To share interesting experience!: Good morning my... - MPN Voice

MPN Voice

10,706 members14,823 posts

To share interesting experience!

light profile image
11 Replies

Good morning my MPN family,

Yesterday my husband tested positive for Covid, then I decided to take test too and was positive. After that I went to contact my MPN team and request antiviral Paxlovid medication. I was not able to get through my MPN team as I was hoping then I called 111 and as I was talking to person there he asked me many Q's about my health. Earlier, before taking Covid test I was experiencing some stubbing pain in my left side of ribcage and during conversation with 111 person too like chest pain. He was alarmed and advised me to take GNT spry with I did and sent me ambulance because my heart attack history. So I went to. A&E and the did blood tests, Covid test and X-ray, etc.. Talking to A&E doctor and I told her that in the past when I had Covid I was given Paxlovid antiviral meds and she was surprised since she said that it doesn't work and it is not given any longer by NHS. I told her from my experience that Paxlovid work very well for me when I used it 3 time so far. After many hours being there I was told that I was negative for Covid and that all my tests are negative for any infection and any possible heart attack. This was a great news, yay, and I was quite happy to go back home.

I was left with the puzzle that at home test which was bought from our pharmacy I tested positive and when they tested me in hospital I tested negative. Did anyone have that experience and that NHS is not giving anymore antiviral meds Paxlovid to cancer patients? I am wondering what are we going to do to get us through Covid situation? This is concerning!

Written by
light profile image
light
To view profiles and participate in discussions please or .
Read more about...
11 Replies
hunter5582 profile image
hunter5582

While false negatives are much more common with home COVID test kits, false positives do occur. That is why follow up with the more sensitive PCR tests done in a medical setting are important. The doc I saw when I got COVID a few years ago said the home tests kits had a 40% error rate (false negative) in his experience. That might be a bit higher than reality, but it reflects why confirmation of a finding in the presence of symptoms is so important. Glad to hear that you had a good outcome.

light profile image
light in reply to hunter5582

Thanks, me too.

RoundTheWorld profile image
RoundTheWorld

Anecdotally in the UK in the early days of lateral flow home tests some tests seemed to give false positives if taken not long after drinking orange / lemon juice. That was a long time ago and I would hope the tests are more accurate now.

It also seems odd as your husband had already tested positive and it seems less likely you’d both have a false positive at the same time.

TTA_ profile image
TTA_

Sorry to hear about your experience.

Paxlovid is still efficient and should be prescribed. What you heard is probably local decisions to be cheap and convince patients Paxlovid is not needed. It is not the first time I hear this story from a vulnerable patient. There was even something in the news on how authorities were thinking to reduce the use of Paxlovid as it is too expensive.

So if you test positive again, make sure you get prescribed Paxlovid. It works just fine, both research and practice show.

Also, if you tested with a rapid test at home and they tested you with a rapid test at the hospital, your home test might have been more sensitive and theirs was not. Yours might have been saliva test and theirs a nasal swab test, and that makes a difference, as different variants of the virus replicate differently. Some are easier to detect in saliva, for example.

Rapid tests are known to give a lot of false negatives, and it is very unlikely that you, having someone Covid-19 positive at home, tested positive at home but negative at the hospital.

Given this discrepancy between home test and hospital test, my suggestion would be test again, using both a test for saliva and one using a nasal swab.

Regarding anecdotes of false positive, they are just that, anecdotes. People do not want to miss out on events, so when the test is positive, they still want to go said event, so they rationalise said positive test as being false positive. But they tested in the first place because they or someone around them felt unwell, so it is very unlikely their test is a false positive. Research on these tests done independently show they are very unlikely to give false positives, but they are much more likely to give false negatives.

light profile image
light in reply to TTA_

Thank you for your information and I totally agree with you. I had three times Paxlovid in the past and it worked miracles for me. As to the cost, my last experience with Paxlovid was in Slovenia in February this year, when I got script for it and paid at their pharmacy 1 Euro and 87 cents. I was totally shocked with that price.

RoundTheWorld profile image
RoundTheWorld in reply to TTA_

Hi TTA. I hesitated to comment re. false positives. I still test my family if in doubt and certainly don’t want to make anyone question the value of tests. It’s not always people sticking their head in the sand for an event though - in the v early days of return to school after lockdowns my son had a false positive on LFT - we kept him off, told school, they sent his class home and considered cancelling a (during the holiday) sports trip for other pupils, which would have been painful as it was one of the first that had been possible). Thankfully the follow up PCR came back quickly as negative. He didn’t go on to develop symptoms so either it was a false positive (the juice thing was suggested by another parent) or he had had an earlier mild case which we picked up late. We’ve all had Covid since and we certainly knew about it then!

Anyway - not trying to open a can of worms. I’m grateful for covid vaccines and tests and certainly keen to protect the vulnerable (even more now I know I’m in that category myself!). Wish you well.

TTA_ profile image
TTA_ in reply to RoundTheWorld

My comment was not directed at you personally at all. It was an observation of what people around me were doing and are still doing. Regarding Covid-19 in children and test accuracy, at least from whatever research is available, the tests tend to actually come more often as false negative than false positive.

Children have immune systems different from adults, and they will respond differently to a pathogen. What I could read is that RAT are more accurate in the first days of symptoms:

"To obtain more accurate results, we believe that performing the test in the first 3 days of symptoms will give more accurate results."

pubmed.ncbi.nlm.nih.gov/377...

I read the report on the potential interference of carbonated beverages on RAT performance and they refer to on purpose using carbonated drinks to make the test give a positive result. And in real life this is difficult to replicate with someone drinking juice, unless they rinse their mouth with juice and use that rinse for the RAT saliva test, but that might not give a positive test. In the studies the authors literally applied the beverage on the test itself to get a positive result. When they mixed the beverage with the buffer, there was no positive result.

ijidonline.com/article/S120...

ijidonline.com/article/S120...

TTA_ profile image
TTA_

Some countries care about vulnerable people more than others, it seems.

Where I live, they made it almost impossible for anyone vulnerable to get Paxlovid prescribed, almost exclusively out of being cheap. They just didn't want to pay for Paxlovid and more recently they have been also cutting access to vaccine boosters for anyone who is not very old. Luckily for boosters, some local health care prefers to use them rather than letting them expire, so more vulnerable people got boosted.

Cja1956 profile image
Cja1956

I agree with you that Paxlovid works really well. My partner and I both had Covid about a month ago. He took it first because he got sick first and then I tested positive and I took it. We were feeling better within three days.

Phelpsy profile image
Phelpsy

Hi regarding the Antiviral drugs

I tested positive in May this year after a holiday in Portugal. On my return I contacted my Consultant & after a total mess I made of asking for the Antiviral over the phone I left no name !!

So a week later I had a schedule blood tests & Explaining to the Consultant he was very cross

Saying I must have the Antiviral meds

And to make sure I leave the details needed for them to contact me ..Ooops :(

I had a really bad bout with Covid & my lungs were so sore ,,,

So yes we do still need the help with Antiviral Medication..💙

4 years ago I tested positive & had the meds within 3 hrs of ringing my Consultant they arrived by Motorcycle

💙 The NHS are Amazing x 💙

light profile image
light in reply to Phelpsy

Yes, same with me. We must have Antiviral meds!!

Not what you're looking for?

You may also like...

Ruxinitlib

I have been given an option of taking this instead of Pegasys interferon . However I have been...

A month into Pegasys, Australia …

An Update 😃 Now a couple of weeks later and all is well. I saw my haematologist and we were both...

Tilt Table Test

Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure rose to 185/110...

Pegasys - possibly closer to slowing progression than anything else?

Hopefully this is not an irresponsible header since may raise false hopes, especially for those who...

SCT journey update No.4

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last...