Worrying about Covid and not sure who to ask for ... - PMRGCAuk

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Worrying about Covid and not sure who to ask for help

Tiggy70 profile image
36 Replies

I tested positive for Covid 13 days ago. As a vulnerable patient the NHS were very quick to react and within 24 hours I was taking the antiviral Paxlovid. (I was given a half dose because I have stage 3 kidney disease). I had minimal side effects from the drug and started to feel better very quickly. I took the five day course and by day 6 had a negative lateral flow test. Two days later the test was still negative but I began to feel quite poorly again. I tested again and the result was positive. I’ve reported my symptoms to the NHS as I think I have what is termed ‘Paxlovid rebound’. I can feel my body struggling to fight the virus. Thankfully so far my symptoms are fairly mild, dry cough, headache, deathly fatigue, some loss of taste and smell, nasal congestion.

Has anyone else experienced this? Do I just have to wait it out and hope my body is up to the fight?

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Tiggy70 profile image
Tiggy70
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PMRpro profile image
PMRproAmbassador

I think you probably need to get in touch with the NHS lot again - not sure what they do about Paxlovid rebound - is there still a Covid helpline?. If your GP is no help (which somehow I suspect will be the case) then wait for close of play at the practice and call 111 and ask their advice.

Tiggy70 profile image
Tiggy70 in reply to PMRpro

Thanks for your advice. I did ring 111 last Sunday when I tested positive again. I rang mainly to let them know that in some patients (like myself) a half dose of Paxlovid isn’t enough to get on top of the virus. I eventually spoke to a doctor who sympathized and actually she said didn’t know what the next course of action would be. That I should just monitor my symptoms and if I got worse speak to my own GP. I’m not even sure whether I’m still infectious after two weeks but to be on the safe side I’m going nowhere and not seeing no one. If I’m still testing positive after another couple of days I’ll contact my GP.

piglette profile image
piglette

It has been suggested that the rebound of COVID-19 symptoms following the end of Paxlovid treatment is likely due to insufficient drug exposure: not enough of the drug was getting to infected cells to stop all viral replication. It has been suggested this may be due to the drug being metabolized more quickly in some individuals or that the drug needs to be delivered over a longer treatment duration.

Tiggy70 profile image
Tiggy70 in reply to piglette

But what is supposed to happen when someone has Paxlovid rebound? There seems to be no advice out there. I’ve read that although patients tend to feel a bit worse when they test positive again thankfully they are not getting seriously ill. The only high profile case I’ve read about on the internet is Dr Fauci in the USA. He had Paxlovid rebound and was given a second course of treatment. I do feel like we are being treated like Guinea pigs and no one really knows for sure how to treat people!

piglette profile image
piglette in reply to Tiggy70

The truth is they don’t know! They are surmising all the time and I think a lot of fake news is present about Covid. I did not realise Dr Fauci had had Paxloid rebound. He is one of my heroes!

Tiggy70 profile image
Tiggy70 in reply to piglette

Yes, I like him too although he does have his detractors. I followed him quite closely at the start of the pandemic. My son lives in the US.

piglette profile image
piglette in reply to Tiggy70

He talked sense in the wake of Trump!

Tiggy70 profile image
Tiggy70 in reply to piglette

I agree! If we’d followed Trumps recommendation we’d all have been drinking Domestos !!

piglette profile image
piglette in reply to Tiggy70

With hydrochloriquine and chips.

Tiggy70 profile image
Tiggy70 in reply to piglette

🤣🤣🤣

Hosers2 profile image
Hosers2 in reply to piglette

😎Hey! Don’t knock Hydroxychloroquine too much. I replaced my Prednisone with Hydroxychloroquine in Feb 2021, AND had all four Covid shots available in the US. I figured I had covered all the bases. Not so!

Still got Covid last month. And all Paxlovid did was give me a horrible, bitter taste in my mouth for five days straight. And. . .rebound Covid.

PMRpro profile image
PMRproAmbassador in reply to Hosers2

So it obviously doesn't do much against Covid!

Hosers2 profile image
Hosers2 in reply to PMRpro

🤪Yea. Neither the shots or the HCQ prevented Covid. (Paxlovid didn’t work either).

My wife and I were just exposed again Saturday by a family of three who showed up to a wedding in Edinburg sick. So we will see if having the shots, Paxlovid, and before and after cases of Covid prevents us from getting it again.

PMRpro profile image
PMRproAmbassador in reply to Hosers2

How irresponsible - if you are unwell these days, you HAVE to assume it is Covid until proven otherwise and LFTs are just unreliable .

Hosers2 profile image
Hosers2 in reply to PMRpro

Agreed. We found out that they were sick just as we were leaving the second day of three day’s festivities (at a castle outside Edinburg). All three tested positive the next day (Monday) and couldn’t show up for the actual wedding. None wore masks. And they are from NYC. Should have known better.

PMRpro profile image
PMRproAmbassador in reply to Hosers2

Just a little "do" then!!!

Knip profile image
Knip in reply to Tiggy70

😅 Not wishing to make light of your problem, Tiggy, but your reply made me chuckle, bless you. I really feel for you as you struggle to get some answers. I really hope that you will be feeling better soon, x

Tiggy70 profile image
Tiggy70 in reply to Knip

Thank you, I totally agree with you. I always tend to make a dog’s dinner out of things when I get the bit between my teeth! Two animal analogies there🤣. I’ve decided to give up trying to get answers. I’m going to focus my energy into getting better. I felt hungry tonight for the first time in 14 days. I fancied a Chinese takeaway so that’s what we did! Yummy🤗

PMRpro profile image
PMRproAmbassador in reply to piglette

These things could be said to be relative!!!

tangocharlie profile image
tangocharlie

I've just had Covid but the doctor who rang me back from the 111 line said I didn't need anti-virals because my sysmptoms were mild. I asked if he was sure because I was classed as ECV Extremely Clinically Vulnerable, and he said that entitles you to treatment but doesn't mean you need them. I'd be interested to know then why they gave you anti-virals, did they give a reason? Just curious, don't feel you need to divulge specifics. it took me 19 days of testing positive and on day 20 the line was very faint and barely there so I took that as almost negative. I will check again in a few days to see if it has actually finally gone. All the best for a speedy and full recovery

Tiggy70 profile image
Tiggy70 in reply to tangocharlie

Like you I was classed as extremely clinically vulnerable. I did my lateral flow test from the box I was sent with my name on from the NHS. I was quite ill on the first night after my positive test and was terrified of going into hospital. I had a phone call the next day from the NHS. I believe she was a nurse practitioner. She discussed my PMR, medications and other health issues and told me I needed to take antivirals. (A half dose because I have stage 3 kidney disease). I must admit I didn’t question her and I was relieved to get my hands on them! I asked about upping my prep and she said no. I took Paxlovid for 5 days as directed and tested negative on day 6 and day 8. I felt ill again on day 10, took another test and it was positive. I’m so pleased you are now getting ‘almost’ negative results. I hate that this disease is still in my body😫

Exflex profile image
Exflex

The rebound is a common complaint. I’m guessing because I don’t know, but it’s so common that it’s likely the drug affects a high percentage of virus in the body but it only takes a few percent that evade Paxlovid for them to replicate and cause the rebound. Under normal circumstances you’ve got to wait until the T cells mop up the tenacious stragglers. Presumably you’ve been monitoring your oxygen levels and know when to ask for help (an NHS doctor eventually got in touch with me at day 10 and said I wasn’t eligible because I’m on 3mg Pred but to contact 111 if O2 fell to 92%.

Tiggy70 profile image
Tiggy70 in reply to Exflex

From what I’ve read Pfizer we’re initially saying that Paxlovid rebound was rare. Now that it’s more readily prescribed cases have gone up. Thanks for the note on monitoring my 02 levels. I’ve been checking every couple of days. Normal for me is around 94% and that so far is unchanged.

Exflex profile image
Exflex in reply to Tiggy70

I walked up a flight of stairs yesterday and nearly passed out. Usually my O2 is 98% or even higher, but at 95% I can feel the difference. Not to be taken lightly.

PMRpro profile image
PMRproAmbassador in reply to Exflex

Mine rarely gets above 95% unless I am deliberately breathing deeply! Not Covid ...

Tiggy70 profile image
Tiggy70 in reply to PMRpro

I can get mine up to 97% if consciously take deep breaths. As soon as I stop the deep breaths it dips back to 94%.

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

Same here

Knit11 profile image
Knit11

It is known in the US that COVID returns for its duration after Paxlovid. Some people refuse to take it for this reason. The pharmaceutical company is aware of it and claims it happens in 2% of cases. It seems that it happens to almost everyone. Happened to my husband. He got better after 5 days.

Tiggy70 profile image
Tiggy70 in reply to Knit11

I didn’t know about the rebound until it happened to me! I’m not even sure what day I’m at at the moment. It’s 14 days today since I first tested positive but I had a couple of negative tests in the middle. With PMR added to the mix my body is struggling quite a bit. I’m telling myself that I could have been worse without Paxlovid but I’ll never know for sure.

Knit11 profile image
Knit11 in reply to Tiggy70

I am sorry to hear that you have such a difficult time! My husband doesn't have PMR and was feeling pretty lousy in the days after Paxlovid. He felt that he would have been better off without it, but like your thinking, who knows?

I wish you to get well ASAP!

Tiggy70 profile image
Tiggy70 in reply to Knit11

Thank you 🌺🌺

Frenchduck profile image
Frenchduck

Hello Tiggy70

My story is similar to yours and some of the others. I had covid symptoms on 9 June and tested negative that day but positive the next day - LFT followed by PCR. My doctor (in France) phoned me to say he was leaving a prescription for antivirals at the reception in the health centre. He told me to delay my regular Tocilizumab injection for 10 days. He said there was no need to do any further tests and after 7 days I could go out and about again.

The first 3 days were bad especially the sore throat and not being able to swallow and the Paxlovid tasted like poison. I took the full dose for 5 days. By 14 June I felt improvement and I had a negative LFT on 16 June. I was very relieved just to be left with a slight cough and the extreme tiredness had gone and I was feeling quite well. I believed that part of the reason for that was the delay of my usual injection and this made me want to stop taking it or at least to increase the gap between them.

I wrote to my consultant who said I must take it in case of a relapse but she agreed to let me space them out after that by 17 days instead of 14. My common sense was telling me that surely it wasn't such a good idea to take it so soon after covid because if my body was still busy making antibodies against the virus then the Tocilizumab may interfere with that process. However, I did what I was told and after having 5 days of feeling really well I took the injection on 22 June.

The symptoms returned through the night and I tested positive again on 23rd. I tested everyday after that as I didn't want to be in contact with people while testing positive. In addition I felt extremely tired overnight and my boundless energy had turned into regular sleepiness and not being able to do very much. I had a strong red line until 30 June. After that it got fainter and I was negative on 9 July.

I wonder if other people who had the Paxlovid rebound went back to taking their usual medication or perhaps didn't stop it at all?

I found out more about the cases of antiviral rebound on USA websites and very little in Europe or the UK. I couldn't find anything to confirm my belief that the injection caused the virus to reactivate.

I hope you and all the other covid suffers on this forum get well soon and can enjoy a peaceful summer.

Tiggy70 profile image
Tiggy70 in reply to Frenchduck

Thank you so much for your reply. It’s good to hear that your body won over and eventually got rid of the virus although looking at your timeline it took a month. I haven’t stopped or changed any of my other medications. I’m currently on 8.5mg of Prednisolone for PMR and really don’t want to increase my dose. It’s taken me from October 2021 using a slow taper to get down from 10mg. Thanks for your support. I would be so lonely and worried without the support of this forum.

YuliK profile image
YuliK in reply to Frenchduck

Thanks

I’m still fighting Covid after 16+days

I fainted and landed on my hip and head. Fortunately the CTs showed I didn’t break anything, but I’m paining in hips back and head

Tiggy70 profile image
Tiggy70 in reply to YuliK

So sorry to hear that YuliK. Thankfully no bones broken. Wishing you a speedy recovery from your fall and Covid. 🌺

YuliK profile image
YuliK in reply to Tiggy70

Thanks Tiggy

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