No paxlovid, update : I just came back from a... - CLL Support

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No paxlovid, update

Alex830 profile image
25 Replies

I just came back from a fabulous trip visiting my sisters, one lives in France, the other in Italy. On the way back the plane was full of people coughing. Not surprising 2 days after returning, I tested positive for Covid. Called my oncologist but nurse told me he doesn’t prescribe paxlovid anymore because it doesn’t seem to make a big difference with this new strain. Also, with my ckd he feels it would harm me more than doing good. I don’t feel too bad, fever of a 101 and was told just to keep an eye on my fever and my oxygen levels and I could continue with my Venetoclax unless my condition deteriorates. I am lucky I got Covid on the way back and yes, wore a mask and had my booster, it was worth it though. Anyone recently used paxlovid and felt it made a difference. I wasn’t very sick the first time, basically one day in bed and that was it.

Update: my oncologist checked in to see how I was doing. Asked about paxlovid. He said he would give me a prescription if I wanted/needed it. He did say they see little difference in outcome with the current Covid variant with patients who take paxlovid and the ones who don’t. He still gives it to patients with low anc or a history of repeat infections/or on IVIG but I never have had an issue with either. He again mentioned it’s pretty hard on your kidneys and liver and having ckd you definitely want to protect what you have. I am doing fine, no fever after day three and all I am dealing with right now is congestion.

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Alex830
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25 Replies
Thundercat2 profile image
Thundercat2

Interesting to hear this Alex. I have been going back and forth about flying to a wedding in November and just can't decide if I want to risk it or not. Finished O+V in Feb of 23 and doing well. I don't want to jeopardize that! I have been hearing about quite a few people coming back from trips with Covid. Strange that even with a mask you got it.

I don't know about the current status of Paxlovid against Covid. It would be helpful to get some info on that. My brother who doesn't have CLL but has another blood disease couldn't get it either. He is 70. He recovered but it took awhile.

Hope you feel better soon!

Sunfishjoy profile image
Sunfishjoy

I’m recovering from a week long Covid bout now. Husband flew on four flights to and from a convention in Kentucky. He got sick right after and I followed two days after him. This is my third time getting Covid. And this variant is the worst. We did take Paxlovid but I don’t know if it made the difference or not. Now we are testing negative but both have scant appetites and are pretty tired. Out last booster was in March this year. I’m very happy you had a great time visiting your sisters and I hope you get better swiftly.

Hrdy profile image
Hrdy

I had covid about 5 weeks ago, had Paxlovid day 2, temp was over 40, within 3 hrs reduced to 38.5 and kept coming down, felt a lot better within 48 hrs . I heard about rebound affect after taking 5 day course but didn’t experience that. The reaction I had to meds was quite remarkable and well worth taking .

Dinasantos profile image
Dinasantos

sorry to hear you got Covid. What type of mask did you use? I also traveled to Europe twice this summer and I was lucky not to get it. I was very worried. I also traveled with paxlovid just in case. Per my Doctor paxlovid still helps…not sure why your doctor says no. Usually it’s a no if you’re on medications for the heart/ blood thinners etc.

Glad you had a good time and got it coming home and not while you were there. Europe still does not have paxlovid.

Feel better!

Alex830 profile image
Alex830 in reply toDinasantos

N95 but it was a 9 hour flight, I did take it off to drink and eat. I had a lady across from me who was coughing out her lungs. She used a mask, simple 3 ply one, while coughing but took it off when done and was constantly standing in the isle. No blood thinners but do have chronic kidney disease.

Dinasantos profile image
Dinasantos in reply toAlex830

Thank you 🙏🙏🙏

Mining_Guy profile image
Mining_Guy

My doctor told me Paxlovid is no longer effective, I used to get shots of it. Just arrived in Canada following time in Sweden and the UK. Off to Dubai in a few days. I am on A&O, two more Obin treatments left. I do not wear a mask on planes but make sure the vents are blasting on my face.

Wendt profile image
Wendt in reply toMining_Guy

that's interesting. I've always assumed that I should avoid the vents blasting on my face as it's (presumably) recycled air. It's all so confusing. I didn't catch Covid last time I flew, but was the only masked person on a 3 hour flight. Took mask off once to sip a drink. Surrounded by people coughing into the open air, not even into their hands. I developed a community acquired chest infection /pneumonia several days after getting home. GP thinks most likely caught on 'plane or airport (and it last for 10 weeks 🤔)

jendur profile image
jendur

I’ve finished the paxlovid and still feeling pretty bad and testing positive. Maybe it not working for the new variant? Yes I was on a flight, first time in 5 years and I masked. I guess I just wait it out now, any suggestions? Should I let my GP know?

NMgal profile image
NMgal in reply tojendur

Since we are special, with CLL I would let the gp know. I was not able to tolerate the paxlovid and did not feel like my normal self for a long time. Take it slow and rest. Best, Lorna

BCESmokey profile image
BCESmokey

Greetings

In W&W for approximately the last 2 years and now and trending towards treatment.

I am not entirely sure why your Doctor would say don't use Plaxovid. From all of the current Health Agency information I have read they all say that Paxlovid continues to be effective for mild to moderate COVID infections even the against emerging SARS-CoV-2 variants, including JN.1 and FLiRT variants.

I had COVID last January, started Plaxovid day 2 of symptoms and concurrent positive tests and it really helped.

Take care in your Travels.

oryoki profile image
oryoki

I caught covid the last week of July. Started using Plaxovid three days after the first coughs. From the first symptoms I was over dosing Vitamin C, Zinc, and Quercatin. My only symptom was coughing and the Plaxovid put that to rest for the five day regimen and cough symptoms never returned though I continued to remain susceptible to tiredness for another week.

CLLerinOz profile image
CLLerinOzAdministrator

Research from earlier this year showed that while Paxlovid might provide little benefit to the immunocompetent, it does still offer a benefit to those who are at higher risk of more serious illness like those who are immunocompromised.

healthunlocked.com/cllsuppo...

CLLerinOz

Unglorious profile image
Unglorious in reply toCLLerinOz

Always in appreciation for your valued opinion. Thank you

CycleWonder profile image
CycleWonder

I got Covid in early September and took Paxlovid for five days, stopping the Pirtobrutinib for seven days. I had extreme congestion and the Paxlovid appeared to mitigate the congestion. I tested negative on Day 7, and felt a little battered but OK. On Day 8 I felt great; back to normal.

Sadly, on Day 9, I tested positive again and did not test negative again until Day 20. The congestion returned with a vengeance after I tested positive and this time I had no help from Paxlovid. It took 4 days for the severe congestion to ease.

I never had a fever or bad cough.

I had IVIG therapy on Day 18 ( still testing weakly positive but no symptoms). I somehow got Strep the day after testing negative, and a cold following that.

Hopefully the cold will be the last of my ailments for awhile.

TruthJunkie profile image
TruthJunkie in reply toCycleWonder

Gosh, you really got it bad, CycleWonder! So sorry to read that. I have asthma, so the severe congestion would scare the heck out of me. Strep and a cold later, too much! Hope you’re feeling much better soon!

CycleWonder profile image
CycleWonder in reply toTruthJunkie

Thank you TruthJunkie. This time it is just a cold and I am getting better. Getting to sleep is the hardest.

montieth profile image
montieth

I had covid one and half years ago and was prescribed paxlovid. I got the rebound effect and was fatigued for a month. It didn't seem to make a difference for me as I was part of a group who all got covid at the same time after being exposed at the senior center. A friend who is over 70 recently got covid and she was told by her doctor that it wasn't necessary anymore for older people to take paxlovid.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply tomontieth

It wasn't appreciated until the much more thorough study of SARS-CoV-2, that rebound is not due to antivirals, but is a symptom associated with viral illnesses. Also, as CLLerinOz noted in an earlier reply that while younger, fitter people don't benefit from an antivial, older people and those with compromised immune systems have been found to benefit.

healthunlocked.com/cllsuppo...

Neil

Edalv profile image
Edalv

I tested positive today for the second time this year, the nurse prescribed paxlovid. I had no idea that it is not as effective with the new variant. I remember last time it took about 2 full days to make effect. We’ll see how I feel in a couple of days…

Edalv profile image
Edalv in reply toEdalv

I want to report that I tested negative for Covid last Thursday. I took paxlovid for 5 days… This time it was less aggressive than my last infection. Feeling much better than last Sunday. Thank you for your concerns… 🙏

Alex830 profile image
Alex830 in reply toEdalv

Honestly that is not much difference from what I experienced without paxlovid. Tested positive on Friday and tested negative a week later on Saturday. Three days of fever, by day 4 I felt fine. Walked every day that week, doing my 10,000 steps. Interestingly I had Covid in Dec of 22 and was really only sick for 2 days and never even had a fever. Glad you are feeling better.

Edalv profile image
Edalv in reply toAlex830

I am glad you were able to go without medication. I couldn't sleep forń days. I ended some help..n

Cgolen99 profile image
Cgolen99

I know it made a HUGE difference for me in 2022 but I have not have Covid since then. 🙏

Sepsur profile image
Sepsur

from what I understand - the anti viral May save you from experiencing the post viral malaise

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