Biologics / Psoriatic Arthritis = antivirals?

NottsInNorfolk
NottsInNorfolk Member Posts: 2
in Coronavirus (COVID-19)

Hi all! This is my first post! So hello to everyone! I just wondered if people had received letters in the post and PCR test in case you are positive for covid so that you can be given antiviral treatment quickly? I read on the government website that people with autoimmune disease will get one by today (if not you have to ring 119 to order a PCR test). I've had all the letters about shielding and being CEV and am due to have my fourth jab in a couple of weeks but I haven't had this letter re antiviral treatment. Just wanted to see if many people on biologics and have arthritis have had this letter?

Thanks all!

Craig

Comments

  • Ellen
    Ellen Moderator Posts: 1,841

    Hi @NottsInNorfolk

    Welcome to the Online Community and well done with your first post.

    I see you have Psoriatic Arthritis and are wondering about the new scheme where a PCR should be sent to you so that you can have the antiviral medication quickly if you get a positive PCR.

    I haven't noticed many discussions around the subject, but thing someone who uses 'Val's café' mentioned getting hers a little while ago.

    In the circumstances I would suggest you do ring 119 and try to chase yours up.

    Do please let us know how you get on and good luck with your 4th jab!

    Best wishes

    Ellen.

  • MrDJ
    MrDJ Member Posts: 318

    Hi @NottsInNorfolk and welcome to the forum.

    There is still much confusion out there.

    Like you i read that we should all receive a letter by the 10th January. Here in London or my borough anyway we are lucky if we see a postman twice a week and its been like this since before christmas so i guess still a massive backlog of post.

    As of yet, ive not had any communication about the anti virul and pcr test kits being sent out and the only way i know about it is from this great forum.

    my 3rd dose was marked down as booster even though i should of had a full primary dose (they are exactly the same thing though).

    30 minutes ago i did ring 119 to enquire. after the many automated options to press i finaly got a real person. he said their computer system only shows upto 3rd dose and has no mention of 4th dose booking yet. he suggested to take my letter to a walk in centre....but this is where the fun starts as i do not have a letter, yet and my 3 months 4th booster is suposed to be in 7 days time.

    now comes the catch 22 again. in 15 days time i have my anti tnf infusion so even if i did receive a letter today it is too close to my infusion drug which we are told has to be 2-3 weeks before or after the covid jab.

  • sarahtwigs
    sarahtwigs Member Posts: 4

    Hi Craig! I've had an email and a PCR test in the post, but no physical letter regarding the PCR/antivirals.

    I did get a generic letter from rheumatology saying I could now go and get my 3rd vaccine, when it should say 4th, so my main consultant wrote to me again stating 4th dose so that I can take that with me to the vaccine centre. From what I was told you can't actually book a 4th dose online and you have to go to a walk in centre, but not all of them accept people for 4th doses. So I've gone through the list of vaccine centres on the NHS website to see which ones do offer that... I haven't actually gone yet but I expect it will be an interesting visit!

  • Sunflower46
    Sunflower46 Member Posts: 8

    I have not received an email or letter but I did ring up 119 to request a pcr test to keep at home due to being immunocompromised.

    I am on both a biologic and methatrexate.

    I was on for nearly two hours .... 😩.

    119 didn't really seem to know what to do in my situation. In the end I have been sent a pcr test to keep at home but they did not know if it was "the correct type in case the Barcodes are different"

    I asked them also about access to antivirals and again no one knew much.

    In the end they recommended that I find out from my ccg about where my local covid medicine delivery unit is and how I access it or that I find about the panoramic study.

    Not sure any of what they told me is of any use. I just want reassuring the systems are in place and they work

    I have followed up with my gp to see if they know what to do should I test positive (other half works at a supermarket and x 2 kids at 6th form one of whom is special needs and I am a full time carer for ) and they have no clue and are Following up with ccg.

    Regarding my vaccine I have had my 4th dose(booster). This was offered to me by my gp surgery.

    My 3rd is not recorded anywhere in the nhs system and I have called 119 in November and December to get my record updated with no joy despite the promise of a 21 day call back....

    I now have a complaint regarding this.

    I have now contacted my ccg directly help with both of the above.

    It's exhausting and just adds more worry to an already worrying situation.

    We need someone to advocate on our behalf to ensure the system is working to help us

  • Struddie
    Struddie Member Posts: 6

    Hi Craig

    I just noticed your post as I had a scare this week. I developed Covid symptoms and like you I have Psoriatic arthritis and in clinically extremely vulnerable group - shielding, 4th vaccine etc

    I haven't had a letter re antiviral treatments and a 'standby' PCR. When I spoke to GP he said that by the time I get results of postal PCR (I don't have car to go to testing station), it would be too late to get antiviral treatment as they have to be given within 5 days of first symptoms.

    GP did see me to check chest and oxygen levels and it seems I've got a nasty viral infection but not Covid - still waiting for PCR results!

    You might be interested in a news story on BBC online news app today. It appears many many vulnerable people have been left off the list for this letter. I definitely think Versus Arthritis should be looking into this and being advocates for us

    I'm going to try 119 again. It was really scary thinking I might have Covid but being told that I couldn't get a drug that would potentially keep me out of hospital

  • MrDJ
    MrDJ Member Posts: 318

    im still waiting.

    i put it down to post backlog but yesterday received a letter with appt and that was posted 3 days ago.

    so no communication what so ever since the last nhs and government letter which was around 2 months ago.

  • SandiB
    SandiB Member Posts: 22

    I asked about this at a recent appointment and was told by my consultant that it was only for trial group members and anyway no point as “Covid is nearly over anyway’! Needless to say I will be contacting the CCG.

  • MrDJ
    MrDJ Member Posts: 318
    https://community.versusarthritis.org/discussion/comment/691028#Comment_691028

    Covid is nearly over. wow, and a consultant said that.

    Its not over and sadly it never will be. it is here for the rest of our lives and we will have to live with it. there will be new variants and some may not be as mild as omicron.

    for the majority of healthy people it will be fine and yes everything should go back to normal.

    for imuno supressed thats a different story. last i heard is discussion of a six monthly jab for imuno supressed and the elderly. this has not been finalised yet.

    Ive had 4 jabs so far and 3 weeks after each jab i have my anti tnf treatment which wipes out my imune system.

    Ive had the blood test to check if i had any protection from covid and each one has come back zero protection.

    9th-22nd february there were 528,871 new cases.

    Next month it will be 2 years for me working from home and my hospital has said its still way too risky for me to go back to work.

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