anyone not take Paxlovid?

[rggerlac]

Covid finally found me - tested positive this morning. Symptoms mild so far and had Bivalent booster is October. Been on acalabrutinib 3 years and doing well. Has anyone chosen not to take Paxlovid, especially with mild symptoms? Worry about rebounding with Paxlovid but will take it if it’s advised. Will talk to doctor tomorrow. Appreciate your thoughts. Just wondering if I can do it on my own.

[rggerlac]

in October, not is. Thank you. Only symptom so far is low grade fever and post nasal drip.

[Davidcara]

I took it 90 days after testing positive because, I was not clearing the virus and was inconsistently testing positive on rapid test. It seemed to help me clear the virus, side effects were minimal. Small amount of loose poop, metallic test in mouth.

[cajunjeff]

I personally plan to take paxlovid should I get Covid, based upon the advice of my doctor. My understanding is the earlier you take paxlovid after contracting Covid, the better.

Many people start with mild Covid symptoms and never progress to serious disease. Those of us with Cll are among a category of patients more at risk of having mild symptoms convert to serious symptoms, and it can happen quite rapidly.

I doubt anyone or any doctor can predict with certainty if you will progress to more serious Covid or not. I personally would not take that gamble and opt for paxlovid if I could get it.

At a minimum, I would consult your Cll doctor asap and seek advice on what meds, if any, to take. It is probably true that this Covid variant is lesss dangerous than prior versions, but the hospitals are filling up again with Covid patients and many people still die from it.

[CycleWonder]

My in-laws, who are in their 70’s, active but do not have CLL, opted to not take Paxlovid when they caught Covid after traveling. They started out with mild symptoms but after a few days, they both suffered with constant coughing. They sounded horrible for three weeks in our weekly Zoom calls.

[jijic]

I didn't take it because I got COVID while on holiday in a country where it wasn't available to me. I don't think it would've been here in Germany either though, because I'm in remission and not considered high risk enough. I was fine!

[MisfitK]

I'm on Watch and Wait and didn't take it this summer. Partly b/c no one wanted to give me a script since it was limited then, I'm young, and my symptoms were SO mild (I had clear nasal run for 3-4 days and a slight fever for about 36 hours) plus fatigue overall for about 5-7 days.

This was my 2nd Covid bout, though, and the 1st (in Feb 2020) was rougher...but there was no treatment then, nor shots. When I got 2nd Covid, I'd had the original Pfizer series and a booster.

I'd probably decide based on my symptoms, my docs' thoughts, my vax status, and my previous Covid bouts status...

PS - I took Umcka cold and flu, Ibuprofen, and elderberry vitamins with zinc, vitamin c, and vitamin d...and I lived on a sick person diet with BRAT and tons of fluids to help. And got tons of sun and outdoor air b/c it was summer...

[Pin57]

I concur with cajunjeff’s reply.

Take Pax (but check w/your doc first)…why risk the wheels coming off the bus? I have a preset agreement with my CLL doc… he said definitely take Paxlovid w/o delay, might save your life.

Good luck n get well!

[Podge63]

Thank you all. Right now (day 2) I'm bordering on asymptomatic. A little nausea and headache, but no fever, cough, etc. I have the paxlovid in the house now. This is probably a question that no one can answer but is there a point at which you know you're past the risk of "the wheels coming off the bus" as Pin57 said? Can the bus break down on day 10? Again, realize not an easy question to answer.

[Podge63 in reply to Podge63]

I should clarify that I'm not concerned about the paxlovid per se, other than the risk of rebound and staying off my Calquence longer than necessary if I don't need to (especially with such mild symptoms so far).

[Mtk1 in reply to Podge63]

I took my calquence with paxlovid, no problem.

Dave.

[Health50 in reply to Podge63]

My recent COVID experience as a first timer was mild the first 6 days. I started on an antiviral on the 2 nd day of symptoms per my Oncologist. I started feeling worse about day 10 and am still feeling poorly one month post illness, to the point of being functional about 3 hours out of 24 at this point. I developed the dreaded dry COVID cough and continue to be extremely fatigued. I so wish that I had not gone maskless as I had been incredibly disciplined about wearing an N95 until that point.

[Pin57 in reply to Podge63]

Suggest Re-read Cajunjeffs reply… he addresses your question about my question “why risk that the wheels might come off the bus?”

My explanation is it’s an analogy that Covid can turn ugly quickly after starting out mildly… aka, a rough running bus suddenly loses its wheels, as I’ve unfortunately known 4 people that died from Covid. It was a similar story each time … started with cold like symptoms, no big deal right?, then somehow it rapidly turned into a hard to breathe situation, an ER trip, then put on a ventilator (that is pure hell btw …witnessed my dad on it for over a month) and then unfortunately death followed.

Point of that unfortunate saga is that I suggest don’t risk being that case. Maybe it’s rare, but maybe not so much for people with CLL….

Here’s an article, yes it’s a year old, that alerted me to the fact we with CLL are much more vulnerable to die if we get Covid then the general healthy public is:

nature.com/articles/s41375-...

The article n studies it quotes is old information during Covid “early times”… but again what sticks out is having CLL as most of us know we simply are more vulnerable to many viruses (eg, Covid, flu, pneumonia, etc) n potentially worse outcomes.

But… it’s great that we now have antivirals to fight Covid!

You have Paxlovid n assume you have discussed with your doc that it’s ok for you to take for your particular medical condition n CLL treatment, etc (we are all unique individuals with unique medical issues so it’s a good idea to discuss Covid situation with your doc n get their advice what to do).

If it were me, and I had my docs blessing to take Paxlovid, Id take it now before Day 10 to help give it its best ability to help you beat Covid.

Why wait till day 10? Yeah you very well “might” be like many you know (and there are some on this forum too that may reply with same story of “just tough it out “… n they did well, which is a good story, don’t get me wrong!) n escaped Covid harms-way by just “toughing it out” w/o taking an antiviral med like Paxlovid. Or…. on the flip side you might unfortunately become another CLLer death stat. 😞

My CLL doc notes most of the above when I ask him “what to do if I get Covid?” (I havnt had it yet)…. and he knows I’m early W&W, luckily have max spike antibodies, etc, … but… he tells ALL his CLL patients, no matter what stage w/CLL they are in to immediately take Paxlovid if they get Covid (with a caveat … unless their situation is unique n they are not to take Paxlovid for specific medical reasons). He ends his advice with a simple “it may save your life”.

It’s your choice. I wish you the best and a great outcome!

[Podge63]

OMG, I just realized that at some point/somehow, I created two different profile names, lol. I am Podge63 and rggerla. I'll see if I can fix that -- sorry for any confusion!

[AussieNeil Administrator in reply to Podge63]

You aren't the first to set up two profiles. Unfortunately HU Support can't combine your profiles, so you'll need to decide which one to use. You've used both about the same:

healthunlocked.com/user/Pod...

healthunlocked.com/user/rgg...

You could put a note in one profile referencing the other. Here's link to modify your bio: healthunlocked.com/profile/...

Neil

[SeymourB]

Rggerlac -

Paxlovid doesn't cause the rebound. It's a COVID rebound due to the fact that 5 days of Paxlovid is too short to clear the virus completely for some people. The average course of the disease is about 10 days. If you wait longer than a few days after 1st symptoms to get Paxlovid, you'll likely have a longer case.

You'd have to hold the Acalabrutinib for at least the 5 day course of Paxlovid due to both drugs using the same metabolic pathway.

People do survive COVID without Paxlovid. Much depends on how well your immune system functions, and whether you tend to develop secondary infection with upper respiratory viruses. Many doctors won't ask for a sinus culture, preferring the mysteries of disease to diagnostic confidence.

=seymour=

[SofiaDeo in reply to SeymourB]

IDK why they aren't routinely giving us immune compromised folk a 10 days course. Dr. Fauci did it when he got Covid. We routinely need extra antibiotic therapy than average, so extra viral therapy is a no-brainer IMO, unless otherwise contraindicated.

[SeymourB in reply to SofiaDeo]

Totally agree! Same is true for antibiotics. I little longer, please!

=seymour=

[rggerlac]

Thanks for your guidance everyone. I ended up starting the Paxlovid this morning. It may be overkill in my particular case with such relatively mild symptoms and a low propensity for infections, but it’s better than the chance of getting seriously sick. No side effects from Paxlovid yet, not even the metallic mouth taste. I’ll keep you all posted. Thank you again for your input. I appreciate it more than you’ll ever know!

[Pin57 in reply to rggerlac]

Great to read you took the Pax n good luck rggerlac forging ahead! 😀

[SheySheySwimmer]

Hi raggerlac. I took my last dose of Paxlovid 7 hours ago. I started on 12/26/2022. Two days before, my voice went hoarse and I had a slight sore throat. The next day, 12/25/2022, l felt absolutely awful. Went to ER Dept, explained to ER Dr. I need a rx for Paxlovid. ER Dr., requested I take a chest xray, results negative for Pneumonia. Was give rx of Pax and sent home. Took 1st dosage of Pax that evening. On 12/26/2022, I felt 75 percent better. Tonight, I feel 100 percent better. Plan to take an at home Antigen Covid test in the morning (Sunday).