I have CLL that became active along with Autoimmune Hemolytic Anemia (AIHA) in 2020. I was treated and went into remission. This spring I again had AIHA and was treated with Prednisone for about 4 months, ending the first part of July.
16 Days ago I contracted Covid for the first time and was treated by my oncologist with a "renal" dose (not as strong a dose) of Paxlovid because I have a mild case of Chronic Kidney Disease. My symptoms, (similar to a cold or sinus infection --wet cough, nasal drainage, stuffy head---got better after the 5 days of doses of Paxlovid. I have continued to test positive for Covid.
However, a couple of days following that the symptoms were back, a bit more pronounced with the addition of off-and -on fever. I called my oncologist asking if this was unusual (16 days of something like a significant sinus infection) and if there was anything else I could do. His recommendation was to give me another round of Paxlovid to take.
I am a little leery of doing this. Does anyone have any experience with two rounds of Paxlovid or with Covid symptoms that remain strong over 16 days or any thoughts regarding strategies to get over this?
Thanks,
Dodger47
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Dodger47
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I really hope you get better soon,l contracted covid 2 weeks ago l has 5 day course of paxlovid, l still feel so fatigued now,l tested negative after a week,my temperature and BP is still quite low,l haven't answered your question but l also took the renal dose,trying to build my strength up slowly, get well soon.x
Dodger47, I don't have any experience with a second Paxlovid dose, but I do have experience with a way-too-long Covid infection.
I’m five weeks post-initial Covid infection and still testing positive with fever. I contracted Covid as a result of a coughing nurse who was setting me up for YAG eye surgery. My first symptoms were very mild; fever, runny nose & fatigue. I took the renal dose of Paxlovid and stopped ibrutinib for 5 days. Six days later I tested negative and didn’t have a fever for the next three days. On the 4th day post-Paxlovid I woke up with a bad cough, chest congestion, stuffy nose & fever, and tested a strong positive with much worse symptoms than the first round. Eight days later with no fever or serious cough I tested a very weak positive, then, the very next day, a strong positive with fever and lots of mucus. I’m still testing positive, as I said, 5 weeks after my first Covid symptoms. Fortunately, at my request my oncologist switched my 6 wk IVIG infusions to 4 weeks, and the infusion center allowed me to come in for an infusion despite my positive Covid test results. Since I didn’t make antibodies to vaccination or booster, I attribute my less severe Covid symptoms to the antibodies in the IVIG. I can live with fever and congestion, it’s the social isolation that is taking a toll.
Please post results if you do have a second round of Paxlovid. And sun_flower I hope that you continue to test negative!
Thank you for responding. I am sorry to hear of your experience. Some of the symptoms you have mirror mine but not to the level you have. That may be because I was a couple months removed from the treatment I had for AIHA (heavy dose of predisone) and the type CLL I have. I hope you get better and feel better fast. I will start my second round of Paxlovid tonight and hope for the best. My garden has not seen me in 3 weeks and has gone to seed. I am amazed how much faster weeds grow than vegetables.
I took Paxlovid in June for my first Covid. Was negative after five days. Then three days later got the rebound which is common. It was stronger than my first episode so asked three of my docs if I should do more pax. Two said yes. So I did and all symptoms went away quickly. Those who do Pax are less prone to long covid. I also am on a very long lung cancer remission thus more cautious than most.
I was sent paxlovid when I got covid a couple of months ago and read the ‘blurb’ they send with it / it says you shouldn’t take it if your on …..’……..nibs’ (Calquence and others ……. Acalabrutinib ……. My doctor was surprised but said I was correct ….. I didn’t take the antiviral
It's usual to reduce or stop the BTKi 'brutinib' treatment for the 5 days on Paxlovid. Short breaks from BTKi maintenance treatment, haven't been shown to have an adverse effect on remission time.
Just an FYI. Well, I have found that I won't be taking the second round of Paxlovid. Medicare does not cover a second round and also limits (in terms of coverage) the number of times one can get Paxlovid to a certain number per year. My oncologist thinks that is twice a year, six months apart. The cost without Medicare coverage is $1,700, so, I remain coughing and with Covid. Hopefully, I can wear Covid out soon and get better. Am monitoring carefully my condition to ensure I don't get pneumonia or other respiratory/sinus issues that need immediate care.
I've read Dr. Fauci was prescribed a second round of Paxlovid. Since CLL folk often need extended antibiotic therapy for bacterial infections, it's understandable that there will be some patients a doctor thinks extended anti viral treatment is warranted.
Some experts are recommending it. There's at least one trial looking in to this. Just because the "average" person only needs 5 days, doesn't mean everyone will.
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