Covid - Paxlovid and Ibrutinib : I tested... - CLL Support

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Covid - Paxlovid and Ibrutinib

210savannah profile image
49 Replies

I tested positive for CoVid yesterday. My oncologist told me to treat symptoms and contact family doctor Family doctor prescribed Paxlovid which is an anti-viral by Phizer. I took 3 doses and was feeling better. BUT something prompted me to call my specialty pharmacy and ask about drug interactions. So there is a category X drug interaction between the Paxlovid and Ibrutinib. I called my oncologist and he said do not take the Paxlovid anymore. Going in for an infusion this afternoon.

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210savannah
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49 Replies
Panz profile image
Panz

This is indeed very interesting…I shall be asking about Calquence when I order this time.

Thanks for sharing!

Panz 🙏🙂💕☘️

JLJC profile image
JLJC in reply to Panz

I consulted my Primary Dr and Oncologist before I took a trip about procedure in the event I got Covid. Both my Drs said I would need to stop Calquence or adjust dosage while taking Paxlovid. 💪🏻🍀🌸

KMac1969 profile image
KMac1969 in reply to JLJC

Same thing my specialist told me at MD Anderson. 10 day pause.

Tapps profile image
Tapps in reply to KMac1969

That’s what my Oncologist told me. Actually 7 days.

Panz profile image
Panz in reply to JLJC

I just ordered my Calquence and asked the pharmacist about it and he said about what you had presented. Each patient is different and depends on many things but generally speaking most doctors are treating it much like any surgery. The same with statins.

May we not need to address that anytime soon!

Panz 🙏💕☘️🙂

annmcgowan profile image
annmcgowan

Thank you for the warning.Ann

AussieNeil profile image
AussieNeilAdministrator

Per drugs.com/pro/paxlovid.html

"Avoid use of neratinib, venetoclax or ibrutinib" .

Please appreciate that this recommendation can be managed in two ways by your medical team, depending on your specific circumstances, i.e., whether COVID-19 or CLL is currently posing the greatest risk to your health. If it's your COVID-19 infection, then pausing your ibrutinib for the 5 days you are on Paxlovid (as is done for surgical procedures) should be seen as the appropriate choice.

What infusion are you having?

Neil

210savannah profile image
210savannah in reply to AussieNeil

MAB IV infusion

210savannah profile image
210savannah in reply to AussieNeil

I thought my oncologist might suggest holding the Ibrutinib but he did not. He said stop the Paxlovid and sent me for infusion.

AussieNeil profile image
AussieNeilAdministrator in reply to 210savannah

That's good to know that your doctor has opted for a way to both maintain your CLL treatment while also treating your COVID-19 infection.

mrsjsmith profile image
mrsjsmith in reply to AussieNeil

Neil,

I had this ‘what if’ conversation with my consultant recently about Paxlovid and he wasn’t keen for me stop Ibrutinib because of my bad markers but suggested reducing dose to 140mg. I just hope I don’t need to test this theory 🤞

Colette

ClassyLady3 profile image
ClassyLady3 in reply to AussieNeil

Would the hold on ALL bTK inhibitors?

AussieNeil profile image
AussieNeilAdministrator in reply to ClassyLady3

Yes, they all affect platelet function, because platelets also have BTK.

Claybuster profile image
Claybuster

If you have Omicron, get bebetelovimab mono clonal. It is allegedly the only monoclonal antibody that works for this variant. Of course, in reading today about omicron it seems that many think NOTHING is working against Omicron Variant 4 and 5! Who knows! Best of Luck

1935husband profile image
1935husband in reply to Claybuster

That is the best treatment that works. It did for me

bmcbass profile image
bmcbass

My oncologist said the opposite. Stop irutinib while on plax. One thing about plax is there is a 20 per cent of covid returning. I had no symptoms but tested positive after a negative test 2 weeks before. No plax required the 2nd time.

210savannah profile image
210savannah in reply to bmcbass

I thought that might be what my oncologist might say but he arranged for an infusion and I received it yesterday. The doctor who prescribed the Paxlovid did warn of “rebound CoVid” on the pax.

Davidcara profile image
Davidcara

My preference should it be warranted, stop Zanubrutinib ( I have stable disease ) start paxlovid. Second choice continue Zanubrutinib start remdesivir over three days, third choice bebetelovimab.

This is far from my only source of information, but if anyone is interested.

youtu.be/Riqf4HddVr4

CaptRon1976 profile image
CaptRon1976 in reply to Davidcara

Good video, thanks

goldstream profile image
goldstream

I started the 5-day Paxlovid treatment Monday this week. I was informed by my oncologist to stop my Ibrutinib for 8 days, which I am doing. The rationale for the 8 days is that while the treatment is for 5 days the effect of the Paxlovid in your body is for 8 days. I have had rough 3 days, but am now recovering nicely. I have to believe Paxlovid was the difference given my immune-compromised condition. Would be interested to hear from others

Phyllis731 profile image
Phyllis731

I too was positive for CoVid this week. Flu-like symptoms, complete exhaustion, cough, and breathing difficulty. Urgent Care doc ordered me albuturol inhaler for help with breathing. I will be having 3 days of infusion treatment starting today with Remvectivere. RN said this treatment is 88% effective and FDA approved as opposed to home antiviral pills that are only 44% effective. Anyone else had Remvectivere? not sure of sp.

AussieNeil profile image
AussieNeilAdministrator in reply to Phyllis731

DoNorth had Remdesivir healthunlocked.com/cllsuppo...

I hope your symptoms are few & wish you a speedy recovery!Cookie

DoNorth profile image
DoNorth

The problem is that the washout period for Ibrutinib or Venetovlax takes a few days and Paxlovid should be started as quickly as possible. I was in this situation and took 3 days of Remdesivir infusions with no issues and never stopped my Venetoclax or Ibrutinib

Mtk1 profile image
Mtk1

I tested positive on Saturday, started paxlovid on Sunday, had phone call Monday told to not stop acalabrutinib by haematologist, he said we need to get on top of my cancer so take as normal, I was reluctant and questioned him as to why but he was insistent and said there was no evidence of interaction and he was advising all his patients to carry on with treatment . I understand this is all new and we are learning as we go, but we need some consistency here. Dave.

AussieNeil profile image
AussieNeilAdministrator in reply to Mtk1

It's quite clear that there is potential for drug interactions, per the FDA authorisation information, with drugs.com specifically noting ibrutinib (so that recommendation would extend to other BTKi drugs) and venetoclax healthunlocked.com/cllsuppo...

Perhaps your haematologist hasn't observed any concerning interactions, but don't hesitate to get back to him if you experience worsening side effects from your CLL treatment drugs.

Neil

Mtk1 profile image
Mtk1 in reply to AussieNeil

Thanks Neil, I also researched interactions and seen that it should be avoided, but my haematologist was adamant that I continue as normal, thankfully so far I’ve been ok, finished paxlovid yesterday so 🤞 it will be ok. Dave.

Fant1924 profile image
Fant1924 in reply to Mtk1

So the reason to discontinue BTKs and Venetoclax is about how you feel and not that one makes the other ineffective? Hopefully I asked that so that you can understand what I mean. In other words if one does not cancel out the other it’s about your physical condition.

Thanks,

Dennis, 75, Venetoclax

210savannah profile image
210savannah in reply to Fant1924

According to the specialty pharmacy where I get Ibrutinib, the Paxlovid causes an increase serum concentration of Ibrutinib I’m assuming that is the danger. See the screenshot photo I posted.

Mtk1 profile image
Mtk1 in reply to 210savannah

Thank you, yes I seen the screenshot, the word potential I think is what my consultant explained to me when I asked he said nothing proven yet, and to carry on as normal, who would you listen to? Thanks Dave.

Mtk1 profile image
Mtk1 in reply to Fant1924

No the simple reason was my haematologist told me not to stop, do I take notice of him as he’s the expert here? Yes, thank you Dave

Awksom profile image
Awksom

You should be aware that you also need to stop taking statins if you are on Paxlovid. At least, that was in my case.

Mtk1 profile image
Mtk1 in reply to Awksom

Yes I had to stop my statins and also change my anti platelet medication.

Tapps profile image
Tapps in reply to Awksom

Yes, Oncologists said stop statins!

210savannah profile image
210savannah

From my google research

Screenshot
Friverapt profile image
Friverapt

BIU@😊

Friverapt profile image
Friverapt

You might want check out latest video on by Vinay Prasad MD at UCSF Med Center. He is also an epidemiologist.

AussieNeil profile image
AussieNeilAdministrator in reply to Friverapt

Dr" Vinayak K. Prasad is an American hematologist-oncologist and health researcher. He is an associate professor of Epidemiology and Biostatistics at the University of California, San Francisco", but he is not an epidemiologist. I think it's worth sharing this extract from Wikipedia about Dr Prasad, as he has expressed some controversial views with respect to measures taken during the pandemic that have protected immune compromised folk:-

"In January 2022, the conservative periodical City Journal published an opinion piece by Prasad in which he criticized several statements made by American public health organizations that he described as inaccurate.[27] Writing for Science-Based Medicine, epidemiologist Lynn Shaffer criticized Prasad's article for the various "mistruths" it contained about face masks as a COVID-19 mitigation measure. In Shaffer's view, Prasad's writing "lean[s] heavily on pushing people's emotional hot buttons" and amounted to a form of fearmongering.[28]

Prasad was an early member of the Urgency of Normal, a group that in 2022 campaigned against quarantines and mask mandates in schools during the COVID-19 pandemic.[29] Prasad spoke in support of repealing such mandates in a March 2022 interview.[30]"

en.m.wikipedia.org/wiki/Vin...

sciencebasedmedicine.org/vi... by Lynn Shaffer, who is an epidemiologist

lynnshafferresearchandwriti...

Neil

Friverapt profile image
Friverapt in reply to AussieNeil

Sorry but he is not a fear mongerer. He is a self avowed progressive on the left who analyzes evidence in Hemotological and Covid studies and calls a spade a spade. Instead of quoting someone else you might take the honest approach and listen to his analysis yourself. He is spot on and many in the medical community, including epidemiologists from Stanford, Harvard and Oxford agree with his analyses.

Apart from N95's, masks do not work. The lockdowns and closures of schools have been far more damaging to children, the economy and anyone under 65 with multiple co-morbities than the infection itself .

I have CLL and choose to follow real science and not live in fear.

KMac1969 profile image
KMac1969 in reply to Friverapt

Well, some of that may be, but it is an OPINION, not a fact. Take mask for instance.. A little real world scenario for you. My wife is a teacher and has been for almost 30 years. She teaches first grade. Every year, the colds and flu ravage their school and her classroom. This was the norm for years, until they mandated masks for ALL teacher and students. In her classroom, not a single person got the flu, a cold, very little allergy issues, etc.. For a solid year. Throughout the entire system, record LOWS for absences due to Flu/Cold, etc.. were recorded.

What did they do? They separated/distanced the children's desk. They stressed hand hygiene. They installed filtration systems and sanitizing light systems in the ductwork. And, they masked.

Once the masks were not required anymore, the sickness returned. Just like clockwork. I, too, have CLL, with a horrendous immune system. My wife wears an N95 everyday of her life, just to keep me safe. So, to say masks don't work, that just doesn't play out in the real world. Especially when you are dealing with a respiratory virus that is spread with droplets.

I'll put it like this, if I hung a cheap Walmart sheet between you and I, and I tried to squirt you with a water hose, it's gonna stop the vast majority of that spray. If I layer that 2 or 3 times, it will stop more. You should not get wet. Maybe a little spray, but not wet. However, take good sheets, layer them, and it is even more protection.

A virus doesn't fly, walk, crawl or jump. It doesn't have wings, feet, legs or arms. It must "hang" on to something and travel from person to person. Anything you use to mitigate that "movement" is reducing the possibility of spread.

Is it foolproof? No.. Is it 100%? No.. But, it is much better thank nothing. So, saying mask "don't work" is not only wrong, it's dangerous misinformation. I have worn many different types of masking in my career, for 30 of 33 years.. Supplied air.. Positive pressure. N95, full-face, half-face, and so on.. They kept me protected. And worn properly, they will protect you.

AussieNeil profile image
AussieNeilAdministrator in reply to KMac1969

Thanks KMac1969,

Friverapt , Masks don't work only for those who seek out confirmation for their bias. In Australia, the exponential growth of COVID-19 in a population of 6.5 million was reversed by introducing a mask mandate, which included cloth masks, surgical masks very few N95 masks and many poorly fitted masks. See healthunlocked.com/cllsuppo...

Our nation has had neglible flu seasons the last two years, but this year, with masking in shared community settings abandoned, we are having our worst flu season in ages. See plot attached. Our hospitals are now under extreme stress from flu and COVID-19 cases. We lost around 1,300 to COVID-19 before we had vaccines, through the use of mandates that Dr Prasad takes issue with, and have lost 9,000 more as we went back to living as if an ever more contagious pandemic no longer exists.

Approximately 25% of the 1 million plus deaths from COVID-19 in the USA were under 65 years of age.

statista.com/statistics/119...

If the USA had followed a similar path to Australia and New Zealand, you'd have around 800,000 people still alive.

I can't match KMac1969's impressive anecdotal experiences, but I've lived a decade with severe chronic neutropenia and it's times when I wasn't wearing a mask in public that I ended up in hospital with febrile neutropenia or picked up other infections.

Neil

Flu cases in Australia over last few years
Justasheet1 profile image
Justasheet1 in reply to KMac1969

Kyle,

Friverapt did not say all masks don’t work.

I quote, “Apart from N95's, masks do not work.”

I’m just pointing that out.

A properly fitted and worn mask provides protection. Only FFP2, KN95 and N95 masks can do that by sealing the gaps around the face. Due to high viral load of Omicron, the rest of the masks don’t do a good enough job so @Friverapt is not completely wrong.

Jeff

CLLerinOz profile image
CLLerinOzAdministratorVolunteer in reply to Justasheet1

Perhaps, a more accurate way to look at it would be to say all masks work to some extent, some masks work better than others and N95/N99 masks work best of all.

"The messaging around masks is very disjointed – many commentators are adding to this confusion by offering their own views which fly in the face of the evidence. Everyone needs to get the message that ‘Masks work’ and are a part of the solution to ending this pandemic.

PROF LISA JACKSON PULVER PROFESSOR PUBLIC HEALTH, DEPUTY VICE CHANCELLOR INDIGENOUS STRATEGY AND SERVICES, UNIVERSITY OF SYDNEY. "

ozsage.org/?s=mask

Justasheet1 profile image
Justasheet1 in reply to CLLerinOz

Oz,

From your post a few days ago:

“Omicron changes the game

An analysis of fine aerosol emissions found that, compared to the original wild type (WT) virus:

“Delta and Omicron both also have increased transmissibility: the number of cells infected for a given number of ribonucleic acid (RNA) virus copies was found to be doubled and quadrupled respectively. Furthermore, Omicron also seems to be better at evading the immune system. This implies that the critical dose of virus copies above which a situation is potentially infectious needs to be lowered. For the WT, we had proposed a critical dose of 500 virus copies. If the above-mentioned capacity to infect cells translates into an infection risk, this would imply a critical dose of around 300 virus copies for Delta and around 100 virus copies for Omicron.”

The study finds that “surgical masks are no longer sufficient in most public settings, while correctly fitted FFP2 respirators still provide sufficient protection, except in high aerosol producing situations such as singing or shouting.”

Jeff

CLLerinOz profile image
CLLerinOzAdministratorVolunteer in reply to Justasheet1

I don't disagree with that at all. However, in a world where not everyone has access to an N95 mask, it's also important to acknowledge that a well-fitted surgical or even cloth mask is better than nothing at all.

Justasheet1 profile image
Justasheet1 in reply to CLLerinOz

Oz,

And Sotrovimab is better than nothing and the FDA took that away from the US doctors.

I guess in that case nothing was better?

Jeff

KMac1969 profile image
KMac1969 in reply to Justasheet1

Yea, I saw that, too. I was pointing out that other mask do, in fact, help.

SofiaDeo profile image
SofiaDeo in reply to Friverapt

I guess if you are more interested in the economy than saving lives/preventing death from an airborne transmitted disease, the lockdowns et al were more damaging.

And just because a university trained & degreed person chooses to disagree with science, and has some followers, doesn't make them right. The world is indeed round, even though "experts" at that time decried the initial science. There was too much evidence to the contrary, although the (at that time) majority that claimed it was flat, eventually had to admit they were wrong......Hopefully the anti-maskers will eventually come around to the science that flies in the face of what they want to believe. Medicine and the statistics behind "facts" aren't the same as aeons ago, they are better, and anyone choosing to distort or refuse the data, is just plain wrong.

SofiaDeo profile image
SofiaDeo

Apologies, I seem to have commented/nested incorrectly (again). My intent was to comment on the original post from Friverapt, not anyone else's. The one regarding university trained and licensed Dr. Prasad's masking opinions, and the fact that he has some university trained, licensed people who also agree with his anti-mask stance. IMO we originally needed the lockdowns, because people were dying when the disease was relatively unknown. When it became evident it was an airborne transmitted disease, stringent application of well established procedures for dealing with airborne transmission (like masks, and goggles, as well as hand washing/sanitizing) would have served us better than "lockdowns" that numerous people violated anyway. If people couldn't mask, *that* subset should have been isolated. Instead of continued lockdowns that people ignored anyway.

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