BettyMac Member Posts: 217

    Some good news to share!

    I was advised by the hospital to contact T&T and request a Priority PCR kit.

    When I phoned a few weeks ago - they knew nothing about it and sent an ordinary PCR kit.

    My husband has a Priority one and they’re clearly marked so they’ll go through the system faster.

    I tried again today, first online - but the algorithms are not set up for Priority Kits - so I have just phoned them.

    Initially, the handler said Priority Kits were arranged by the hospital but when I queried this, she contacted her supervisor and then came back and said things had just changed and they were now set up to handle these requests and she would transfer me to The Elective Care Team.

    I expected they’d need NHS no, consultant/hospital/GP etc - but all they asked for was name, address, phone no and email.

    Bingo!

    Success!

    I know I shouldn’t count chickens etc - but a Priority PCR kit should be here in a couple of days

  • MrDJ
    MrDJ Member Posts: 318

    great news @BettyMac

    Im on to 119 now.

    Chap said the rules had changed from today 9th feb so he was going to ask the elective care team and put me on hold for past 10 mins

    Ok so spoken to elective team who said we cant send kit out until i receive a letter. try contacting my gp.

    I then mentioned your post above so she looked at her list and said, oh yes you should of got one. let me speak to my manager. another 10 minutes and no manager turned up so she said i will add you to the list of my own back as your symptoms suggest you need this kit.

    What an absolute palava to go through but at least thanks to your post im finally getting a kit sent to me.

    Now lets hope i never have to use it.

  • Struddie
    Struddie Member Posts: 6

    Just want to say - the system does work!

    Got my Priority PCR standby kit. Husband caught Covid and although we were extra careful, he passed it to me.

    First signs - sore throat and headache, (rapidly followed by temperature, aches and cough) I sent off PCR. Within 24hrs I received test result and was issued antiviral drugs, which were delivered to my door! I ❤ NHS

  • MrDJ
    MrDJ Member Posts: 318

    Yay! finally. glad the system worked for you Struddie but sorry to hear you both caught covid.

    Just to help others out, what meds are you on ie methotrexate and infusion and keep us updated on how long it takes before the sypmtons subside.

  • jamieA
    jamieA Member Posts: 837

    I'm in Scotland where the system is different as I detailed above. I heard earlier this week a friend of a friend, who has PsA, contracted covid a couple of weeks ago and immediately on getting a positive PCR received an appointment to attend a local hospital to get the antiviral treatment. However with the closing of test centres and PCR testing laboratories I don't know how this is going to work as of 1st April - my GP doesn't either. My GP said to me today that I should retain as many LFTs as possible and she 'thinks' an LFT will suffice for getting antivirals in future. She told me to keep the letter with the contact number somewhere safe as the number isn't published on the health service websites.

  • jamieA
    jamieA Member Posts: 837

    I saw a GP being interviewed on the BBC breakfast show this morning who was obviously not impressed with the lack of information as to who will be eligible for free testing from here on. She said she thought it will be restricted to those immunocompromised who were previously written to regarding their access to antiviral medication and she believed there would be a further letter sent out to those people. It's a bit ridiculous though since the majority of testing stops at the end of today.

  • BettyMac
    BettyMac Member Posts: 217

    It seems things have changed again, in England.

    My husband got this email yesterday


    ***** ***** *****

    Important information about new treatments for coronavirus

    Your medical records currently show you might be suitable for treatments if you get coronavirus. 

    You may have received a version of this letter before. It has been updated because the Government has changed the way you test for coronavirus. From 1 April you should check coronavirus symptoms using lateral flow tests, not a PCR test.

    This letter explains that:

    1. You should keep lateral flow tests at home
    2. You should take a test if you have coronavirus symptoms. Important: You must report your test result.
    3. If you test positive, the NHS will contact you about treatments.

    For more information visit: https://www.nhs.uk/CoronavirusTreatments

    Why are we sending you this letter?

    Health experts have looked at the health conditions which put people at more risk from coronavirus. Those health conditions have been agreed by UK chief medical officers. 

    We are contacting you because your medical records currently show that you have one or more of these health conditions. This means that treatments might be suitable for you if a test confirms you have coronavirus. 

    These treatments can stop you from getting seriously ill and need to be given quickly after you start to have symptoms.

    1. You should keep lateral flow tests at home

    The UK Health Security Agency will send you one pack of lateral flow tests by 12 April. Only use them if you develop symptoms. If you run out, you can order more from https://www.gov.uk/order-coronavirus-rapid-lateral-flow-tests or by calling 119.

    You can use any lateral flow tests supplied by the Government. Tests bought from a shop cannot currently be registered via GOV.​UK or 119 and you will not be contacted about treatment if you test positive using these tests.

    If you were previously sent a PCR test you can keep it. You might be asked to take a PCR if you receive treatment from the NHS.

    2. You should take a test if you have coronavirus symptoms

    If you have coronavirus symptoms you should take a lateral flow test immediately, even if your symptoms are mild.

    You must report your result at https://www.gov.uk/report-covid19-result or by calling 119. It’s important to provide your NHS number so you can be contacted. 

    If your test is negative but you still have symptoms, you should take another test on each of the next two days (three tests in total over three days). 

    3. If you test positive, the NHS will contact you about treatments

    If any of your lateral flow tests are positive and you have reported the result, the NHS should contact you about treatment. If you are not contacted within 24 hours of your positive test, call your GP surgery, 111, or your specialist clinician (if you have one), who can make an urgent referral.

    Yours sincerely

    Professor Stephen Powis

    National Medical Director

    NHS England and NHS Improvement

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