Positive result: Good start to the year ! My PCR... - PMRGCAuk

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Positive result

York54 profile image
61 Replies

Good start to the year ! My PCR test came back positive yesterday. I have a rotten tickly cough , runny nose and a sore throat. My symptoms began on New Years Eve and I don’t feel too bad now. If it remains like this , I can cope . My family were all so careful leading up to Xmas , doing LFT. Boxing night my son went for a drink with his friends , did LFT each day after that showed negative so he visited again on Tuesday along with other family members. That was enough , my other son is positive too. However my hubby is negative as is sons girlfriend and her daughter. We were all together yet it has discriminated who it attacks!! No rhyme or reason 🤔🤔🤔🤔

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York54 profile image
York54
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61 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Unfortunately that’s the way it appears…..hopefully it’s got as bad as it’s going to and you improve asap. 🌸

PMRpro profile image
PMRproAmbassador

Shows a) how easy it is to drop your guard and b) how reliable it is (or otherwise) to rely on LFTs

Lookingforideas profile image
Lookingforideas in reply to PMRpro

Yep, the LFTs haven’t served us that well, but Hey Ho, it’s all a learning experience 🙄. Also, when I mentioned in the group about the instructions saying not to do the LTF test within 30 mins, no one had remembered that bit … so operator error may well be a testing issue too. And …. I just read in here somewhere that somebody says omicron lingers more in the throat at first so the nasal swabs won’t pick it up? Can’t find that bit again 🤦‍♀️

Exflex profile image
Exflex in reply to Lookingforideas

I read a post from Prof Tim Spector advising throat and nose, as nose swabbing alone is insufficient. Now in the U.K. the newish FlowFlex are provided with short swabs making throat tickling tricky. I’ve been using the longer swabs from earlier kits but chemicals and detector from the new FlowFlex.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Exflex

Actually there is a warning in instructions- “Flowflex should be performed using nose sample only”…whether that’s for H&S reasons or other don’t know…

Exflex profile image
Exflex in reply to DorsetLady

I can’t see why the warning to sample as much virus antigen as possible. I suspect the makers are worried people could swallow the stick. I wouldn’t risk tickling the tonsils using the short swabs then wait 12 hrs in A&E.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Exflex

As I said , H&S reasons probably

Sharitone profile image
Sharitone

Fingers crossed you feel better soon.

yogabonnie profile image
yogabonnie

Hope you are feeling much better!! How much prednisone are you on if you dont mind my asking and how long have you had PMR?

York54 profile image
York54 in reply to yogabonnie

I’m now on half a milligram of pred and I take hydroxychloroquine . I’ve had PMR since 2016. Hopefully it’s on its way out now 🤞🤞🤞

Blearyeyed profile image
Blearyeyed

Oh ,what a pain!At least your feeling as well as can be expected and your symptoms are remaining mild , fingers crossed that will continue.

Take care of yourself and don't be tempted to jump back on the horse too quickly after the symptoms are gone or you could end up with rebound pain or fatigue.

The breathing exercises for Covid available online are very beneficial done during the day in reducing the chance of breathlessness or a build up in the chest.

Hugs , Bee xx

York54 profile image
York54 in reply to Blearyeyed

Thankyou x

SheffieldJane profile image
SheffieldJane

I have heard similar stories. Get well soon! 💐

2013mayo profile image
2013mayo

Oh poor you, hope you get better soon.My daughter’s partner and 2 grandchildren all had covid, all in the same house, my daughter was and still is negative 🤷‍♀️

Longtimer profile image
Longtimer

Hope you are on the mend now, it affects people so differently...my granddaughter mild, her boyfriend a lot worse, couldn't eat for 5 days!....my DIL now has it, they were altogether at Christmas....so glad we didn't go...now my son is showing signs....because of me we have zoomed all along....just hope it's enough....

Kendrew profile image
Kendrew in reply to Longtimer

It's so unforgiving isn't it! I don't even feel 100% confident with the results of the LF tests because I heard Tim Spector say it can take between 5 to 10 days for you to build up enough virus in your system for it to actually register a positive result on a test! So you could be negative one day but then find yourself positive the next! Strange times we're living in!

PMRpro profile image
PMRproAmbassador in reply to Kendrew

They reckon here you can be -ve in the morning, +ve in the evening!

Kendrew profile image
Kendrew in reply to PMRpro

That seems totally possible based on what Prof Tim was saying. Not enough people realise or know that unfortunately. 😕

HeronNS profile image
HeronNS in reply to Kendrew

That's why on the (extremely rare) times we've got together with family the past few weeks we've taken our tests just before meeting up. With the tests we have apparently the second line can be barely visible if beginning positive, but so far so good.

York54 profile image
York54 in reply to HeronNS

Yes, we all did LFT prior to meeting with family at Xmas. They were all negative , unfortunately as has been said ,you can be positive the day after!

Longtimer profile image
Longtimer in reply to Kendrew

Yes, my DIL said this, my son is tight chested and fuzzy headed, just like she started, negative, but 48 hours later positive, so it's there already to spread....I am sure some people who hardly know they have got it, even though positive still go out.... Some just don't care....

Kendrew profile image
Kendrew in reply to Longtimer

That's one of the things I find most difficult....accepting that there'll always be people who won't do the right or responsible thing!!

PMRpro profile image
PMRproAmbassador in reply to Kendrew

The messages have been crackers though - vaccines were never the total answer, only in combination with all the other measures. People don't understand, hear only that Omicron is less serious - and they didn't take even Delta seriously in the first place. Too many then insisted it was "just a cold" ...

Kendrew profile image
Kendrew in reply to PMRpro

Agree completely. I've cancelled almost a dozen get togethers with friends over last few weeks because they've had a bad cold!! I became so sick of hearing..."It's just a bad cold....my LF test is negative"!! NO!!....those tests are frequently inaccurate and most people who've said they just had a very bad cold will in actual fact have had covid!!

Koalajane profile image
Koalajane in reply to Kendrew

I wouldn’t pass on a cold to anyone though!

Longtimer profile image
Longtimer in reply to PMRpro

Yes, have said all along...no prime minister can control the human race....so it will be a long battle...

York54 profile image
York54

I had a phone call from the hospital today , I am entitled to a referral/triage for the treatment that is being offered. I declined as I don’t feel that ill. I don’t want anymore meds if they are not needed !

PMRpro profile image
PMRproAmbassador in reply to York54

You might not feel that ill now - might be a different case in a few days.

York54 profile image
York54 in reply to PMRpro

Please don’t say that ☹️☹️☹️☹️☹️ Hopefully not !

Longtimer profile image
Longtimer in reply to York54

Could you not get them just in case...

Kendrew profile image
Kendrew

I personally feel privileged and almost relieved to know I'm eligible for the antiviral treatment...subject to me being suitable for it of course. I completely respect your decision and understand your reason for turning it down, but I'm personally quite scared knowing that for some people, symptoms can develop and become much worse over the few weeks from infection.

As a person with a compromised immune system I can't be sure how much (if any) immune response I've mustered so it'll only be if I contract the virus that I'll find out how poorly I'll become. I don't really want to find that out so I have my PCR test ready and if I'm offered the antiviral medication then I will certainly accept it.

We will all have a different set of circumstances that will determine our choices and decisions and there's no right or wrong here....just what's right for us each individually.

I wish you a full and speedy recovery.

York54 profile image
York54 in reply to Kendrew

That’s your opinion , which I respect too . I also have mine so let’s end it there .

Kendrew profile image
Kendrew in reply to York54

I feel I may have offended you and if that's the case then I apologise. That would never be my intention ...I was simply trying to put another perspective on this issue by expressing my own thoughts on the matter. Hope you'll accept my apology?

York54 profile image
York54 in reply to Kendrew

No offence taken.

Exflex profile image
Exflex in reply to Kendrew

I’ve been sent the priority PCR too, and if positive will be considered for ‘new’ treatment. Reading between the lines I think it’s Remdesivir as Paxlovid hasn’t gained U.K. approval. The medicine needs to be taken within 5 days of onset (Remdesivir messes with the virus making multiple mutations designed to kill off replication - Paxlovid impedes an enzyme the virus requires). The speed and spread of Omicron transmission could mean we’re all going to get it, just a matter of when.What does one do with Pred dosage if you succumb? Is it a case of following the ‘sick day rules’?

My wife read on the Facebook group that some doctors are advising their patients to stay on 5mg (if that’s their current dose, as in fact it is for me) for “protection”. Anyone got thoughts on this?

Kendrew profile image
Kendrew in reply to Exflex

Hi Exflex.The information I was sent with the PCR test said the two types of treatment I'd be offered would be

Sotrovimab (Xevudy)- a biological medicine..also known as a neutralising monoclonal antibody, and Molnupiravir (Lagevrio)- an anti-viral medicine.

As for your pred dosage, I'll let others more knowledgeable advise you further.

Exflex profile image
Exflex in reply to Kendrew

Thanks Kendrew.In vivo trials using monoclonal ab’s show low neutralising properties, unfortunately. But the mutation enhancing Molnupiravir antivirals are about 50% effective to prevent severe outcomes. I note the US have not yet authorised the medicine because of the unknown risk of cancer sometime down the line. Personally I’d take it if offered.

Kendrew profile image
Kendrew in reply to Exflex

👍👍👍

PMRpro profile image
PMRproAmbassador in reply to Exflex

Protection against what?

Exflex profile image
Exflex in reply to PMRpro

Severe outcomes such as death.

science.org/content/article...

PMRpro profile image
PMRproAmbassador in reply to Exflex

Not sure that is generally advised - most comment suggesting it is from early in 2021 before reliable data had been collected.

covid19treatmentguidelines....

doesn't really agree - as I read it. Mind you - at well above 5mg, it isn't a question for me. But if it were that simple - they would give such a cheap and easily available drug to everyone - and they don't.

Exflex profile image
Exflex in reply to PMRpro

$750 for a 5 day course, I believe (2 tabs / day). I’ll have it offered, if and when I contract CV. I think it’s more ‘when’, not ‘if’.

PMRpro profile image
PMRproAmbassador in reply to Exflex

I was talking about the FB comment about pred - which is cheap as chips and widely available, unlike the anti-Covid drugs.

Exflex profile image
Exflex in reply to PMRpro

Sorry, my mistake.

I don’t really understand how 5mg dose is protective, assuming that one’s current dose. At 5mg, maybe the adrenals are earning their keep to some extent, but likely not responsive enough to deal with the cytokine response to Covid damage. I’m really out of my depth here, perhaps you could offer an opinion. (More than hypothetical for me as a) 5mg is my current dose and b) I think it’s only a matter of time until Covid gets most of us. Already my booster at 9w old is probably waning, and no talk yet about reboosting.)

PMRpro profile image
PMRproAmbassador in reply to Exflex

I think you just shrug and keep taking the tablets while taking all the effective non-pharmaceutical measures like masks and distancing plus avoiding crowds. I take sweeping comments like "5mg pred is protective" with a degree of scepticism - no-one has done the studies to know yet. Earlier we were being told pred put us at risk - just as they started using corticosteroids in management of Covid. Unfortunately we will find out what would have helped much later in the journey.

And while we aren't by any means perfect here - we do do a lot of homework in the scientific literature, we don't read the stuff that is probably fake news gathered from social media.

Exflex profile image
Exflex in reply to PMRpro

Thank you PMRpro, I really don’t want to bother you any more on this so deliberately no questions...

My ‘guess’: ideally one wants minimal Pred whilst CV19 is battling with the immune system, and once it’s in and the innate immune system reacts, as is the norm with pathogens, medics treat normal people with Steroids to help prevent damage, principally to the lungs. Same with us. So in summary: min Pred as you’re waiting your turn of a Coronavirus infection, then, depending on the outcome of the pathogen/immune battle, increased Pred to stop a cytokine storm. But hey, what do I know?!

PMRpro profile image
PMRproAmbassador in reply to Exflex

Sounds a fair summary to me :)

Herman99 profile image
Herman99

I also read that the majority of LFT instructions ask that we swab the nose only. An ER nurse reported that she swabbed her nose and received a negative result. She had symptoms so swabbed throat and nose 10 minutes later to see if it made a difference and sure enough positive. With Omicron it manifests predominately in the throat initially hence potentially evading a nose only swab. One to bear in mind when family are coming to visit. Not the best conversation to have but may help to identify the symptoms more accurately.

Frewen1 profile image
Frewen1

Bad luck, yes I have it too, although “it” is just presenting as an average cold - however, before I knew I had it I was with my 95 yr old mother for 48 hours … mercifully she is still negative. So, as you say, it’s quite selective…

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Frewen1

More random than selective maybe 😳….which makes it more difficult to contain.

Frewen1 profile image
Frewen1 in reply to DorsetLady

Good point… the problem is one blithely tests negative until suddenly, you don’t!

stayingstrong4me profile image
stayingstrong4me

Hi thought you might find my experience interesting pm r four years 2 my pre D my daughter and granddaughter both had bad colds before Christmas both did flow both negative Christmas day tested again both negative O spent Christmas day with them and they joined me boxing day tested next day still with cold still negative forward to 31 at With me going to their home daily a ten minutes walk away and them both still testing negative I started a cold next day 1 s t January while at their home I did a lateral flow test as did they They were both negative and I was positive they booked a ice test I had been sent a priority PCR test previously so I sent that I came back positive they both came back negative I have been given the antiviral pill Molnupiravir started last night Main symptoms are like a cold headache and very tired a mystery of how I caught it

Lookingforideas profile image
Lookingforideas in reply to stayingstrong4me

Hi there. I have ‘cold/flu’ tested LFTS… negative first day then positive on 3rd, sent my immunocompromised PCR yesterday. Tracking showing not delivered yet 🙄. Please let me know how you find the treatment tablets side effects wise as I assume if my PCR gets there in time I’ll be invited to have them. I still only feel a bit fluey but as Pro said, it can go downhill from here & im just interested in how the tablets are going. I hope you feel better soon 😊

stayingstrong4me profile image
stayingstrong4me in reply to Lookingforideas

In the priority booklet it said if1 hadn't heard result in 48 hours call119 and tell them it's a priority test and if positive 1 might get a new treatment so we did and got a positive result a couple of hours later then had to wait another 12 hour's they said wait up to 24 before contact from doctor who took health history and asked how 1 felt which was like a cold flu type headache and very tired she organised the molnupiravir to be delivered last night and 1 have had 2 doses so far it's twice daily 4 tables for 5 days and so far no side effects hope this helps and good luck

Lookingforideas profile image
Lookingforideas in reply to stayingstrong4me

So I got my positive PCR result yesterday in the evening (despite the Royal Mail tracker ‘losing’ my test in the Preston depot🙄) and an email from the NHS re the upcoming phone call to be triaged for the treatment within 24 hours, so it looks like the system is working - my symptoms are a bit less today than they have been the last couple of days - I don’t know if that’s a good sign?

stayingstrong4me profile image
stayingstrong4me in reply to Lookingforideas

Hi glad to hear you have a plan in progress and hope you find molnupiravir an appropriate treatment for you ,so far I haven't had a problem with them and feel a little better each day

Lookingforideas profile image
Lookingforideas in reply to stayingstrong4me

So the Dr called me this morning and asked for my symptoms & how I feel, what my steroid level was & how my MS is. I gave him a fairly detailed description of all and tbh I feel marginally better today than yesterday- he said taking it all into account it sounds like I’m doing really well and ‘symptoms are going in the right direction’ so he doesn’t think I need the treatment at all … but he also said its still only day 4 & so he gave me his direct line to call him tomorrow morning if I wake up feeling any different- then he can still prescribe- so- I’m off to bed now feeling virtually fine (way better than the days pre the positive test 🤷‍♀️ albeit still tired. I’ll update events tomorrow…

Ashington52 profile image
Ashington52

My son in law tested positive on Boxing Day evening I tested positive using a LFT 3 days later. I then sent off the PCR test that I had received, which returned positive, I then received a call from a Consultant at the RVI in Newcastle who said that anti viral tablets weren’t necessary. I would hardly say what I have felt to be just a cold! My husband who has been experiencing the same symptoms as me has been doing LFT for the past 5 days only had a positive test yesterday! It is all so variable!

Flosy profile image
Flosy

Hope you feel better soon.

AshPen9 profile image
AshPen9

Our Godson went to stay with in-laws in Tenerife for Christmas. Started to feel ill Christmas Eve. Tested daily but didn't test positive until New Year's Eve. There are benefits though, they put him in the spare room to isolate, which has beautiful beach/sea views. They left huge platters with wine outside his door. He sent me a photo of one, enough Serrano ham and cheese to feed at least four! Some friends, one of whom is very vulnerable, caught it from their daughter on Christmas Day. She had tested negative on the way there and positive on the way home.

Lookingforideas profile image
Lookingforideas

Ha, me too. Almost exactly same circs… stayed with family from 30th Dec to 2nd Jan. Everyone doing lat flow test daily and all negative- got sore throat through the night 1st to 2nd still negative but then feeling fluey and tested positive on third. Did my Pcr and posted yesterday but apparently Royal Mail are still holding it hostage in a depo somewhere this morning. So currently it feels like bad cold/slight flu with headache etc but not terribly bad … constantly dripping nose is annoying 🙄

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