Covid & Antivirals: I tested positive for Covid on... - LUPUS UK

LUPUS UK

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Covid & Antivirals

Spandau profile image

I tested positive for Covid on Saturday evening and I am having real difficulty in accessing antiviral treatment (I should be entitled to receive it due to immunosuppression). I had thought before getting Covid that it would be a very smooth system but that is definitely not the case! The window of opportunity will probably pass before I get chance to speak to someone 😞

24 Replies

Hi Spandau, sorry to hear of your covid-related troubles! I caught covid myself on Sunday, saw the doc yesterday and picked up antivirals today. Like you, I thought it would be an easy process due to being immunocompromised, and thankfully it was—but then again, I’m in Australia! I believe you’re in the UK? I’m hoping someone on this forum, who is from the UK, can give you something more helpful than I can. In the meantime, hang in there, and I hope you don’t have too rough a time with the covid. 🌻🌈💜

Thank you MusicalFurbaby, I am so glad the process was a smooth one for you and I hope they help and you feel a lot better soon.

Yes I am UK based and I keep being told I am on the list but the list is very long and I am not near the top yet!

That sucks, especially when time is of the essence! I’m so sorry to hear the system is so slow over there. Certainly makes me grateful for what we have here in Australia. Keep your chin up—hopefully others here on this forum will post UK-based replies for you too.

Sezvic profile image
Sezvic in reply to Spandau

Hi Spandau, I hope you have managed to talk to someone by now. Myself tested positive yesterday, my cough has got worse and throat are so sore. I’m still waiting for someone to contact me.

Spandau profile image
Spandau in reply to Sezvic

I hope you get contacted soon Sezvic and that you start to feel better.

I am still waiting! 🤦‍♀️

Sezvic profile image
Sezvic in reply to Spandau

They supposed to contact us within 24 hrs. Are you getting any symptoms?

Yes headache, temperature, cough, sore throat, achy everywhere. They did contact me within 24 hours by text to say someone would be in touch, that was Sunday morning!

Sezvic profile image
Sezvic in reply to Spandau

I got the same symptoms. My throat feel like there’s a razor in there. I’ve lost my appetite also. I got a chesty cough, doctor has prescribed me with antibiotics until someone called for the antiviral.

Not easy, COVID is going around with gusto for sure.

I caught last week, and tested positive on Thursday, after getting antibiotics, which I will now keep for a rainy day. No luck on the antiviral front personally. But I got past the worst of it.

Hopefully you get the help you need x

Sorry to hear you weren’t successful getting antivirals LottieLou but I am glad you are now over the worst of it. I hope that continues.

In the US you get nothing unless you end up in the hospital

I was rung by the hospital to be told the government had moved the goal posts and changed the criteria and I was no longer eligible for anti virals. The doctor was not happy about it and obviously nor was I. I contacted the Panoramic viral trial and they sent me the anti virals which I took and reported daily to them my symptoms etc. I was very grateful to have them. Try PANORAMIC The PANORAMIC trial team panoramictrial.org/

new_panda profile image
new_panda in reply to victhevic

Hi victhevic, if you don’t mind, may I ask what medicines you are taking as I’mwondering what are the government criteria now. I’m currently on two immunosuppressant and tapering dose of steroid. Thank you

victhevic profile image
victhevic in reply to new_panda

I m on azathioprine and hydroxychloroquine but apparently there’s a 3rd drug I m not on that I need to be taking. They’d just added it to the list. It’s so frustrating as my condition is the same but my body doesn’t tolerate other medications.

Hello Spandau,

I had/having the same problem as you, tested positive beginning of last week, and by time they called me the window for antivirals had passed so they wouldn't give them to me. My consultant even the week before had told me it was a very efficient system so I don't think he will be impressed when I next see him that I had so much trouble trying to access them and then didn't get them at all.

I hope you have more luck than me and start to make a recovery soon

Spandau profile image
Spandau in reply to SLB86

I am sorry to hear SLB86 that you had difficulty accessing the antivirals, it really is so frustrating and shouldn’t be like this.

Hopefully you are recovering well without them.

I had the same issue in March. When I eventually got a call back from the hospital on day 3 they said I would only be getting anti virals if I became unwell enough to be admitted to hospital. I was a bit surprised to say the least.

If the criteria have changed for accessing/being entitled to them, you would think they would inform everyone to manage expectations.

I hope you recovered ok without them Sazbury

I am so sorry to hear this. I had covid in March and was informed that despite having hydroxychloriquine, azathioprine and prednisone I wasn’t entitled to anti viral treatment. I had 3 primary jabs but the very rude doctor advised that was all irrelevant and to this day nobody has explained why I didn’t meet the criteria. A week prior to my diagnosis my friend who has APS received anti virals, but I also have SLE and I didn’t. Same country, different sides of the country to each other. No obvious reason. Hope you and all those currently unwell make a good recovery.

Thank you - so frustrating that once again it seems to depend on where you live despite the fact it is a centrally controlled service!

I was contacted by the covid clinic as soon as my test result was positive. The nurse called me and said that a pharmacist would call me and he did so straight after I'd spoken to her even tho she said it may be monday (this was Friday I spoke to her) which again would have been cutting it close to the 5 day cut off for me too. But as I say the pharmacist literally rang me about 15 mins later.He sorted the drug out for me and arranged for it to be dispensed from my local hospital and then delivered to my front door in a taxi all within about an hour!!! I was so shocked,!! After working for the nhs for 20 or so yrs I know things don't usually run this smoothly 🤭😉😆

I don't know where u are based but I am n Yorkshire/York way and I could not fault the service it was amazing.

I also have had priority test kits sent out to test as soon as I get any symptoms.

I wasn't actually very symptomatic tbh but the nurse didn't even ask about that, I'm on 25mgs mtx, 10mgs daily steroids, hydroxychloroquine.

Hope u r successful soon 🤞cos as u say u will be out of the 5 days soon

Spandau profile image
Spandau in reply to Sara_A

I am so please the system worked so well for you Sara. I am Gloucester based and the service certainly wasn’t the same here unfortunately!

I was called this afternoon and triaged by a nurse who said as it was day 5 and as my symptoms had stabilised and aren’t getting any worse then they wouldn’t approve me for the treatment but to call my doctor if I get any worse.

It is very frustrating but I suppose antivirals are there to prevent serious disease and as I am not too ill then all is fine but it could have been different.

Phone a GP! I had trouble getting it as 111 sent to some hospital that ignored it. I had to phone GP that re referred me to a different hospital to dispense it, and that unclogged the mess. I think any GP can refer to to get the treatment

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