Rejected for anti virals

[BookishVibes]

Hi everyone

I tested positive for Covid on Tuesday and reported it to my GP surgery on Wednesday. I heard from Chelsea and Westminster Hospital on Thursday.

They asked about how active my Lupus had been and I told them recently it had been pretty well controlled and they asked how it affected me and I said mainly skin, joints and fatigue. They noted down my meds (pred 7.5mg and Hydroxychloroquine 200mg). They said they felt the anti viral's side effects could potentially be worse than my Covid symptoms and so didn't recommend them for me. I didn't know what to say, so I just said okay.

When I got the letter through later addressed to my GP surgery it said I didn't meet the eligibility criteria for any of the treatments available and they "may wish to signpost this patient to the PANORAMIC study".

Has anyone had a similar or same experience?

Thanks

BookishVibes x

[Hidden]

Hi

I’m so sorry you’ve got Covid, are you ok? I’m also sorry you’re having this to contend with too. So you’re not eligible for treatment but if you’re signposted for the Study you’ll potentially get treatment there… 🤔 You’d think we’d either be eligible or not for antivirals and if you’re not then surely that person wouldn’t be eligible for the Trial either - but then I don’t know their criteria… 🤯

I thought it’d be perhaps be easier for us to get treatment after receiving our NHS eligibility letters.

Sorry I can’t actually answer your question! I hope you soon recover. ✨

[BookishVibes in reply to Hidden]

Thank you, Sarafied for your reply. Fortunately I've been feeling better this weekend.

I've just found the info out there a bit confusing. In places I read I wasn't eligible due to the meds I'm on but other people were saying they received the anti virals and were only on Pred and Hydroxychloroquine too. As I'm past the period when you need to start taking the anti virals or enter the study I'm just going to have to let it run its course. It's just a bit confusing as I did receive the letter saying I was eligible and the Covid tests. I was curious to know other people's experiences.

Take care x

[Hidden in reply to BookishVibes]

I’m so pleased you’re starting to feel better, hopefully coming to the end of it now. Try to go steady at first even if you feel ‘better’.

Exactly, I agree- it’s confusing! I recall others have asked or mentioned responses they’ve received when trying to get antivirals and it seems illogical, as some get them and others don’t with the same Lupus meds (unless doses have to be at a certain level perhaps). It’s worrying as we’ve all been so different with Covid, that maybe some of us that need the antivirals based on past experience, will be turned down.

Hopefully from here, it’s onwards and upwards for you, take care ✨

[BookishVibes in reply to Hidden]

Thank you so much. Take care x

[Sara_A in reply to BookishVibes]

I think you have to be on a higher dose of pred maybe 15 or higher?? I'm on 15mgs daily and mtx (also now leflunomide but wasnt both times I got covid) and i had antivirals.So it's the pred not the hydroxy or the lupus that makes you eligible (I'm sure)

It's all very confusing tbh. Unless when they assessed you they just decided based on ur symptoms that you didn't need the antivirals?? Didn't have a fever or any of the concerning symptoms maybe? I don't know 🤷🏼‍♀️

[BookishVibes in reply to Sara_A]

I did have a fever but the cough was just a dry cough, not particularly chesty, so that likely played a part in their decision, as you say. Thankfully I'm feeling much better compared to last week, so not taking the antivirals seems the best decision in my case thankfully!

[Star13]

Here is the link to the Panoramic Trial. You can sign up yourself and you will be monitored throughout from your own home.

panoramictrial.org/

[Maddymay65]

Morning

Sorry to hear you have caught covid I hope you are not too ill.

I have read the link to the study and think it is worth a read and I might be wrong but I think you may still be able to have the anti vitals if you want.

Personally I had covid in July last year and felt dreadful , I had the treatment , I was negative in 5 days and although I also needed 2 weeks of antibiotics for a chest infection . I think I got off light.

Rest up, take care M x

[BookishVibes in reply to Maddymay65]

Thank you, MaddyMay65. Take care too x

[lupie46]

You're not taking immune suppressants. That's why.

[Xraytek]

I had covid last November and was put on Paxlovid. The worst mistake ever. I started to get better immediately and tested negative in three days. After 5 days I returned to work but went downhill from there. I got the paxlovid rebound effect. The covid returned with advengence. I pushed through because I was out of vacation days and at the time I didn't know it was the covid returning. I tested a few days later and it was positive again. My GP said I was his 1st patient with the Paxlovid rebound. I think it would of been best to skip the antivirals with all the medications I was taking. Live and learn.

[BookishVibes in reply to Xraytek]

That's really interesting, I've never heard of rebounding. I'm really sorry to hear you had to go through that, that sounds awful. Sounds like I may have dodged a bullet...

[Sara_A in reply to Xraytek]

I also had covid rebound where I ended up testing positive for around 18 days!! I got better after the paxlovid antivirals and tested negative and then began to feel unwell again and tested positive and remained so for a long time! I did feel worse when I tested positive the 2nd time but I would still have taken the antivirals as they could have stopped me from becoming really unwell who knows 🤷🏼‍♀️

[BookishVibes in reply to Sara_A]

Wow, yes it really sounds like it's hard to know anything for sure regarding the antivirals!

[sarahsch]

Hi. I've no experience of antivirals however a friend of mine with luekemia has told me the effects of the antiviral were far worse than the COVID they were suffering.Started to feel better in a few days on each occasion but had to solder on with the antivirals for a full week to complete the course.

Upsetting to be refused but maybe a good dodge ( unless it's really needed!)

Sarah x

[BookishVibes in reply to sarahsch]

Thank you for replying, Sarah! I'm really beginning to feel I did dodge a bullet.

Take care

BookishVibes x

[Potatoheat]

HiTriage nurse chatted to consultant and he said yes as I am on steroid and Azathioprine I should take them. To be honest I was starting to feel better by then , no side effects apart from the horrible metallic taste at night which I cured by eating digestive biscuits and drinking ovaltine .😋

Not sure I would bother again as I went to a sunny Coronation party after testing neg, and I had a bit of a flare / rebound , but still negative. Felt weary for a few weeks but was that the av's or the Covid. Who knows?

Hope you improve soon.

Heather

[BookishVibes in reply to Potatoheat]

Thank you for replying, Heather. That's really interesting you feel you wouldn't bother next time. This is the second time I've had Covid and the first time I was eligible for the AV's (I was on Rituximab) but I turned them down as I felt I knew so little about them.

By the way, reading your post has made me crave digestive biscuits and Ovaltine! Love it! 🤣

Take care BookishVibes