Hi RSilver, I got covid in early May. Given 5 days of oral antiviral Molnupiravir from day two. Improved slightly, but gradually got worse. Following week I was admitted to hospital, requiring oxygen and IV medications. I was also commenced on Paxlovid for five days. I continued to be quite unwell so was given a further five days of Paxlovid. Three months later, I am still struggling with breathlessness, persistent cough and rapid heart rate. I am under the care of Drs at the post covid clinic at my local hospital. I hope you are improving now. Indie
Sorry to hear of your struggles. Thank you for sharing. I have former colleagues who are suffering from Long Covid. That is not pleasant at all. You have my thoughts and prayers for an eventual improvement. Wishing the best for you.Richard
Hi there! Going through the same exact thing right now! Even down to the nearly the same dates!
I tested positive July 26. Started Paxlovid that very day. Was feeling better in 1-2 days with very mild illness. By the 31st I was negative.
August 5th woke up with a sore throat and have been sick with the rebound ever since. I'm still positive (August 10th). It's still mild with mostly upper respiratory illness, no fever, no deep cough. Feels like a bad cold with some sinus pressure and lots of nasal congestion.
I did not get a second RX for Paxlovid though. I've read that most people have mild cases of rebound so another round of Paxlovid isn't usually necessary.
Hang in there. I got bebtelovimab July 22, day one of testing positive. Still positive on rapid test today. Moderate amount of upper airway congestion and sinus pressure ( started Augmentin).
I bet the augmentin will help. I took cefdinir because of a sinus infection and pressure in my chest where my node is (while having covid)! I knew if it turned into pneumonia I'd be as good as gone because the node was right where the breathing passages meet up. I tested positive on Aug 26,2022. Started paxlovid the same day. Went off Zanubrutinib for the 5 day period. Felt GREAT on the paxlovid! Started Zanubrutinib again, started feeling bad again. Cut back to half dose, still showing black on the covid positive test. Within three days being off meds, the positive line was a light blue and two days later i was negative and negative since. I have not restarted the zanubrutinib because of a possible upcoming surgery and don't want to keep starting and stopping.
My rebound felt like it was coming back with a vengeance.The Urgent Care Doctor and the Infectious Disease Specialist both felt it wouldn't do any harm, and the window of opportunity is 3-5 days for it to be beneficial. I didn't want to get worse and then wish I had taken the second round. Indie1234 mentioned how she got worse. My heart goes out to her.
Yes, my rebound is way worse than the initial infection, but thankfully still considered mild overall. It's very frustrating and I've wondered if I should have had a longer or second course myself. But, I guess that's not usually done. Glad they made the exception for you. Hope you're back to 100% soon! <3
Plan AOne option is to contact an infusion center that provides Remdesevir. In early onset Covid, this has been approved to be given in a single iv outpatient treatment for 3 consecutive days.
Plan B. There is an overabundance of Paxlovid. I am aware of many friends who had the rebound and their doctors gave them a second round.
Also, on line, you can find a pharmacy that has a Parm D on staff that participates in "Test to Treat" You can get Paxlovid from the PharmD right at the store if you take a list of your meds, the positive test result and list of medical conditions.
I know people aren't going to like or agree with what I'm going to say next, but I'm going to say it. Our CLL meds cut our immune system almost 100%. I never got sick until I started my meds in July. When I got covid i was really sick. When i started the paxlovid immediately for five days and stopped the Zanubrutitnib I felt so good, then restarted the zanubrutinib and rebounded and got violently sick and went on cefdinir for sinus infection and chest congestion. Stopped the zanubrutinib again and covid positive test went from black (!!) to a light blue within 3 days then was negative and has been negative since. I still haven't re-started CLLmeds, mostly because I might need a surgery and don't want to go on and off. I only had the original two vacccines back in 2021. No boosters or other vaccines since..
However my sister who also has CLL went right on monoclonal antibodies and did well and never rebounded - so, who really knows.....
I might agree with your statement if it was more along the lines of "I think *my* CLL med cuts *my* immune system 100%". I get about 1 infection a year since diagnosis, and my experience has not been anything like yours. I get assorted viral, fungal, and bacterial ones. On a med, or not. I had a nice 5 year remission, no meds, and my infection rate was about the same. So far, mostly skin and pulmonary system (sinus & lungs), with one UTI early on.
But to take your single experience, with a single med, shortly after your diagnosis, and try to extrapolate that to *everyone* with this disease? Where's the documentation for your statement? Surely you are not saying that this disease affects everyone the same.
absolutely not. It was my experience. It's just that almost every post is about side effects and. Illnesses and it makes me so paranoid to start again. I have a possible breast cancer issue to deal with so dealing with some of that tomorrow at oncologist. Don't want to stop and start meds. Not a good thing. Need to clear one up then go back on Zanubrutinib. But I truly have been healthy since I stopped. In my life that is the truth
I think the medication zanubrutinib helps keep CLL in check. Without the needed treatment, eventually our bone marrow would be filled with nothing but trouble. The medication does what it is suppose to do. That is stop bad B cells from propagating, and while doing so it also results in no good B cells. I think this is the reason why, some Doctors stop the medication during an infection.
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