After being very careful I have succumbed to COVID. My first symptoms were on Boxing Day I then took a test the following day so am 3 days in. my husband has spent the morning on the phone and at long last has been told I can be given Paxlovid. He now feels that as I look a little better than yesterday and I feel a little better I shouldn’t take it unless I start to go downhill. My concern is the 5 day window. I don’t know if I’m going to dip and then it will be too late for it to be effective. He doesn’t think that happens with the Omicron variant as it did with Delta. Please can I have your thoughts.
should I take Paxlovid?: After being very... - CLL Support
should I take Paxlovid?
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G-F-T
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60 Replies
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What was the concern raised for NOT taking it? If you're suffering and need help to recover, that's what it is there for. Would it be worth the peace of mind to take it as a precaution given your CLL diagnosis? Web says paxlovid is for treatment of mild to moderate covid symptoms and for those at high risk for progression to severe symptoms.
I agree with everyone else, take it for sure if you are able. Just a side note, I was in Montana when I contracted Covid last summer. Driving home is 2 full days back home to Minnesota. I was going to miss the window from when symptoms started for the 5 days to get the RX from my doctor. She did say if I worsened I would make the timeline for Remdesivir infusion if needed when I got back to Minnesota. I did continue to improve each day and recovered on my own which was a relief, but if I could have gotten the Paxlovid in time last summer I would have definitely taken it!
gosh that must have been such an awful journey for you two days on the road when you must have felt as I do now. Glad you recovered. Thank for replying
Yes, it was quite miserable. I actually had to take 3 days getting back that time because I couldn't drive as far due to fatigue and feeling so awful. I was grateful to know I could survive it though. We had all been so terrified for so long. Wishing you a speedy recovery. Thank God we have these medications, antibodies😊 and vaccines now!
How did you isolate/avoid contact with others while traveling? I know a few people who car camp, but that would have been really difficult while ill.
It was difficult. We stayed in 2 hotels that we purposely found that were out of the way and didn't look like a lot of people were there. I was honest with the staff that I was ill and could very likely have COVID and to please be sure the cleaning staff wore masks and gloves and were very diligent in sanitizing. I believe both places left the room with windows open for an extra day. I was worried they wouldn't let us stay but they were both really good to us. I didn't reveal we absolutely had COVID but said it was a good possibility. Both hotels were like "there is so much illness out there right now, that we will just be sure to be diligent and thank you for alerting us". It turned out ok. We even picked up "to go" food at the local VFW at one of the places. We were heavily masked the whole time and I even told those people we were sick and to please sanitize their hands after handling my debit card etc. I feel we did the best we could with everyone. I needed to sleep at night without a terrible conscience bothering me!
lankisterguyVolunteer
Hi G-F-T,
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As 81ue says, why risk having a complication? You might not need it, but for me it is like wearing a seatbelt. I have driven for almost 60 years and was never in an accident, but I click the seatbelt every time I drive.
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The side effects are minimal, and likely only a metallic taste in your mouth.
You may not need it, but why risk being hospitalized or joining the hundreds of patients that die each day from COVID?
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Len
thank you for replying. I will definitely take it
I took it and I'm glad I did. Everyone around me with normal immune systems got way sicker than I did for way longer. So it probably helped.
I had Covid in October and got the Beblitovomab shot. It helped immensely. That is not being used against the new variants anymore but Paxlovid is. My hubby got that and it helped a lot. Just be careful that they are aware of what other drugs you are on in case of interactions. Paxlovid can increase the strength of certain drugs.
Hope you feel better soon!
thank you. It arrived yesterday evening so I have just had my second dose 🤞
The person checking that I could have Paxlovid checked for drug interaction possibilities and with the Haematology staff before agreeing to dispense it for me. I was told to stop my low dose statin for 8 days - I don't know if that was me-specific or a general advice.
I got asked about meds and also vitamin supplements which I do take a few of. Not on any meds but I decided to give the vitamins a break for a couple of weeks.
Exactly! My husband was NOT told to stop taking his statin and had really bad leg cramps while on the Paxlovid . My doctors team told me I shouldn't take the Paxlovid because I'm on Venetoclax (at the time the Beblitovomab was still an option) so when my husband started having trouble, I googled the interactions and realized he should stop the statin. No one told him. Can't be too careful and we have to manage our own care much of the time which is why this site is so helpful!
well done for getting it sorted
I am on Venetoclax and was never told to discontinue while on Paxlovid. no bad effects and it has been 4weeks I'm fine and I tested negative ever since I finished the 5 days.
You’re right. My husband has cll and was diagnosed three days ago with Covid. He went to the ER due to fever. The ER dr said he could not receive Paxlovid due to the interaction with the Calquence that he is on. His oncologist prescribed a steroid and thankfully he is doing much better.
good to hear that
my dad is on eliquis which is a blood clot medicine that has interactions. They had him reduce by half for 10 days to get put on paxlovid. They couldn’t reduce his medication for a short period of time? Hope he’s feeling better!
I wondered about that too but fortunately he is doing a lot better. He has really low platelets so not sure if that affected their decision.
I’m very glad he’s doing better! My dad is still in bed after 2 weeks.
thank you glad it helped your husband
I just got over Covid and didn’t take paxlovid. I did fine, one afternoon where I felt sick enough to go to bed but mainly it just felt like a bad cold. My kidney function is low which prevented me from taking paxlovid.
Gosh you were very lucky you must have had a really mild dose. I’m on day two in bed. Have decided to take Paxlovid hoping it arrives soon. Thank for replying.
Definitely a wise decision, especially if you feel this sick. My husband and I must be lucky, he never even got a fever and my highest temp was 100.6 one day. I am guessing the bi valent booster shot helped.
I didn't feel that bad in the beginning, started Paxlovid on the third day, however several days in, I didn't write them down, I had a very deep cough and thought to myself this is where the pneumonia comes in. I had a cough and congestion for a month after I tested negative. I have a friend in the hospital with Covid and Pneumonia.
finished paxlovid a week ago and very glad I did. Had every symptom under the sun. Was very effective and on day six I tested negative and felt pretty good. Unfortunately 5 days later had rebound Covid which can happen with paxlovid. I’m now on day 3 of quarantine (again 😞) and feeling ok. Unortunate to have it come back, but it’s been more like a really bad cold. Just be aware that this can happen! FYI, the metallic taste is pretty awful, but I did a lot of swishing with water and that seemed to help. Good Luck!
I am concerned about the rebound, I wonder what sort of percentage it occurs in. Still if it eases symptoms it’s got to be good.
I have taken Paxlovid three times. The first time I had a relapse and started a second dose on day two of rebound.Several months later I contracted Covid again and started another round of Covid.
I do think it’s worth taking, even with rebound. My symptoms have been pretty severe, so have to believe it’s kept me from being hospitalized. Week 2 and now lost taste and smell.
Hi,
I'm 7 months on from finishing O&V. Got Covid at start of Dec. NHS got me Paxlovid straight away & 6 days later was clear for 2 days & then back again. This is day 25. It is amild cold, with mainly a productive cough. I feel fine, but I wish it would up and (like 2022).
I tested positive to covid and have completed the course of anti vitals you mentioned. I was due to start Acalabrutinib the day I tested positive, but have postponed it as I need to get over this dreadful covid and all the add ons that have come with it! My poor depleted body seems as if it can’t fight covid too well as one would expect! Im so thankful to have access to these antivirals and antibiotics … covid I feel is not to be messed with if you’re not at 100% fighting capacity. 👍
I just tested positive today too, so was immediately interested in your dilemma. I had a very slight sore throat for 2 days before fever and feeling worse today. So I guess I'm really on Day 3? I'm fully vaccinated, 69 years old, and my husband is immunocompromised with CLL cancer. He had Covid last June and got Paxlovid and then had Paxlovid rebound. Ugh, not sure what to do...
mine started with not so much a sore throat but a not quite right throat. I’m also 69 and have had 6 inoculations. Paxlovid was delivered last night so I have taken two doses of Paxlovid and am feeling ok. No temperature and oxygen levels are normal. Just a cough and a general not well feeling. Am concerned about the rebound. If it’s your husband that has CLL will you be able to get access to Paxlovid? I do hope you recover quickly and you husband stays COVID free.
hello! Thank you for your reply. I'm starting Paxlovid later this afternoon (hopefully, if it gets delivered to the pharmacy). It wasn't hard to get it ordered from my doctor because my husband is also her patient so she knows of his immunocompromised status. So far my symptoms are like a mild flu/head cold, with some coughing. Oxygen level good and temperature in the 99's, kept down with Tylenol. I'm concerned about the rebound as well, since my husband had Covid last June, got Paxlovid (good, did not go to hospital), recovered fairly quickly, but had what we guess is "rebound Paxlovid" bc he tested positive for 20 days. But that's common, we've read, with cancer. I'll try it out. Hoping that you recover really quickly as well. Keep us posted on Paxlovid side effects..I'm a little nervous. 
I would take Paxlovid. You might recover without it but it would be faster if you did take it. Even though my case was relatively mild I took Paxlovid 3 days after testing positive and was over COVID in a week. I did not get a Paxlovid rebound
I had the same debate. I got first COVID symptoms 12/17 but didn’t test until 12/19 and got the Paxlovid evening of 12/20. I had 3 vaccines plus the bivalent so 4 total shots. I was feeling pretty rough but was worried about the paxlovid side effects. I ended up taking it and glad I did, although some of the non-serious side effects were awful—the Paxlovid mouth was unbelievable. Both I and my daughter who also tested positive & took the paxlovid had the awful taste in our mouths. I found rinsing with Biotene gave me a few extra minutes without the awful taste but that was about it as far as relief.
I also had a symptom I have yet to read about but definitely coincided with taking the paxlovid and stopped within 1 day of finishing the paxlovid—incredible itching, mainly in my scalp, abdomen/chest area & back and then finally concentrated in burning/itching in my feet that was really bad. I didn’t have a rash or even any redness at all, no skin changes —just terrible itching.
The feet ended up being awful for day 4-5 of the paxlovid and I used refrigerated Aloe Vera gel with lidocaine for relief at first and then used a concentrated Aveeno Oatmeal bath to soak them and then some tea tree oil/shea butter combination after the bath to soothe them as well. Both the aloe and the oatmeal bath helped.
Those two side effects were intense but went away the day after I stopped the paxlovid. We tested negative in one week and I have some minor lingering symptoms but nothing too bad. Best of luck to you.
sounds like you had some pretty awful side effects. Thanks the warning if I have any issues I’ll get the Aloe Vera gel in fact I think I have some 👍
My husband had Covid in July & received Paxlovid by day 3. He took it & on day 5 was washing the fence down. Never experienced bounce reported by some. He was grateful to have been given it & not find out how bad it might have become.
What do you have to lose by taking P? Why wouldn't you take it if it is available?
arrived yesterday and I have had two doses. My husband felt that it may be unnecessary as I started to feel so much better. My temperature is now normal as is my oxygen. I just have a cough and feel washed out so much better than I had anticipated 👍
glad you're feeling better. You need to finish the course though, as I'm sure you know. Not sure why your husband isn't keen on you taking the treatment. I had Paxlovid in June this year after my second bout of Covid. At that point I'd had 4 vaccinations. I had milder Covid symptoms second time around, didn't get a chest infection like I did with my first Covid bout, (which resulted in the first chest infection of my life!) Metallic taste was unpleasant, but bearable and I didn't rebound. Fingers crossed for you and wishing you a good recovery
paxlovid is intended to be taken days 1 to 5 when symptoms are mild. Not when they get worse. I had Covid in October and thought I was doing ok. An epidemiologist friend convinced me to get paxlovid. I got it on day 5. By then I was still pretty much ok but had developed a cough that was moving deeper. A day after having taken paxlovid the cough was gone. Took 10 days to test negative. Wish I had known whether my body would have cleared it without the paxlovid. But better safe than sorry. (I did have extreme leg pain for about three weeks - leg where I had had knee surgery and osteoarthritis - there are some studies linking Covid or paxlovid to that pain. But no doctor could or would say which was the cause, if any)
I took paxlovid, but unfortunately had the rebound. I did have all the vaccines and booster and Evusheld. I asked to get a second dose, so I believe it really does help. But my Dr. said not needed. Kept me out of the hospital. Good Luck.
Bill
Sure. I have to assume you’re husband is NOT a doctor. I suggest you call one for a professional opinion. Seems pretty straightforward to me.
I started it last night have taken two doses.
Take it if your Doctor says you can.
like you, after years of cautions, vaccine and 4 boosters, and 2 separate Evusheld doses, month ago, I had covid. Same day as 2 positive tests my doc put me on Paxlovid. Still felt really unwell for 4 days but doubtless better than I would have been I am sure. Still not fully back to my usual feeling of health. If your doc approves, take it!
hi I also just tested positive after 3years avoiding it. I’m on holidays in Canada and a positive result Boxing Day my husband Xmas day I was able to get paxlovid after a lot of running around not as easy when your away. I had 5 needles the new bivalent just before I left. My husband is now day 4 feeling better ready to go I’m a day behind him and still congested and coughing. Would love to just be able to sleep. Keep coughing like a tickle in my throat. I’m on day 2and 1/2 days of paxlovid. Feeling not too bad but very sore from coughing and still nasal congestion. Not sure if I can take antihistamines or sprays to dry up my nose while taking the antiviral so didn’t take it. Been self isolating in our hotel room another day or two to go. I’m hoping I don’t get a rebound are you still contagious if you have a rebound. Is the rebound as bad as when you got it. I have limited time before we go home. And want to spend it with our baby grandson. I got the paxlovid 2nd day of symtoms if you get a rebound do you get the paxlovid again.
Hi how rotten for you to be in Canada visiting your grandchild and then this to happen. Just relieved for you that you managed to get the Paxlovid and quickly too. I started taking it on day 3 so three days I’ve been on it. Got up this morning and had a shower and actually got dressed feeling so much better. Still staying in my bedroom as the children are home for Xmas, leaving today. I really don’t know about the rebound I am just hoping it doesn’t happen to me, or you. I am still testing positive. Do hope you feel better soon and can enjoy your time with the family.
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