Paxlovid--recent experience/info?

[Acadie]

Dh tested positive a couple days ago and will probably start Paxlovid this evening--prescription is at the drugstore. 

Dd20 has Long Covid so we're aware of long term complications and would like to do whatever we can to minimize those risks.

On the other hand, I've read a recent study found a much lower reduction in LC than earlier studies had found, and also that it's less effective with recent variants.

Anyone have recent experience--let's say, this fall/winter--or up to date info? 

For now dh is on black seed oil, quercitin, melatonin, EPA, NAC, zinc, vits C, D & K. Would discontinue some of that for the course of pax. 

[PeterPan]

I have a friend who took the paxlovid and that was the end of her covid, boom gone. I took paxlovid, did two rounds for good measure, and I STILL had a recurrence. Now I don't know if the difference was how long she fought it vs. me? (I got the med sooner, iirc.) Nevertheless, I haven't bothered since.

It's fine to take it and it may or may not be enough to get you over the hump. 

Are you sure you want to discontinue your other things??? Zinc is ESSENTIAL while fighting covid and you're body is burning through tons of it. Even your iron drops, which is connected to the fatigue, heart issues, etc. Some of your B vitamins drop. I don't tolerate some of your list (quercitin, melatonin, etc.) so I don't take those. 

 

[section deleted by moderator as violation of board rules about medical information.]

 I wish my immune system had been strong enough to fight off what remained after the paxlovid and not have a recurrence. It was a documented, tested by doc with painful nasal swab, definite rebound. And paxlovid is so $$$ they don't keep you on it long. 

I hope it's enough for your person. Talking about preventing long covid is such an odd thing. I've had covid a ridiculous number of times now, and every time afterward I do better. I think it's because my docs are doing better about intervening aggressively sooner and I'm getting better at targeting what is getting depleted. Your methyls drop with covid, so the quercitin is going to supply them as will the melatonin if you want it. But the quercitin is a strong dose without a lot of harm. I usually take niacin, so when I get covid I find I feel better if I go *off* the niacin for a while to let my methyls stay up. My zinc gets drained so I end up taking 2-3 X my normal dose. (Normally 30mg a day and I add 1-2 more 30mg capsule.) It's been maybe 7 weeks since my last covid (yeah for real I put myself in crazy situations) and I'm still on the higher zinc. 

The paxlovid didn't hurt. It just wasn't enough for me. Wish it would have been because the idea was great. 

Btw, there's some discussion that antibiotics help covid. I don't *know* for certain where the data is, but I can tell you for me, as someone who has had pneumonia way too much, they're using 30 day courses of antibiotics. Last time I started that antibiotic promptly along with the kitchen sink and that was my best experience ever, basically like having a mild cold. So some docs are in the horrors, don't do that camp, but some of the docs treating covid and long covid a lot are getting pretty aggressive in that way. I'm really dreading what I'm hearing about the new virus in Ch*** that is resistant to a major antibiotic, sigh. That's a horrible, horrible thing.

[PeterPan]

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[Nart]

Tested positive Thursday night started Paxlovid Friday morning. Felt awful Friday but so much better Saturday. The only drawback (and I don't think that everyone gets this reaction) is the incredibly awful taste in my mouth that won't go away. No amount of brushing my teeth, gargling with mouthwash, or chewing gum makes it go away. It temporary gets better for about five minutes after I do that but then it comes back. 

[itsheresomewhere]

The two I know who took it recently had mixed results.  Both are healthy adults and one takes care of their elderly parent. They went to urgent care yesterday to confirm what they had and the physician prescribed it for them.  Both have had Covid before. The male noticed not one single difference taking it and the female says it made her worse.  Her PCP says it is not working on the new strains and only prescribes it in certain cases and he wouldn’t have for her.  

[EKS]

17 minutes ago, PeterPan said:

Btw, there's some discussion that antibiotics help covid.

My father is 93 and immunocompromised and has had covid twice.  Both times his doctor did not put him on Paxlovid and instead told him to take zinc and vitamin D.  When he wasn't improving with that, he gave him a short course of prednisone combined with a Z-Pak after which he improved dramatically both times.

[itsheresomewhere]

8 minutes ago, EKS said:

My father is 93 and immunocompromised and has had covid twice.  Both times his doctor did not put him on Paxlovid and instead told him to take zinc and vitamin D.  When he wasn't improving with that, he gave him a short course of prednisone combined with a Z-Pak after which he improved dramatically both times.

Same with my neighbor.  

[Mrs Tiggywinkle Again]

Doctors locally to me are rarely prescribing Paxlovid anymore, with the exception of patients who fall into significantly high risk categories.  They don’t feel the risks outweigh any potential benefits.

https://www.webmd.com/covid/news/20230922/paxlovid-weaker-against-current-covid-variants

[KSera]

1 hour ago, Nart said:

Tested positive Thursday night started Paxlovid Friday morning. Felt awful Friday but so much better Saturday. The only drawback (and I don't think that everyone gets this reaction) is the incredibly awful taste in my mouth that won't go away. No amount of brushing my teeth, gargling with mouthwash, or chewing gum makes it go away. It temporary gets better for about five minutes after I do that but then it comes back. 

Have you tried cinnamon gum or hard candies? I’ve heard anecdotally that those have done well for a lot of people. I’m sorry, that can be a miserable side effect. I hope you’re 100% better very soon. 
 

@AcadieWe’re in the group that would do Paxlovid because any reduction in long Covid risk is worth it for us. But, I wonder also if Metformin is an option for you there? Anecdotally, I do know someone with a very recent infection who took Paxlovid and rapidly felt better with no rebound, but it was recent enough that I don’t feel like any call can be made as far as whether it prevented long Covid. That can take awhile to know (as I know you know). That was that person’s first Covid infection. I’m curious if the way paxlovid is performing currently is moderated in anyway by the person’s Covid infection history.

[Anne]

A friend of mine in her late 30’s just had Covid and took Paxlovid b/c she is immunocompromised.  She felt much better very quickly.  The fatigue lasted a couple more days.  

Anne

[annandatje]

I took two doses, both of which made me vomit.  Discontinued using.  Tested positive for three weeks. 

Husband able to tolerate paxlovid.  He got a negative test result in less than two weeks.

[wathe]

The state of evidence for paxlovid is poor.

There are only 2 RTCs to date that I am aware of.  The first, EPIC-HR,  done in unvaccinated covid-naive high-risk patients showed benefit, but there were some quite serious limitations (esp disease-specific mortality/hospitalization rather than all-cause) and was pharma-funded, pharma-designed, and pharma-run, and has not been replicated.  Also, unvaccinated covid-naive high-risk is a population that likely doesn't exist anymore (or is very small).  The second, EPIC-SR, also pharma-funded/designed/run,  was done in mixed population including both vaccinated plus at least one at risk condition patients,  and unvaccinated without at-risk condition patients,  did not show benefit and halted for futility, and was not published (result available by press release only).  

All other pax studies, for both acute and long-covid outcomes, are observational and must be interpreted with caution.  

In non-pandemic/emergency circumstances, this drug would likely not have been approved; the state of the evidence is too poor.

I think it probably doesn't work, at least not clinically meaningful benefit.  

The trade-off is multiple potential serious drug reactions, necessitating altering dosing or stopping other necessary meds for co-morbidities (why all-cause mortality/hospitalization outcome is so important! - if, say, anticoagulant was stopped and pt then died/hospitalized for a stroke as a direct result of stopping anticoagulant in order to rx pax, this outcome would have been missed in the above studies with covid disease-specific outcome measures)

I, personally, would not recommend it for my own vaccinated elderly parents.

[KSera]

38 minutes ago, wathe said:

All other pax studies, for both acute and long-covid outcomes, are observational and must be interpreted with caution.  

We need more data on the impact on long covid for sure--the initial two studies of that were both very encouraging, but a more recent one showed a much smaller effect. But still, long covid is such a bad outcome that for someone who didn't have any contraindications or drug interactions at play, it seems worth trying based on current data for long covid reduction, since there's not much else we have (with the major exception of metformin, and if a doctor would prescribe that instead, I'd do it).

[Matryoshka]

24 minutes ago, KSera said:

We need more data on the impact on long covid for sure--the initial two studies of that were both very encouraging, but a more recent one showed a much smaller effect. But still, long covid is such a bad outcome that for someone who didn't have any contraindications or drug interactions at play, it seems worth trying based on current data for long covid reduction, since there's not much else we have (with the major exception of metformin, and if a doctor would prescribe that instead, I'd do it).

That's what I figured.  Dh and I both took it - we didn't have any drug interactions to worry about.  I also wonder, for those who have drug interactions, where you have to take only half the recommended dose and/or stop taking other meds that they need for other conditions, if that affects how effective it is.  I don't think I would stop important meds to take it.

I was waffling on taking it and I googled around and found an article that quoted (yes, a retrospective) study (from last March, I think? - and I think included many vaxed patients) saying it did seem to reduce long covid - .  This was the article.  Here's another on it.  And for me, I figured, what was the downside.  I do know a couple of people who only took one dose and quit because the mouth-taste side effect was so bad, but that seems to show up immediately after that first dose, so decided to give it a go.  Dh and I just had a vague coppery taste, nothing too bad.  Dh did get the rebound fun, though.  He did go out right after recovering the first time and haul logs around the yard.  I do think maybe he shouldn't have done that...

[KSera]

21 minutes ago, Matryoshka said:

He did go out right after recovering the first time and haul logs around the yard.  I do think maybe he shouldn't have done that...

Yeah. Resting as much as humanly possible is what I would recommend for everyone for several weeks after contracting. Obviously that’s not possible for everyone (which may play into the demographics of who is more heavily affected by long Covid). I hope he’s feeling better now (and still taking it easy!)

[Nart]

54 minutes ago, KSera said:

We need more data on the impact on long covid for sure--the initial two studies of that were both very encouraging, but a more recent one showed a much smaller effect. But still, long covid is such a bad outcome that for someone who didn't have any contraindications or drug interactions at play, it seems worth trying based on current data for long covid reduction, since there's not much else we have (with the major exception of metformin, and if a doctor would prescribe that instead, I'd do it).

I had to quickly decide whether or not to take it Thursday night when I tested positive. Quickly researching I found it is effective in reducing serious complications and might be beneficial against long Covid and might lead to testing negative sooner. Last time I got Covid it took a month until the brain fog went completely away. 

Another consideration is that since it is currently free in the US I decided there was no downside so I called my doctor's office first thing Friday morning and they squeezed me in for a televisit. My doctor recommended and sent in the prescription  right away (so glad my 16 now drives and could pick up the prescription at lunchtime!!!!).

However, Paxlovid is NO longer going to be free in the coming weeks or months for everyone in the US as the stockpile the government bought dwindles. It looks like if you have Medicare or are uninsured you will still be able to get it but it is going to go into the commercial marketplace so I predict if you have insurance it will be harder to get since Pfizer is pricing their five-day course of Paxlovid at around $1,400. So the copay hopefully will be reasonable but I think insurance is going to make it harder to get so easily. 

Overall,  I am so glad I took it because I am feeling better (besides the absolutely disgusting aftertaste that doesn't go away). I am curious when I will start to test negative. Last time it took until around day 14 or 15. I am hoping by taking Paxlovid I might be somehow less contagious sooner so no one else in my family gets Covid. 

[wathe]

1 hour ago, KSera said:

We need more data on the impact on long covid for sure--the initial two studies of that were both very encouraging, but a more recent one showed a much smaller effect. But still, long covid is such a bad outcome that for someone who didn't have any contraindications or drug interactions at play, it seems worth trying based on current data for long covid reduction, since there's not much else we have (with the major exception of metformin, and if a doctor would prescribe that instead, I'd do it).

 

28 minutes ago, Matryoshka said:

That's what I figured.  Dh and I both took it - we didn't have any drug interactions to worry about.  I also wonder, for those who have drug interactions, where you have to take only half the recommended dose and/or stop taking other meds that they need for other conditions, if that affects how effective it is.  I don't think I would stop important meds to take it.

I was waffling on taking it and I googled around and found an article that quoted (yes, a retrospective) study (from last March, I think? - and I think included many vaxed patients) saying it did seem to reduce long covid - .  This was the article.  Here's another on it.  And for me, I figured, what was the downside.  I do know a couple of people who only took one dose and quit because the mouth-taste side effect was so bad, but that seems to show up immediately after that first dose, so decided to give it a go.  Dh and I just had a vague coppery taste, nothing too bad.  Dh did get the rebound fun, though.  He did go out right after recovering the first time and haul logs around the yard.  I do think maybe he shouldn't have done that...

I see it differently.  The drug itself has risks, besides drug-drug interactions.  dysgeusia and diarrhea being the most common, followed by headache hypertension, malaise, vomiting.  Then more rare but serious risks: hepatotoxicity, hypersensitivity reactions and anaphylaxis, stevens johnson syndrome, toxic epidermal necrolysis, pancreatitis, bradycardia.  These may be rare, and any one individual's risk is small.   But, on a population level, we are absolutely causing harm with this drug, with very poor evidence for benefit.    Negative RTC done a population that best matches the patients prescribe to (vax'd with risk factors).    

(as an aside, Pfizer's failure to publish EPIC-SR trial will have downstream legal consequenses, I think.   It's tantamount to purposely hiding data that would harm their profits, and has caused harm)

[klmama]

A high risk relative had Covid recently and took Paxlovid.  No fever, no respiratory symptoms, just severe fatigue and body aches that lasted a full two weeks, despite testing negative after one week.  I don't know if the lack of fever and respiratory symptoms was due to the Paxlovid or if it was just a milder variant.

[PeterPan]

18 minutes ago, Nart said:

so no one else in my family gets Covid. 

I've been in some tight shared quarters while having covid and the main things for success in not sharing seem to be basic hygiene--don't cough around them, wash your hands, don't share water bottles or cups. The times I've controlled my cough I've been most successful in not sharing it. I saw some studies recently I think on coughing and spread covid. It sounds oversimple, but just sucking a cough drop, giving space, not coughing on/near people can affect how it spreads when you're in tight spaces. 

[KSera]

2 minutes ago, wathe said:

 

I see it differently.  The drug itself has risks, besides drug-drug interactions.  dysgeusia and diarrhea being the most common, followed by headache hypertension, malaise, vomiting.  Then more rare but serious risks: hepatotoxicity, hypersensitivity reactions and anaphylaxis, stevens johnson syndrome, toxic epidermal necrolysis, pancreatitis, bradycardia.  These may be rare, and any one individual's risk is small.   But, on a population level, we are absolutely causing harm with this drug, with very poor evidence for benefit.    Negative RTC done a population that best matches the patients prescribe to (vax'd with risk factors).    

I can respect that opinion and definitely understand someone deciding in that direction. We’re also very definitely causing harm by letting people just keep getting covid with all the attendant post Covid harm, so that’s where I’m coming from. I’m sure it depends on people’s history with long covid. Particularly for people who have already fought their way back from long covid once-often taking 1-2 years to get there—it seems worse to not even try to prevent it if they get reinfected, particularly when so many end up relapsing badly. The non-rare side effects aren’t as bad as long Covid. 
 

Again though, I hope to see more evidence for it one way or the other so our decisions can be better informed

[KSera]

3 minutes ago, PeterPan said:

I've been in some tight shared quarters while having covid and the main things for success in not sharing seem to be basic hygiene--don't cough around them, wash your hands, don't share water bottles or cups. The times I've controlled my cough I've been most successful in not sharing it. I saw some studies recently I think on coughing and spread covid. It sounds oversimple, but just sucking a cough drop, giving space, not coughing on/near people can affect how it spreads when you're in tight spaces. 

Counterintuitively, studies have shown that Covid spreads more when people are just talking than via a cough. The droplets produced when talking are much finer and hang in the air much longer than those in a cough which are larger and heavier and fall to the ground more quickly. Think of it like the difference between breathing out cigarette smoke versus spraying hairspray. Singing is even worse. I think you’ve just been very fortunate. Either you don’t shed a lot of virus when sick or those around you have not been very susceptible.

[PeterPan]

6 minutes ago, KSera said:

Counterintuitively, studies have shown that Covid spreads more when people are just talking than via a cough. The droplets produced when talking are much finer and hang in the air much longer than those in a cough which are larger and heavier and fall to the ground more quickly. Think of it like the difference between breathing out cigarette smoke versus spraying hairspray. Singing is even worse. I think you’ve just been very fortunate. Either you don’t shed a lot of virus when sick or those around you have not been very susceptible.

I've had covid 5 times now, so I'm sort of at the art of how not to give it to the people you sleep with or share a small room with, sigh. It's been very obvious when I was successful and when I was not and what happened.

So no, I didn't sit beside them and have chit chats. I gave space. I sucked a xylitol mint (for my teeth, no clue if it affects viruses), and I kept my mouth shut. I know, with as much as I gab here y'all assume I'm just nonstop in real life. 😂

Edited December 11, 2023 by PeterPan

[KSera]

46 minutes ago, PeterPan said:

I've had covid 5 times now, so I'm sort of at the art of how not to give it to the people you sleep with or share a small room with, sigh. It's been very obvious when I was successful and when I was not and what happened.

So no, I didn't sit beside them and have chit chats. I gave space. I sucked a xylitol mint (for my teeth, no clue if it affects viruses), and I kept my mouth shut. I know, with as much as I gab here y'all assume I'm just nonstop in real life. 😂

I’m just sharing for others reading, because if everyone assumes they aren’t going to spread to people in the same room just by doing that, even more people will be infecting others. Because it spreads through aerosols that hang in the air, even across rooms. 

[knitgrl]

I'm doing chemo pills at home, so my immune system is compromised. I got COVID in late August, and started taking Paxlovid maybe 2 days after symptoms. So far, I've had COVID about once a year. My experience is that it gives me a singular, miserable type of headache, and the Paxlovid stops the headache, which is a mercy. I was sick for about 10 days.

As for the rotten grapefruit taste in the mouth, it tapered off after each dose. I would make sure I had eaten *before* taking it, so as to make the experience was as pleasant as possible.

[gardenmom5]

I was given paxlovid last year?   anyway - pick up some red hot tamale candies.  seriously.  That stuff made the most horrific taste in my mouth . . . then dudeling decided he liked the candy and ate them . . . hard glare

 

also took zinc, vitC, olive leaf, allicin, and some other antimicrobial immune supports.  I have EBV, and I take them for that too. (and they help)

[iamonlyone]

I just read through this thread again, as we're trying to decide whether to request Paxlovid (only risk factor is age: 57). Any new updated research or additional thoughts since December, anyone? (Sorry if I have missed pertinent info in the Omicron thread)

[Harriet Vane]

I took Paxlovid just recently for Covid. Other than the icky taste in my mouth it wasn’t bad. I did have a rebound illness but I think that’s because 5 days isn’t always enough. Just like sometimes one round of antibiotics doesn’t always kill off infection. I think the evidence for efficacy is solid and I also appreciate the evidence that it tamps down long Covid risk. If I get sick again I will take it again.

[wathe]

Recent-ish evidence summary.

I personally (50's, vaccinated, otherwise healthy) wouldn't take it.   

[KSera]

14 minutes ago, wathe said:

Recent-ish evidence summary.

I personally (50's, vaccinated, otherwise healthy) wouldn't take it.   

I don't see any reference to the long covid studies in this summary. Those have varied quite widely in how much impact paxlovid has in reducing risk, but many have shown a significant risk reduction. I think for non-elderly folks, it's the long covid risk reduction that is the main reason for taking it. I don't know many otherwise healthy people who are worried about a poor acute outcome from covid, the concern is the long term.

[KSera]

3 minutes ago, KSera said:

I don't see any reference to the long covid studies in this summary. Those have varied quite widely in how much impact paxlovid has in reducing risk, but many have shown a significant risk reduction. I think for non-elderly folks, it's the long covid risk reduction that is the main reason for taking it. I don't know many otherwise healthy people who are worried about a poor acute outcome from covid, the concern is the long term.

Looking further, I see the summary is written by an ER physician. I can understand an ER dr is going to have a bias toward focus on the acute stage of covid. I also see a couple comments in his one piece regarding long covid I can find (the metformin one) that further indicate long covid isn't something he has expertise on.

[wathe]

20 minutes ago, KSera said:

I don't see any reference to the long covid studies in this summary. Those have varied quite widely in how much impact paxlovid has in reducing risk, but many have shown a significant risk reduction. I think for non-elderly folks, it's the long covid risk reduction that is the main reason for taking it. I don't know many otherwise healthy people who are worried about a poor acute outcome from covid, the concern is the long term.

Yes, acute covid.

I think that the long covid data is still very mixed.  I haven't seen anything that I would consider convincing.  Lots of observational studies, mostly with self-reported data, with both positive and negative outcomes.

 To be fair, this will be near-impossible to get great data on -- PCC definition is very broad, and includes many subjective symptoms, with pathophysiology not yet well defined (and I think long covid/PCC term probably covers a number of different things, each not yet well defined, and perhaps with different underlying pathophysiology) -- it's still a bit of a messy basket of who knows what.

 

[wathe]

It is formally indicated for acute covid illness.  Prescribing for prevention of long covid is pretty far off-label, and would be a speculative practice.   Also maybe not medicolegally defensible (outside of a clinical trial) if there is a poor outcome.

I'n in a non-US healthcare environment though.   We are prescribing a lot less paxlovid here than in the US, I think, with tighter qualifying criteria.

[wathe]

Is anyone aware of any prospective randomized trials of paxlovid for long covid/PCC?

One of the problems with all the observational cohort studies that I'm seeing is that the selection bias is huge.  People who seek paxlovid treatment may do better than those who don't, but that may have nothing to do with the paxlovid itself -- those who seek paxlovid were likely to have better outcomes regardless.   

Paxlovid seekers tend to be health-aware, and have the resources to get a test, see a provider, and fill a script, all within a 5 day window.  Those seem like small things, but are indicators of social determinants of health that are tied to good outcomes, which is huge.

[KSera]

19 minutes ago, wathe said:

It is formally indicated for acute covid illness.  Prescribing for prevention of long covid is pretty far off-label, and would be a speculative practice.   Also maybe not medicolegally defensible (outside of a clinical trial) if there is a poor outcome.

In the US, it’s pretty common for people with long Covid to get Paxlovid if they get reinfected. It’s the kind of thing where the stakes are so high that barring indications that it’s doing more harm than a repeat Covid infection, and given the lack of treatments for long Covid, it’s understandable for people to try something that some studies have shown reduces the risk significantly (while knowing that at least one didn’t). Honestly, I think the calculus only doesn’t seem worth it if someone thinks they for some reason are immune to a debilitating case of long Covid. Your medico-legal point is well taken, but for some reason I’m not seeing that being a concern here at this point. Perhaps since it’s approved for high risk patients, and a patient with pre existing long Covid is by nature high risk. 

[KSera]

41 minutes ago, wathe said:

Is anyone aware of any prospective randomized trials of paxlovid for long covid/PCC?

One of the problems with all the observational cohort studies that I'm seeing is that the selection bias is huge.  People who seek paxlovid treatment may do better than those who don't, but that may have nothing to do with the paxlovid itself -- those who seek paxlovid were likely to have better outcomes regardless.   

Paxlovid seekers tend to be health-aware, and have the resources to get a test, see a provider, and fill a script, all within a 5 day window.  Those seem like small things, but are indicators of social determinants of health that are tied to good outcomes, which is huge.

There are some being run currently. Yale is doing one. They’re wanting to see if a longer duration is helpful as long Covid treatment since, anecdotally, there are some people with long Covid that have temporary symptom resolution while taking Paxlovid. This would go along with the viral reservoir theory. 

eta: here’s the link for recruitment for the Yale one: https://medicine.yale.edu/cii/research/paxlc-study/

I see the selection bias in both directions with the Paxlovid for long Covid reduction studies I’ve read. The one that showed no effect was also observational, and I would expect those people who know they are at higher risk for long Covid may be more likely to seek Paxlovid. This is one that really does need an RCT. 

Edited March 19 by KSera