Tested Positive for Covid today. On pirtobrutinib - CLL Support

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Tested Positive for Covid today. On pirtobrutinib

ReneeSusan profile image
20 Replies

Just tested positive for covid this morning. Have low grade fever, sore throat, cough, not constant, achey all over. I’m on pirtobrutinib, wrote my specialist.

Anyone had covid recently? First time was 2021, much worse, I had monoclonal antibody at the hospital. I really don’t want to go to ER as I am caregiving for my husband who is almost totally incapacitated.

Home remedies? Anyone tale paxlovid? Reactions?

Thank you

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ReneeSusan profile image
ReneeSusan
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20 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi ReneeSusan,

I hope your doctors have advised to pause your pirtobrutinib during the days you are taking the Paxlovid (nirmatrelvir/ritonavir) .

Since I am just starting pirtobrutinib / Japirka I checked for a drug - drug interaction on WebMD webmd.com/interaction-check... and found this:

SERIOUS

Potential for serious interaction; regular monitoring by your doctor required or alternate medication may be needed.

Nirmatrelvir/Ritonavir + Pirtobrutinib

Nirmatrelvir/Ritonavir will increase the level or effect of Pirtobrutinib by altering drug metabolism.

-

Len

ReneeSusan profile image
ReneeSusan in reply to lankisterguy

Hi Len

Yes my doc wrote and told me to come off pirto. I took morning dose today. Will skip tonight dose and start paxlovid tomorrow. Have to stay off the day after I finish paxlovid also. They also advised I take half dose of amlodipine for High BP that started since taking pirto.

Renee

studebaker profile image
studebaker

I had COVID twice, the first time I was admitted as an inpatient because it affected my heart with no other Complications. Took Paxlovid and tested negative in about 4-5 days.

The second time I had the worst sore throat, fever and aching all over no hospitalizations and took Paxlovid with no problems.

I am not sure if you need to stop Pirtobrutinib for few days, better to ask your doctor.

Good luck

Dana

ReneeSusan profile image
ReneeSusan in reply to studebaker

Thats what I have sore throat, lots of aches, fever some coughing. Last time was worse. Severe diarrhea and a constant cough that lasted 6 months. Had monoclonal antibody at hospital. I start paxlovid tomorrow.

SeymourB profile image
SeymourB

ReneeSusan

I had COVID in May 2022, before I was on Pirto. I had had 4 mRNA shots and Evusheld. I tested antigen positive for 21 days, and got a secondary bacterial sinus infection.

Despite what you may hear in sone press about Paxlovid, the rebound is not a new case, it's the same case continued because the 5 day series is not enough for us. Doctors certainly can, and probably should, write a prescription for a second series. In any case, the latest JN.1 variant does not seem to be as aggressive. It spreads quickly, but symptoms seem to be less due to less binding to ACE2. But we almost never find out which variant we have.

You'll probably have to stop the pirto if you do the Paxlovid. Don't worry about CLL rebound or resistance. Resistance takes years of BTKi treatment, and Pirto resistance is different from previous BTKi resistance. Maybe CLL will rebound a little, but much depends on how long you've been on it.. I recently stopped Pirto for 5 days (and venetoclax for 2), and saw no change in ALC. If anything, my ALC dropped. I get tested every 2 weeks, and actually had a CBC/Diff in hospital while treated for a different, supposedly viral (non COVID/RSV/Flu) infection. I stopped Pirto due to bleeding due to a fissure after a colonoscopy.

I think it's best to coordinate care for COVID with your hemo/onco. The staff at my local hospital was fairly ignorant of CLL and my drugs and secondary hypogammaglobulinemia. Many of them even failed to mask, despite me asking them to. But I made it through OK wearing my own mask, and holding my breath while taking temperature.

Best of luck,

=seymour=

ReneeSusan profile image
ReneeSusan in reply to SeymourB

Yes did that earlier, My specialist rdered paxlovid and explained I needed to come off pirt for 6 days. I was on calquence for 4 years prior to pirto which I started Aug/Sept this year.

Renee

Kbcjones profile image
Kbcjones

Just got over my second bout of Covid. This time I took Paxlovid and recovered in about half the time. It's not pleasant - has a nasty aftertaste - but I am glad I took it. Hope you feel better soon!

Jevotchka profile image
Jevotchka

I had Covid twice last year. First time couldn't get Paxlovid in time . Took over 3 weeks to get over Covid and still have breathlessness. Second time received Paxlovid which was a godsend. Was better within a week. Am on Acala and stopped that whilst on Paxlovid and for a couple of days after. Hope you recover quickly.

Avamarc10 profile image
Avamarc10

First time for me to over Christmas. Coughing and completely wiped out. I took Paxlovid. Terrible taste in mouth and diarrhea. But after 3 days on the mend.

LynnB1947 profile image
LynnB1947 in reply to Avamarc10

I agree with bad taste that lingered (metallic) until I finished the Paxlovid.

mdsp7 profile image
mdsp7 in reply to LynnB1947

For me, the bitter taste came back a few minutes after taking each set of pills, but a glass of water made it better each time.

LynnB1947 profile image
LynnB1947 in reply to mdsp7

Well, I was glad to have the paxlovid to take. We had lost Tom Henry (the CLL pharmacist) earlier that year so I didn't take COVID, lightly. Grateful to still be here.

Lynn

Justasheet1 profile image
Justasheet1 in reply to LynnB1947

And we’re grateful to still have you here Lynn. 🍻

Jeff

clladytime profile image
clladytime

Hope you're doing better. It is difficult being a caregiver for a spouse and having to deal with a chronic disease and your own medical issues as well. I am in the same situation and wonder who is my caregiver and who is looking out for me? Luckily my CLL is under control right now and I do not have to depend on anyone but myself.

Kingfish6 profile image
Kingfish6

Sounds like me 10 days ago. Same symptoms, plus Covid gives me mental fog & no appetite. On ibrutinib. Got Paxlovid 4 days into it due to pharmacy screw up. Still worked. Get it! Also spent a few days in hospital in 1/2021. Monoclonal a month earlier.

Katie-LMHC-Artist profile image
Katie-LMHC-Artist

I just read all the replies and wish you a speedy recovery. My sister was suppose to meet me yesterday to go eat in an igloo. There is a restaurant near by that offers dinning in igloos. I won’t eat inside restaurants. I felt the igloo would be safe. My sisters grown son moved back home and has been sick. She said he had the flu. I encouraged her to ask him to test for Covid. He tested positive. My sister now has a few symptoms. We canceled. I’m grateful he tested. All I could think about is being in this small igloo, no mask, with my sister who probably will test positive for Covid. Honestly I’m grateful that I wasn’t exposed. Every morning I bring a meal to an elderly neighbor who relies on me. I’m glad that I can continue to care for my neighbor. I’m sorry that you have your hands full with caring for a loved one while now dealing with Covid. Again, I wish you a speedy recovery. You’re in my prayers. Take care! 🙏

ReneeSusan profile image
ReneeSusan

I have been off pirtobrutinib 2 days, started paxlovid yesterday and I woke up this morning with drenching night sweats. Is it covid or CLL related? Did this happen to anyone?

Katie-LMHC-Artist profile image
Katie-LMHC-Artist in reply to ReneeSusan

It could be both. I’m on Acalabrutinib and occasionally have night sweats. Feel better!!!💜

laurieq profile image
laurieq

I would venture to guess that it is all Covid-related. Being off the Pirtobrutinib for 2 days should not cause the sweats. Do you have fever? Prayers for you to feel better today.

ReneeSusan profile image
ReneeSusan in reply to laurieq

Yes started fever 3 days ago, but night sweat started after coming off pirto. I guess just coincidence, but I had to changes my pjs cause I was soaked. Never had that with a fever before.

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