Hi, sorry for another covid post but I’d value your thoughts…
My question: Anyone out there with CLL had covid recently and not used antivirals and recovered ok?
Background:
I’m down with covid for the third time in 18months… the first time (Feb 22) I wasn’t yet diagnosed with CLL and rode it out fine, the second time (Nov 22) I had just been diagnosed so was prescribed Paxlovid (which I hated - the taste/dry mouth meant I could barely sleep/eat for 5 days) …. And now I have it again & am weighing up pros/cons of taking Paxlovid…
Overall health info: I’m 41yrs old, & (other than CLL) I’m healthy, fit, eat well etc… I’m on w&w & no other medication, I do get occasional asthma… I have 3 young kids (hence constant run ins with the virus) and have had two vaccines but after bad reactions haven't had any further.
Would love to hear your experiences & opinions as I weigh up pros/cons/costs/benefits of Paxlovid vs riding covid out…
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Courage_Love_Legacy
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Yes, twice and did not get the anti-virals either time. First time when I called the COVID number they stated that from my description of symptoms I was not I'll enough and to call back if I got worse.
The problem with their response is that by the time you do get sick enough, five days have passed and then they say you’re no longer eligible.
For me, they were happy enough just with the test being positive. The doctor I spoke to just said that the idea was to take Paxlovid before getting really ill.
I recently had Covid a second time when my immunity from my sixth Covid vaccination was running low after six months.
I had tried Paxlovid and it seemed to make me iller. Glands went up. Felt very rough. The specialist doctor advising me thought that I would have the same side effects if I took it again. So we agreed no this time. I took two weeks before I tested negative but I was no iller than an average dose of flu.
I had a chest infection at the same time and was successfully treated with antibiotics for that element.
I suggest you get some advice. I am in the UK and talked to the teaching hospital unit that dispenses Paxlovid in our area as an experimental drug.
Two weeks after recovery I went and got my seventh Covid vaccination. Hurray!
What kind of side effects did you get from vaccination? I spent a day or two in bed after my early vaccinations but was surprised at how little reaction I had to the latest one. Worth thinking through your decision I think 🤔
I had COVID twice. The first time I acted fast and got Paxlovid but the second time I did not think it was COVID , delayed testing and with further delays because it was a weekend it was too late for Paxlovid. I think I recovered faster with Paxlovid. I am still on and W with relatively low WBC and Lymph counts 15 years after initial diagnosis
Twice. First time I had Paxlovid which knocked me out for a week (hallucinations, etc.) and took me weeks to recover. Second time I opted for Molnupiravir and was better in a week. People seem to react differently to each of them.
I was prescribed Molnupiravir with my last bout of COVID at Easter. Started on day 3 after the positive test and had no side effects. I felt considerably better in a few days after taking it and had no ‘bounce back’. I had no anti virals for my previous COVID (about a year before when on W&W) and was laid up for over two weeks.
Sorry you're ill again. I'm now in my 5th week of testing positive still. Had Paxlovid on day 1 and then an infusion of Sotrovimab on day 14. I've been told that I can't have any more antivirals fo c6months, so now having to just deal with the symptoms. It may be different in your neck of the woods though.
I’m 64, got vaccinated twice in the beginning of Covid, and have since decided no more boosters. I have gotten Covid twice since then…and, luckily for me, it’s been like a mild cold for me and I didn’t even try to get Paxlovid. I’ve been in watch and wait for many years now. Everyone has to make their own decision, but I think you’ll be fine being young and relatively healthy and still on w&w.
I was unsure whether to take it as it meant I would have to cut back on other medication that I had only just started. After discussing it with the very helpful doctor at the unit we decided that I would probably be ok as I had had 6 vaccinations and on day 3 I had already started to feel a little better. He also gave me the option of leaving it one more day and I could still have it if I got any worse. It didn't. I have been on W&W for 10 years with very low numbers.
Hi KidSteel, Im on W&W. I got COVID twice, first time it was like a really bad flu. My mother who highly believes in freshly squeezed OJ and freshly made chicken broth, made me OJ & chicken broth everyday. The second time my doctor prescribed me Paxlovid, which I didn’t take. I was very fearful of the vaccines and decided not to get vaccinated.
Hi KidSteel - Ugh, sorry, such a drag! I worked hard to avoid Covid since day one, masking, distancing, declining invitations, etc. and finally planned a trip to Ireland (I live in NJ) last month and caught it there on the last day of the trip. Ofc I didnt mask - ate out, went to pubs, music, etc and thankfully it was a mild case. My doctor at MSK (was Dr Mato, now Dr Thompson) prescribed Paxlovid which I picked up from the pharmacy but bc I was feeling a little better everyday and never experience shortness of breath or chest pains, I never took it. Not sure it that helps you, bc everyone is different, but I was thrilled to have gotten over it on my own. Best of luck!!
Yes, I could not take paxlovid because of low GFR. I did fine, i really was only sick for like one day, fever for two days. I was in between treatments, my hemoglobin was under 10 but my oxygen levels never really dropped. Tested negative on day 12. Did receive the booster vaccine in October.
Thanks everyone for your experiences and advice. I'm so glad to know there are CLLers out there who are finding Covid relatively mild and they can recover on their own, and that there are others who the anti-virals and immunizations really support.
For me, this time, I decided to take Paxlovid as my husband has a really significant culmination of years of work happening this coming weekend and I need to be well so he can focus on & celebrate that; but if it weren't for that, based on all the encouraging stories here, I would have tried to ride covid out by myself.
Finding Paxlovid mouth less offensive than last time (I actually slept last night!) and also feeling much better this morning too which is great. Appreciate this community for your thoughts and care.
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