Long sorry saga not to be read if do not want to be b... - NRAS

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Long sorry saga not to be read if do not want to be bored (Covid story)

Wobbies profile image
40 Replies

Haven't been on site for a while as got into a real low after losing my gorgeous dog.

However, prompted into action as caught covid. On Wednesday 16th. had Shingrix vaccine as on 8 wkly infliximab infusions and weekly methotrexate injections. Felt unwell that night but put it down to vaccine. By Saturday feeling really ill, so did covid test and was positive. Rang 111 for anti-virals. After 2 phone calls from them and 4 hours they sent an ambulance which I said I did not need, just anti-virals. Was told that ambulance would arrange them. Ambulance wanted to take me into hospital which I refused and asked about anti-virals which they said they had never heard of, and would have to contact 111. Thye sat outside in their ambulance for 1.5 hours then knocked and said they could not get response from 111, but shift ending. A doctor would ring me. 13 hours later a doctor rang and sent a prescription of Paxlovid to a chemist 10 miles away as the only one open on a Sunday. Nephew went to collect meds but chemist had not got them, so he took the prescription and put it into my local chemist on Monday am. Tuesday am. chemist rang me, saying they could not access Paxlovid, so get my GP to change it. Rang GP who advised could not prescribe anti-virals, go back to 111. Back to 111 and this time a nurse rang me from a unit based in a hospital who are the only ones who can prescribe. She was annoyed that I did not know name of prescribing doctor but taxid Paxlovid to me arriving at 9 pm. At that point, was starting to feel better so decided not to take them.

Now feel as if I have a really bad head cold and tested positive still 7 days after first test. So, do I take the antivirals now or just wait? How long has it taken everybody to recover and get a negative test is my question after my long moan?

PS am going to ask Father Christmas for a new immune system.

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Wobbies profile image
Wobbies
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40 Replies
vonniesims profile image
vonniesims

Think you have to take them within 7 days of getting covid. I have heard that some are testing positive after 10 t0 12 days! Hope you feel better soon

Wobbies profile image
Wobbies in reply to vonniesims

Thank you for that. Suspect that I over the 7 days when I actually got the antivirals but no point in taking them now. So, just a waiting game. Fingers crossed. x

Jackie1947 profile image
Jackie1947 in reply to vonniesims

It's 5

vonniesims profile image
vonniesims in reply to Jackie1947

119 told me it's now changed to 7 days !, but who knows!

springcross profile image
springcross

Hi Wobbies. What a palaver to say the very least! I can't advise you on the antivirals but I'm glad you're feeling a little better at least. So sorry to hear about your gorgeous dog, I can understand that it made you very low and possibly vulnerable as a consequence. Hope you soon test negative. x

Wobbies profile image
Wobbies in reply to springcross

Thanks Springcross. Yes losing my baby made me very low. Have lost dogs before but she was my last one as at 71 with poor mobility it would not be fair to have another. That made it all feel worse somehow. At least getting covid woke me up. x

springcross profile image
springcross in reply to Wobbies

My sentiments exactly in 2013. She was our last and still missed like it was yesterday but we haven't got another for the same reason as you. Hope you're well soon. x

well I hope you’ve been good this year then 😄 🧑‍🎄

Incredible tale of incompetence!

Hope you feel better soon

Amnesiac3637 profile image
Amnesiac3637

What a mucking fuddle……..

No point in taking the antivirals now as they’re to be taken within five days so keep them in reserve and ask Father C for not only a new immune system but a system that works for the benefit of the patients.

Wobbies profile image
Wobbies

Yes good idea. The system should be straightforward x

hopegalore20 profile image
hopegalore20

Hi Wobbies,Sorry to hear about your Dog passing. A very loving member of the family who will always be in your thoughts.

What a carry on you have been through, a saga.

Never heard of these anti viral!

You have did very well coping without them, but if you feel that your body would benefit and that you would then be able to kick covid right into touch, then take them. But seek advice from your GP.

Love the idea of your Christmas Hift from Santa. That is also going at the top of my list.

Keep getting stronger x

Wobbies profile image
Wobbies in reply to hopegalore20

Thank you. Will miss my Lulu at Christmas as we always wore matching jumpers just for that day. She always had to be covered as she had a skin problem. Part of the family gone.

Clare-NRAS profile image
Clare-NRASPartnerNRAS in reply to hopegalore20

nras.org.uk/resource/faqs-n...

See link above for information on anti-viral treatment for people with auto-immune conditions who contract COVID.

Mall profile image
Mall

it took me 11 days to test negative without antivirals. I thought that For the anti virals to work they need to be taken within 4 days so little point in taking them now. I take methotrexate and Benapali. I managed to speak to the antiviral nurse on day three and was not given antivirals, My temperature had returned to normal and I wasn’t breathless but had heavy cold symptoms and a cough. 4 weeks on and I still have catarrh and sometimes feel fatigued but have returned to my usual activities. I hope you recover soon.

Wobbies profile image
Wobbies in reply to Mall

That sounds like me, heavy catarrh and fatigue, so there is hope yet.

Downtime profile image
Downtime

I took them but to be honest I felt I would have got better anyway after 4 days or so. I think you have to take them within 5 days of a positive test. I tested positive for 14 days afterwards .

Wobbies profile image
Wobbies in reply to Downtime

That is good to hear. perhaps I was just too hopeful after 7 days but still have a very heavy cold with blocked nose. So, still a way to go, I think.

helenlw7 profile image
helenlw7

What an absolute fiasco! I fought Covid in April after shielding for two years. I reported my LFT on the NHS Covid App and then did the PCR test and reported it. I was rung up the same day by a nurse at the only hospital in Birmingham that deals with antivirals. The following day a dr rang me, who said that because of the state of my breathing - he could hear it - I should go for an antiviral infusion. He said it had to be done within 5 days. I had it on day 4 and my breathing didn’t get any worse, but I was still testing positive on day 11.

Wobbies profile image
Wobbies in reply to helenlw7

Good to hear of the system working. Hope you have suffered no long term effects.

helenlw7 profile image
helenlw7 in reply to Wobbies

I still struggle a bit with my breathing, but I do have bronchiecstasis and severe asthma.

Wobbies profile image
Wobbies in reply to helenlw7

Could not like your post as sorry to hear still struggling a bit. More improvement needed soon.🤞

helenlw7 profile image
helenlw7 in reply to Wobbies

I have an appointment after Christmas with my lovely lung consultant so hope he will be able to do something.

Blackberrywine profile image
Blackberrywine

What an appalling way to run a health care system! I'm so sorry you had to go through that. I'm glad you feel a bit better. Very sorry about your dog. I know how devastating that is.

Wobbies profile image
Wobbies in reply to Blackberrywine

It is really difficult to know who to complain to about a system failure when so many different organisations were involved. My friend's mother tested positive for covid for over a month and was advised just to stop testing as some people never clear the virus!!!!!

Blackberrywine profile image
Blackberrywine in reply to Wobbies

I know. I'm afraid the whole system has imploded.

Lyneal profile image
Lyneal

I too got Covid day one was our Queens funeral, I felt awful, my Husband then got it he wasn’t as bad as me, I tested positive for ten days. My Daughters advised me to try & get anti-virals but I had heard it was a palaver so didn’t bother. I did have really bad headaches for three week after a negative test. So sorry about your doggie, going through a hard time with our working cocker spaniel who is nine. He has a malignant growth in his anal glands, getting bigger every day. He is now in borrowed time, he will be our last dog aswell as I am in my seventies. So sad, am dreading it.

Wobbies profile image
Wobbies

So sorry to hear about your dog. It was cancer that took my |Lulu. She has left such a large hole.

One for me too please. xx

Clare-NRAS profile image
Clare-NRASPartnerNRAS

Dear Wobbies, I've just ready your tale of woe and as many have said here, there is no point taking the anti-virals now you are on the road to recovery. They won't make a difference now and thankfully it sounds like your bout of COVID wasn't too dreadful. Your story has landed very timely though as I am attending a stakeholder meeting with the dept of Health & Social Care this week on this very topic so if you're alright I will share your tale (anonymously of course) to exemplify the lack of joined up knowledge between 111, primary care, secondary care and pharmacists. I'd love them to work out the actual 'cost' of this debacle and what the 'cost' would have been if it had all gone correctly. Why on earth 111 call triggered an ambulance is beyond me. Thank you for sharing your story and let's hope it will lead in some way to an improvement in the 'system' so that those who desperately need the anti-virals get them in a timely way as they should.

Wobbies profile image
Wobbies in reply to Clare-NRAS

Am delighted to hear that my story can be used hopefully to improve the system. As well as delaying access to antivirals, so many resources were wasted.

Sewpin profile image
Sewpin in reply to Clare-NRAS

hi you can use my story too if you wish, very similar experience have been passed from 111 to my GP and 119 today, all telling me it was not them and someone else who sorts out anti virals. I’m on day 4 of covid and looks like I won’t get anti virals even though my GP says I’m eligible. Although docs receptionist told me, wrongly, that only people in hospital get them - I had to keep telling her GP said I was eligible. Added to that pharmacist told me I must keep taking MTX them rheumatology helpline told me I must not take it with covid. The amount of time on the phone and sheer confusion of conflicting advice has left me absolutely mentally exhausted. There has to be. A better system .

Wobbies profile image
Wobbies in reply to Sewpin

All this too when you’re feeling really wretched . Get well soon.

Clare-NRAS profile image
Clare-NRASPartnerNRAS in reply to Sewpin

thank you I will bring all this to the meeting today

Clare-NRAS profile image
Clare-NRASPartnerNRAS in reply to Sewpin

Can you let me know what part of the UK you're in please via email clare@nras.org.uk

Sewpin profile image
Sewpin in reply to Clare-NRAS

have emailed. Got anti virals today finally thanks for speaking for us

Sewpin profile image
Sewpin

exactly. Really helped me reading your story to know it’s not just me so thankyou

Jackie1947 profile image
Jackie1947

That's grim reading. Antiviral meds must be taken within 5 days of a positive result.

Clare-NRAS profile image
Clare-NRASPartnerNRAS

What part of the UK are you in Wobbies? On today's meeting with DHSC we have been asked to flag so they can investigate if there are specific areas that require better communications with their primary and 111 teams etc. Please email me on clare@nras.org.uk to let me know what area you live in thank you.

Flor1rence profile image
Flor1rence

about 11 days Wobbies. im so sorry for your loss, its heart breaking isn't it❤🌈

Vixen2 profile image
Vixen2

Hi Wobbies. I know how frustrating things can be. I had a massive flare up of my arthritis. I’m on Infliximab too. I could hardly walk. 999 wouldn’t send me anambulance. But another time i rang them. I was on antidepressants, as my mother had just died. I was worried i’d taken too many. Didn’t want an ambu. Yet they sent me one!!! Sorry i’ve no advice on the covid stuff. I’ve had it once when it first ‘came out’. All i can say is. A lovely steaming hot bowl of soup & Idris Elba in bed. Often cheers me up!! I’d have a breakdown if i didn’t have iplayer or all4 on my tablet & my earphones. I have some lovely nightlights too. Like my own little cinema in bed!!

Hope you feel better soon. (Get some chocolate out too!) I’ve recently got into Earl Gray. I’ve read itcan help the immune system, high blood pressure. It has other benefits too. Especially when you dunk your choc biccies in it. Lovely!!! X

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