I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was mild but I did experience the rebound effect. I am fine now but curious about how best to handle Covid in the future. I did have to pause Ibrutinib while I took Paxlovid and then again for 12 days because I experienced the rebound effect. Did those of you who received monoclonal antibody infusions at a hospital or clinic also have to pause Ibrutinib? I would prefer to find a Covid treatment that does not require pausing CLL medication although I do understand that Ibrutinib can interfere with healing and must be paused before and after surgery and other symptomatic viral and more serious bacterial illnesses. Thanks for any share experiences and help on this.
Monoclonal antibodies vs. Paxlovid: I recently... - CLL Support
Monoclonal antibodies vs. Paxlovid
I am curious about the interference of BTKi's with bacterial and viral issues. The only thing I ever was told is that it couldn't be taken for surgeries because of its bleeding issues. I sure would like to know more about this issue too.
AVD92449 and Lindalou,
AVD92449, congratulations on this, your first post, which raises a very important topic.
With respect to the "interference of BTKi's with bacterial and viral issues" or as AVD92449 asked, "Did those of you who received monoclonal antibody infusions at a hospital or clinic also have to pause Ibrutinib?", it's important to appreciate that we are talking about different mechanisms here:-
1) Interactions between drugs, other drugs and herbs, foods etc, For example ibrutinib and grapefruit
2) Drugs blocking a biological process. e.g. ibrutinib destroying new lymphocytes, so there aren't any around to learn how to recognise new illnesses and mature into plasma cells that churn out antibodies and memory B cells to guard against future infections
Per Drug-Drug Interactions Between Ritonavir-Boosted Nirmatrelvir (Paxlovid) and Concomitant Medications (with my emphasis)
covid19treatmentguidelines....
"Ritonavir, a strong cytochrome P450 (CYP) 3A4 inhibitor and a P-glycoprotein inhibitor, is coadministered with nirmatrelvir to increase the blood concentration of nirmatrelvir, thereby making it effective against SARS-CoV-2. Ritonavir may also increase blood concentrations of certain concomitant medications. Because ritonavir-boosted nirmatrelvir (Paxlovid) is the only highly effective oral antiviral for the treatment of COVID-19, drug interactions that can be safely managed should not preclude the use of this medication."
This is why those on ibrutinib need to stop taking it while taking Paxlovid - because not doing so could result in an increase of ibrutinib adverse events due to the Ritonavir in Paxlovid increasing the blood concentration of ibrutinib, by inhibiting cytochrome P450 (CYP) 3A4, just like grapefruit and Seville oranges do.
All approved CLL drugs target B lymphocytes, primarily in that part of their lifecycle when they are maturing. Unfortunately all approved CLL drugs can't tell the difference between a cancerous B cell (CLL) and a healthy B cell, although because CLL cells can over-express the drug target (BCL-2 for venetoclax and BTK for ibrutinib), CLL cells are more likely to succumb to the drug than healthy B cells. That's why when we are in treatment, we are unlikely to produce antibodies from vaccinations, although we may have a T cell response. Having a drug holiday for say 3 to 4 weeks, can provide enough time for new lymphocytes to respond to a vaccination and mature into memory B cells and plasma cells, but that long a break in treatment can be risky. The mature forms of the B lymphocyte are less vulnerable to treatment drugs. The plasma cells make antibodies/immunoglobulins and the memory B cells hand around in our bodies, on the lookout for another infection. They quickly switch into plasma cells, producing antibodies that can hopefully neutralise the invading virus, bacteria or other pathogen. We might feel a bit off for a day, say, perhaps run a temperature, then next day feel back to normal, not realising that we have fought off another COVID-19 infection.
Neil
Neil, “if CLL cells are more likely to succumb to treatment than healthy B cells”doesn’t that imply that there healthy B cells left (fewer than normal) that can make plasma cells that can make antibodies?
Yes, that was my point. That's why some who are under treatment with BTKi drugs do produce antibodies.
Thanks Neil, that is what I thought I knew. For me the wording made that point less than clear. I’ll be getting the BiValent booster while on Acal this upcoming week. I put off my next EVUSHELD for two weeks in hopes I can make a few antibodies in the interim.Ron
I was told to stop Zanubrutinib for the five days of Paxlovid and I felt actually great! BP was normal for the first time since starting Zanubrutinib two months ago. I restarted the Zanubrutinib at half dose after the five days and now have "rebounded"'Covid starting this morning with excessively high BP. Should I then stop the Zanubrutinib again until normal test result ? I've heard you can test positive for up to 90 days after initial Covid. As a holiday weekend I have not been able to garner a response yet from my doctor who is "out of town"
The reason for stopping treatment drugs or reducing their dose, is because Paxlovid contains "Ritonavir, a strong cytochrome P450 (CYP) 3A4 inhibitor and a P-glycoprotein inhibitor". covid19treatmentguidelines.... This slows the removal of drugs that rely on the CYP3A4 enzyme to clear them from your body, such as zanubrutinib. Consequently you are at more risk of adverse events, such as high blood pressure, unless you stop taking them, or reduce the dose while you are taking Paxlovid. It's only while you are taking Paxlovid that you need to modify how/whether you take other drugs that are impacted.
Neil
Thanks Neil
I had covid whilst on Holiday in the UK from Australia. Within 24 hours I was in hospital with an infusion of Sotrovimab (free on the wonderful NHS). Almost immediately afterwards I felt my symptoms stabilising and, in a week, I was better. I contacted my haematologist in Australia after about a week who told me it is advisable to pause Ibrutinib, but given I had recovered quickly, there was no need now. On returning to Australia my regular blood test showed the same as ever with no change, if anything a slight improvement.
I was diagnosed in 2008 but still in watch and wait and never had treatment. I caught COVID a few weeks ago and managed to get Paxlovid 2 days after testing positive and showing symptoms. I think Paxlovid made COVID mild for me and by the 5th day I was barely testing positive and a few days later was OK
Great post but I have a question please. Someone just diagnosed with CLL and I’ve been told to “watch and wait”, May I ask how you dealt with the past 14+ years since your diagnosis? Did you make any great lifestyle changes, and does it get any easier day to day in terms of mentally thinking about the fact that you have a chronic and potentially fatal disease in your body like I do now? Desperate for any insight and advice. Thank you in advance!
What would you think, if you were told you had diabetes? That too is chronic and potentially fatal to get. Complications of diabetes can kill one. It's really hard to not react strongly to the words "cancer" and "leukemia" IMO because they have *in the past* been strongly associated with fast moving events and greatly shortened lifespan. Some cancers and leukemias are indeed associated with fast moving events and greatly shortened lifespan, but this isn't one of them. If you had gotten a diabetes diagnosis, you would need to do certain exercise and dietary changes, with or without medication, for optimum outcomes. Same with CLL. But with CLL, we also know our immune system is impaired, so we need to be mindful of things affecting immunity as well as infectious agents.
So I take pictures of skin problems on my phone, and watch these changes to make sure they go away and not continue on or get worse. And I go see a doc sooner rather than later if I think I have any kind of an infection. I plan on it taking longer to "get over" a cold. I wear a mask/eye protection during flu season, now year 'round because of Covid. I try to eat healthy, and get exercise daily.
Mentally, it is possible to accept your have a chronic disease as opposed to an urgently life threatening one. The amount of time to get to this state will vary from person to person. When I was diagnosed in 2011, I was told that I had about a 50% chance of dying within 3 years due to my markers/test results, and the currently available data backed this up. This was the early days of the more targeted treatments, with not a lot of data indicating someone with my markers would respond to treatment other than a bone marrow transplant. I did a clinical trial of a new drug, and it worked somewhat. That sort of calmed me down. I knew this drug class was new and there were new agents coming out, and as a former oncology pharmacist I also knew that whatever the previous "studies" were showing about people with my "bad markers", these newer drugs would change all that. Even though *this* drug didn't work well on me, there were now different options available and more being developed. So in my case, it took mmmm 6-8 months before the fear that I was going to die very soon, got under control. But some do continue to struggle with their fears post diagnosis.
I manage a lot of my anxiety by controlling the things I can. Monitoring my skin, planning my diet, planning exercise, etc. help me personally. Observing nature more, just sitting around watching bees and birds and whatnot. Planting things to bring these creatures into my yard, so I don't have to travel to a park to enjoy them.
I have such great admiration for all of you folks who were the pioneers for the current meds available to us now! How brave to be in trials for drugs that were so new in the field of blood cancers. And look at you! Look at us!! Survivors and living almost normal lives. Where would we be without you !! ❤️❤️❤️😁
As time lapsed after my initial diagnosis, I became more accepting and less anxious about living with CLL. My anxiety would spike close to the time of each visit to my oncologist which during the “watch and wait” period went from every three to four months to every six months. But I lived and enjoyed my life fully. I continue to try to do this despite the challenges of Covid and now being in treatment for CLL. I wish you well and hope you find a way forward that works for you.
RE COVID treatment options- Because I am one of those on Ibrutinib, and in discussion with my GP about what drug might be needed should I test COVID +, I was interested in the phrase AussieNeil quoted "Because ritonavir-boosted nirmatrelvir (Paxlovid) is the only highly effective oral antiviral for the treatment of COVID-19, drug interactions that can be safely managed should not preclude the use of this medication" My GP and I have decided that oral Lagevrio (Molnupiravir) is our likely choice - seems to have less interaction with BTK inhibitors needing to be paused, as far as we can determine.
(PS Molnu derived from Mjōlnir , Thor's hammer apparently -drug tested on ferrets effectively) 😊
Ferrets are vulnerable to respiratory infection in a similar way to humans and can transmit colds/flu/covid to their keepers or be infected by an affected person handling them. Interesting to see drugs are tested on them.
You folks have some great GPs, that is for sure. My GP tells me she never gets my messages (like the 3 times I called with major blood pressure issues recently!!) and my other GP charges an office visit for any phone call that is made and made me wait 3 hours in a room when they "fit me in" to their schedule!!! I'm at a loss, with no place to go and no one to talk to!!
IDK where you are (Long Island?) but have you considered joining a boutique or concierge medical practice group like MDVIP? This once charges mmm about $100 month more (done quarterly, or yearly) and the docs limit the number of patients in their practice so getting in/returning calls happens much faster. They take insurances, it's not like you have to 100% pay for everything. I did this and am very happy with it. Part of MDVIP's yearly fee includes a yearly wellness plan set of visits, which is *not* charged to insurance. That's how I get my blood sent to Cleveland Heart Lab for intensive cholesterol analysis and cardiac risk assessment. I did a search and there are 3 docs on Long Island taking new patients. You might consider trying it for 6 months or so. I pay quarterly. Verify first that any doc does take your insurance. Even if it's the other end of the island, getting folks who return you calls *that day* no extra charge, may be beneficial for you over the occasional having to travel further for an office visit. Not sure how busy those practices are, but I can get seen by mine within 24 hours in an emergency, M-F.
As an example of how this helped in a tough time, when my bloodwork went haywire post CG-806 withdrawal, the local hem-onc who called telling me my bloodwork showed Blast Cells, first wanted me to come to the hospital to get admissted and start chemo urgently. I demurred and wanted a second opinion, and got an emergency appointment for the following week for that Health Care System's CLL specialist in another city. Due to an odd insurance snafu, the day I was to be seen, I was informed the same CLL specialist, whom I had seen in March, was no longer covered in December, and the visit and fees would be out of network. No way was I going to do that! The local hem-onc recommended I drive 90 miles to that city, go in through the ER, and get seen/admitted that way, since Emergency admissions would be covered. I didn't want to do that. I called the CLL specialist I had been doing the study with, he was out for Christmas and the next available appointment was first week in January. (Of course this happened the week before Christmas holidays). I called my primary care doc in the MDVIP network, explained the problem, and requested a CBC with differential done through *their* lab since the point of the cancelled CLL specialist visit was to repeat labwork, to verify. He said sure, he made the order to his lab, I went directly into the lab in their building and got it done. No office visit or office charges.
P.S. This turned out to be a pseudo-Richters type thing. The local hem-onc sent the slides or images to the out of city specialists, and they finally decided that it wasn't RT or any urgent process and the report saying "blast cells"was amended. Meanwhile, I had gotten repeat bloodwork, which was more along the lines I was expecting (High ALC, slightly anemic). No blast cells, nothing unexpected. So always, always verify/get a second opinion if labwork comes back screwy. The specialist I now use, (the study doc) has commented that some of his patients have overly large lymphocytes instead of a smaller presentation.
I believe out here it's over $4000/year and I'm sure all spots have already been taken with city people already. I also can't afford that. The closest hospital I would trust is an hour and a half away. We are really on the Eastern tip of Long Island and cost of living is so high most doctors can't afford to live out here. As it is my CLL specialist is in Manhattan 100 miles away and a 10-13 hr round trip by bus!!! If you would could you pm me the doctors names that you saw and where they are located ? That would be great ! Thanks. I've got excellent insurance for the next two years for free through my husband... then who knows??
Thanks for sharing your plan.
Hello I had Covid in December 2021. I’m on ibrutinib and was sent to the hospital for Sotrovimab infusion, and was not told by my specialist to stop ibrutinib. I got through Covid fine with minor symptoms. At the time in the US paxlovid was not readily available. My Dr told me that patients that were not treated with antibodies that were on ibrutunib had later complications from Covid.
AVD92449 -
No need to stop BTKi during rebound. BTKi is stopped or dosage reduced only while taking Paxlovid to avoid unexpectedly higher dose and side effects of BTKi or less effective dose of Paxlovid. I wish oncologists would understand this better. Dosage reduction is hard to do with most BTKis - usually a different pill must be prescribed. Most hemo/oncos cannot respond in a short time.
Bebtelovimab seems to be about as effective as Paxlovid, at least in the test tube. Unfortunately there's no way to reliably compare in vivo at this point, because of so many differences in CLL treatment previous vaccines, past infections, and changes in drug effectiveness with each variant.
Remdesivir (Veklury) is still effective based on test tube evidence, but requires 3 outpatient infusions.
Molnupiravir is just not very effective, so it's a last resort.
=seymour=
Because I had symptoms during rebound, I was advised by my oncologist to pause Ibrutinib again until the symptoms became milder. I had no fever during rebound but developed a persistent cough. This was soon after Dr. Fauci took a second round of Paxlovid after rebound and described his rebound symptoms as more serious than his initial diagnosis. A few weeks later when President Biden and Mrs. Biden experienced rebound, they were not prescribed a second round of Paxlovid. The President had mild symptoms but it was reported that the First Lady was asymptomatic during rebound. While all over 70, I am unaware that any of these individuals have CLL. I contacted Pfizer and completed two questionnaires on my experience in the hopes that research will be done on dosage and treatment with Paxlovid for those of us who are immunocompromised and pausing essential medications during treatment. I am hopeful that there will be clarification soon. Still, I feel so fortunate that we have options now.
Thankfully I have managed to avoid Covid so far 🤞 but when I discussed the ‘what if’ with my consultant he didn’t want me to stop Ibrutinib if I was offered Paxlovid, but to reduce dose to 140mg. I do have bad numbers TP53. Which may have added to that suggestion.
Colette
Are Oncologists recommending withholding Ibrutinib for the New updated Covid shot?Had to withhold Ibrutinib for the Paxlovid pills; seven days. ? = New Covid/Omicron vaccine?
From what I have read, stopping BTKi during covid infection is individualized. Some experts say, should be easier to deal with covid infection and viral clearance off of BTKi. Of course, this is individualized to a person’s CLL status.
I was diagnosed with Covid in July 21, got bebtelovimab on July 22nd and stopped zanubrutinib. Was pretty miserable with secondary covid sinus infection for about a month. Still testing positive on rapid test, have not restarted zanubrutinib. Was on BTKi for 2 1/2 years before pausing in July, q13 muted
If it happens again, maybe paxlovid would be the way to go. Hoping to clear the virus soon, test are getting lighter, and to restart zanubrutinib.
I know many would say could have restarted zanubrutinib a while back. But while I am positive with normal CBCs, my oncologist and Infectious Disease Doctor wanted to wait.
Thanks for this info !
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