Paxlovid
Begs the question. If your doctor told you thi... - CLL Support
Begs the question. If your doctor told you this medication will cause you to get the same disease again, would you take it??
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Friverapt
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Ummm one doesn't "get it again". Paxlovid tamps down the virus, it can't replicate, so one can not have increased severity of symptoms, *as the body mounts an immune response*. Without it symptoms could be worse. To the point of needing hospitalization. The "rebound" is when the disease lingers instead of being stamped out completely, during the 5 days of taking the med. Or at least, stamped down enough to not continue to cause symptoms or test positive on a Covid test, when the medication is removed. Your statement that Paxlovid somehow causes Covid to "come back" after being fully eradicated is incorrect. It never got removed in the first place.
drugs.com/medical-answers/y...
scientificamerican.com/arti...
And normal healthy people are experiencing this "rebound" problem, in the effort to eradicate initial infection:
abcnews.go.com/Health/paxlo...
I tested my husband, who has CLL , and he has tested positive for COVID. We have to wait on day 3 to talk with his Dr because of the holidays. There was a Dr on call back, but he asked to wait for his oncologist to call us due to the treatment my hubby was on. Question- Do you stop the treatment in or to take paxlovid?
Stop it for 5 days is what I read on these pages. Finish Paxlovid, continue the treatment.
I was to stop the statin drug when taking paxlivid.
Update, my hubby's Dr stated to stop all his immunotherapy pills for 5 days while taking paxlovid because paxlovid will interact with his Acalabrutinib and Venetoclax
Is this post meant to be helpful to our Cll community on here? Or is just meant to start one of those circular right vs left Covid/Covid medicine debates?
You may want to research a little before asking that question. Paxlovid does not cause you to be reinfected or "get it again". In immunocompromised patients, especially, the virus is not eradicated in the five day window, so it lingers. Now, as others have mentioned, healthy individuals are having the same issue as well.
Obviously, it is up to each of us individually to make that choice. If you are infected with Covid and don't want to take Paxlovid, by all means, don't.
This question illustrates a serious but common misunderstanding of what "rebound covid" means. Even some doctors don't understand this. I got covid last summer and went to an urgent care clinic to get paxlovid. The doctor did not want to prescribe it to me because she "did not want to give me a drug that would make me sick".
It only took me a few minutes on google to establish that: 1) rebounds occur in only about 2% of patients; 2) the drug does not cause the disease. What happens is that the drug suppresses the virus until you stop taking it. In a small number of cases, the virus can rebound after the patient stops taking Paxlovid. This speaks to the need for a higher dose or a longer period of treatment, not denying treatment altogether.
I was shocked that a doctor, of all people, had such a poor understanding of how medicines work. Fortunately, my case of covid was not serious, otherwise this incompetence could have cost me dearly.
In many cases, people essentially choose to not understand.
it’s probably helpful to understand what efficacy means too
There are actually ongoing clinical trials to determine if increasing the number of treatment days (or increasing the strength) would cut down on the “rebound” cases. As was stated before, it is not that the Paxlovid “caused” the virus to multiply, but it wasn’t a sufficient dose to completely eradicate it.
Terry
My local doctor did not want to prescribe Paxlovid because of the possible rebound effect, & he wrote me a prescription for a different medicine. I contacted my specialist at MDA & got the Paxlovid. Within 2 days of beginning Paxlovid, my 101+F temp was down to low-grade (99F), and I was feeling better. It's been 20 days & no rebound for me. Feeling fine!
I researched the medicine that my PCP prescribed for me, and it was not recommended by CLL specialists for COVID.
If I should get a rebound effect, I will simply contact my CLL specialist & request a refill of Paxlovid. (I did stop my ibrutinib & some other meds while taking Paxlovid)
Lynn B
Hey Lynn: This is Bill from our CLL Zoom group. I hope you are still doing well.
Bill
Bill - I have been on ibrutinib now for almost 9 years. It just keeps on working. I am doing just fine.
LynnB
I completely agree. I always insist on being a full "partner" in managing my own health care. I won't stay with a doctor who won't treat me that way. I also agree that doctors are human and make mistakes. That is why we have to be alert and provide "back-up" within our own health-care partnerships.
AussieNeilPartnerAdministrator
Article just published in Nature: COVID drug Paxlovid was hailed as a game-changer. What happened? nature.com/articles/d41586-...
Snips:-
Researchers say that the drug’s rollout has been hampered by worries about ‘rebound’ (the mysterious return of symptoms or detectable virus days after a person starts to feel better) and side effects — as well as by declining concern about the risk of COVID-19.
Sentiment against the drug has persisted even as regulators globally have rescinded authorizations for monoclonal antibodies against COVID-19, leaving Paxlovid as one of the only tools to prevent death in high-risk individuals, says Davey Smith, an infectious-disease physician at the University of California, San Diego. “It’s a game-changer drug that has good efficacy, even in the setting of Omicron,” says Smith. “But rebound has been tagged as a reason not to take the drug, which is a shame.”
But researchers have found that rebound often occurs even in people who don’t take Paxlovid3. Precise estimates for rebound incidence vary, depending on the population studied and the definition of ‘rebound’. But regardless of whether people take Paxlovid, Smith says, it’s common for them to experience either viral rebound — in which people test positive again — or symptom rebound, but not both at the same time4. Smith says that symptom rebound tends to be very mild, and is still far preferable to hospitalization or death.
The full article is fairly short and well worth reading:
Getting back to your original question about believing your doctor. Many of us, after learning more about CLL and our doctor's understanding of CLL, realise that it's time to find another doctor.
From: sciencebasedmedicine.org/dr...
Dr. Vinay Prasad echoes a common antivax trope that portrays concern about a deadly disease as irrational fear
Quoting Dr Prasad's misinformation;
"Fear of long COVID is irrational. In so far as it exists, you have to accept it. In so far as it is overblown, you can ignore it. There is no good evidence boosters or Paxlovid or anything changes it. That evidence would require a clear consistent and reproducible definition. Good luck with that."
Neil
