Just tested positive for Covid. Is it treated like anyone else who has covid? I called the weekend on call nurse at MD Anderson. She told me to go to urgent care and get paxlovid. She also told me to not take my brukinsa while on it and talk to my doctor Monday. I’ve been taking Tylenol for fevers and decided to see what my fever would be. Spiked to 101.8! So I took Tylenol which brought it down. Sitting here at Urgent care so I could get a script. Any thoughts?
covid: Just tested positive for Covid. Is it... - CLL Support
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Reetywell71
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ivermectin,vitamin C, wild oregano oil, Quercetin, Sovereign silver just as you would a virus. Lots of rest and organic bone broth and teas.
Mauisusan, Reetywell71 has been given excellent advice from a nurse at one of the top CLL research centres in the world, whereas the supplements you have suggested have either been proven not to work, or there is scant evidence of their effectiveness. When we are infected with a potentially fatal illness and have a compromised immune system, that's not the time to try unproven remedies when we have good evidence that a proven antiviral - Paxlovid, saves lives when taken early enough after infection.
See for example:-
271 posts on Paxlovid
healthunlocked.com/cllsuppo...
Results from long awaited Ivermectin for COVID-19 Oxford University (PRINCIPLE) study of 8,800 COVID positive participants. It doesn't help!
healthunlocked.com/cllsuppo...
(There are only 39 posts about ivermectin in our community)
Colloidal silver
mayoclinic.org/healthy-life...
healthunlocked.com/cllsuppo...
Neil
I have had CLL for 7 years and with good nutrition and the items I listed , when I contracted the first COVID virus which was deadly, I never bought into the so called vaccine or drugs. I trusted myself and Hippocrates lessons 💪
Please appreciate that with 30% of us never needing treatment, your experience is possible without taking an alternative approach, which I appreciate is your preference, based on your community replies. Given you have gone 7 years without treatment, you may well fall into that 30% category - something we'd all like to do!
Would you happen to know your CLL prognostic markers? Even your flow cytometry result can provide an important marker. If you are CD38 negative, there's a good chance you are in that 30% group. I was diagnosed with stage 4 CLL/SLL and my flow cytometry result showed I was CD38 negative and my stay in watch and wait was 11 years long.
Good nutrition and other means of keeping your body working most effectively may certainly give you the edge when fighting illnesses, but they can't block viruses from entering our system and they don't kill viruses - we rely on our immune systems to do that.
I note that the phrase "so called vaccine" is used by those who don't consider mRNA vaccines as vaccines, but mRNA is just a different way of showing our immune system B and T cells what to guard against. There are also other traditional COVID-19 vaccines if you don't trust mRNA vaccines.
Hopefully you'll never need drugs to help you live out your normal life expectancy with CLL, but drugs have saved the lives of very many of our community members, including me - several times.
Neil
Cheers Neil !!!
I’m sorry, but suggesting that a forum member with covid take a gaggle of unproven remedies over the medicines recommended by their medical experts at MD Anderson is awful advice.
No disease history, no info about you at all, no age, no gender. I'm all for self help but if I'm to take you seriously, I need more info. Your CBC history, dietary choices and training regimen would be a good start. Because other than random supplements you seem to like, I don't have any info.
I usually don’t read these COVID posts as it seems to be only one opinion matters, but I read this one. Don’t be discouraged, just skip the COVID questions. The rest is pretty good.
Your intention was to help and a few of these things may help like vitamin c and quercetin and I would add L lysine to that but Paxlovid is the only prescription proven to ease the effects of the virus and shorten course. Getting in nutrition through bone broth has been shown to help some but I would not as a pescatarian. I wish you continued good health. I don’t have CLL. It is my husband who does and I can tell you when we got influenza. A it barely bothered me and I was over it in a few days while he ended up in the hospital with pneumonia. And this was with him being clear of any residual disease for almost 3 years. Now we have both been fortunate have escaped ever getting Covid.
Im in the uk and although we are in different countries they will give you the script for Paxlovid which is an antiviral drug to help your body fight Covid off. They will give you advice. I hope you have now been seen. Anne uk
Reety,
Sounds like the on-call nurse gave you good advice; take it along with Tylenol and plenty of fluids.
Feel better.
Jeff
CLLerinOzAdministrator
It's a pity there's not an easier way to access Paxlovid (especially on weekends) but your nurse has given you good advice, as Justasheet1 said.
Do check in with your MDA team tomorrow to discuss your Brukinsa treatment pause and keep in touch with them if your symptoms are persisting as you approach the end of your Paxlovid treatment.
For some people, the five day course doesn't clear the virus sufficiently and they experience a rebound effect. Usually, rebound symptoms are milder but they can linger so don't suffer in silence.
I hope you're feeling a lot better soon.
CLLerinOz
Still deciding whether to take the paklovid. I would love to see my body just fight it off without it. I’ll talk to my doc tomorrow
Thanks
Reety,
Your doc is going to tell you to take it. What if waiting is a poor choice? I wouldn’t chance it but to each their own.
Feel better.
Jeff
Not necessarily. My CLL specialist doesn’t prescribe paxlovid anymore except in certain cases.
I agree with Justasheet1. Your doctor will advise you to take it and, by not taking it, you risk the virus replicating in your system more, making it harder to clear.
CLLerinOz
I think you can fight it off with natural approaches and good nutrients 💪🙏
CLL is a very heterogeneous disease and that also applies to what extent our immunity is compromised. The facts are that before we had effective antivirals, monoclonal antibodies and vaccines, about 30% of those with CLL who were admitted to hospital with COVID-19 died.
There's plenty of good evidence based information on how to minimise our risk of becoming ill with COVD-19 and how to manage a COVID-19 infection on the maintained CLL Society COVID-19 home page cllsociety.org/covid-19-home/
Neil
We all have our journey with any virus 🦠🙏
I believe it should be between the patient/doctor. Although original post asked our thoughts, layperson, by experience or otherwise, not the appropriate chance to take here. Hope you are well.
when did you get your medical qualifications, I wonder. you do realise that CLL is a cancer of an important part of your immune system, don't you?
Been a nurse and health educator over 40 years.
Sorry didn’t realize you weren’t replying to me😏
Reety, I had covid recently and was told by my nurse at MD Anderson to take paxlovid too. I went through the same analysis you are doing. My totally layperson thoughts are that if you do not take paxlovid, you will still most likely do well. Covid is not the threat to us it was.
But it is still a threat and no one can predict who gets long covid or very sick and falls in the small % that does poorly.
I figured for me that if paxlovid increased my chances of not getting seriously ill by only 5%, for instance, it was worth it for me, so I took it. I think I would have been okay without it. But I think I would probably be okay without homeowners insurance, but I still buy it for the protection it provides.
Good luck, I think you’ll be fine either way.
Thank you for that Jeff. Best response. The PA at urgent care told me the same thing. It’s not a threat as it was in the beginning and to relax. My fever broke last night and mostly having sinus congestion. My concern is if I take it I will have to stop my 2 caps of brukinsa. Will that mess me up? I’ve been on a reduced amount of brukinsa since 7/24 and doing very well so far. I’m CD38 negative for whatever that means. Leaning toward taking it but still waiting for my doctor to call. Thank you for your response.
Rita
Hello Rita. I have been on btk drugs for about 7 yrs now and have probably paused them a dozen times or more for things like paxlovid, vaccines and dental work without problems. I check with my doctor first and follow his advice. He must not think the pauses are any big deal.
I would not give that advice universally to all, as I suppose some people might be prone to disease flare-ups even on short pauses. My sense is that for most people on long term btk drugs, pausing for a few days now and then is no big deal.
Your doctor must think its okay for you to pause, otherwise they wouldn't have advised you to. While I think you will be fine either way, evidently your doctor thinks the added protection of paxlovid is worth it. I took paxlovid for both of my covid bouts. Good luck
Just curious why you asked for all of this advice but you decided to hold off on the med? Appreciate you being in medical field. What would you have told a patient of yours in your situation? Seriously curious for your reasoning, not being sarcastic or rude.
I weigh things out. My labs have always been completely normal with a good neutrophil count. I want my body to develop antibodies against Covid by itself but maybe just not understanding the mechanism of paxlovid. My fever broke after 2 days which is a sign my body is fighting. Going into the 3rd day with sinus congestion and a cough with clear sputum. No im not a doctor but I advocate for myself. Been in the medical field for over 40 years. I will most likely take it after consulting with my doctor. I take medicine seriously and it’s side effects.
Feel better!
Rita, while you are taking a BTKi inhibitor, (Brukinsa (zanubrutinib) in your case), you are unlikely to have any new B cells available to mature into COVID-19 antibody producing plasma cells from exposure to the virus. You'd need to be off Brukinsa for long enough for your bone marrow to produce new B cells and then a couple of weeks for them to mature - so at least a 3 week break. So while it's possible to take a planned break from treatment to produce antibodies from a planned vaccination, it's much harder when you are infected, because going off Brukinsa for that long could result in pseudo Richter's Transformation, that is, tumour flare from your CLL no longer being inhibited.
One of the components of Paxlovid, ritonavir blocks the liver enzyme inhibits cytochrome P450-3A4 that would otherwise metabolise the antiviral component of Paxlovid - hence maintaining a higher blood serum concentration of the antiviral component nirmatrelvir, thereby inhibiting the SARS-CoV-2 virus. Many drugs, including the BTKi class of drugs such as Brukinsa, are also reliant on this same liver enzyme for metabolisation. If we don't pause (or at least reduce the dose) of drugs that interact with Paxlovid, you can get higher blood serum concentrations of the interacting drugs, so you are accordingly more likely to experience side effects from the interacting drugs.
Finally, long term monitoring of those on BTKi drugs has determined that there is no difference in progression-free survival between those that have the occasional short term recommended breaks from BTKi therapy, typically for surgery, but in this case for a course of Paxlovid and those that don't take breaks.
Neil
That is why I say we have control of our immune system. I choose to take care of myself by nutrition not pharmaceutical. I am voicing what works for many! Offering suggestions and alternatives. Not everything is a debate!!! And one more suggestion!! Capsol T every 4 hours 😀
Like you, Mauisusan, I try natural cures first. However, in spite of having had much success using natural medicines and diet and lifestyle changes to manage my unmutated "poor prognosis" CLL for 17 years now, I seriously could not get the Covid to back off the first time I had it. So I took Paxlovid. In my view, there is no shame in reaching for a drug that has been developed to help you if your other means of healing yourself fail. I am grateful that I had those Paxlovid pills. They really helped me survive. May you stay well.
It is obviously your choice, but Paxlovid is proven to reduce the chances of Covid affecting the immunocompromised in a serious way. I would do as suggested and take Paxlovid as soon as possible.
I have had COVID and took Paxlovid. Within 1 day, I was already beginning to feel better. If you are prescribed the medication, and the doctor thinks it will benefit you, then please consider taking it. There is no reason to feel bad and possibly feel worse or end up in the hospital if you don't have to. Just my opinion, but I wanted to be up and on my feet feeling better as soon as possible.
I can appreciate your wanting to give your immune system a chance to fight back. I felt the same way when I got Covid for a second time. The first time was pre-CLL diagnosis, so no Paxlovid. My symptoms round two were similar, but I decided to take the Paxlovid to cut my chances of long COVID. Also, I still had mild AIHA, and it was less than a year since my last Rituximab infusion. I did get the rebound, but I do not regret taking the Paxlovid. I have used alternative medicine for about 40 years, and I use supplements prescribed by my naturopath and approved by my CLL specialist. However, I also give thanks for science and use the drugs when needed.
We CLLers are known to be immune compromised because CLL is an immune disease.
Especially with your recent infections once you were diagnosed, I would suggest taking the Plaxlovid as instructed by the RN.
However, if you still feel hesitant, I suggest you talk to your CLL Specialist regarding your immunity. Treatment that works on our CLL does not erase the immune compromise we have. CLL cannot be cured, though there are rare cases of cures or disappearance of CLL. Pneumonia was a diagnostic result for COVID during the pandemic.
Please take care and let us know how you get on with COVID and your decision.
Your nurse gave you great advice. I had Paxlovid in December. I recovered very quickly. I didn't feel very ill to start with but I would never risk it. I had a terrifying experience with Covid before any drugs or vaccines were available and it took me months to recover. If I can try to avoid it, I always will. People like us still die of covid. Trust your doctor, they are here to help us, not to harm us.
I was prescribed the same when I was treatment naive with CLL
One fact I’ve not seen on this thread is Paxlovid is most effective if taken in the first five days following the onset of symptoms. Not diagnosis but onset of symptoms. Please keep this in mind.
Best,
Mark
Hoping you're feeling better. I have had Covid twice now and will recommend Paxlovid to everyone. My first time I could not get the antiviral and was so ill for 3 weeks that I could not get downstairs - I did however stop smoking! The second time I was prescribed Paxlovid and was better by the end of a week but timing is essential - I was told had to be within the first 5 days of contracting Covid. Best wishes.
I came down with Covid a couple of years ago even after having had 3 Covid vaccinations and 2 Evusheld shots. It was basically like a mild cold (fever, chills, fatigue). Like you, I called about Paxlovid, but my MD Anderson doc said NOT to take Paxlovid (even though I was within the window of its protocol). She said to take Tylenol, as well. My son-in-law, who is an Infectious Disease MD, told me the same. I was back to normal in 3–4 days. My thinking is that if you have been vaccinated for Covid, Paxlovid is not indicated.
I use green tea and turmeric and diet to manage my CLL with good results so far, however, when I got Covid, none of my usual anti-cold treatments worked for me. I was exhausted and full of aches, pains, generally so ill. Within hours of starting Paxlovid I felt much much better. I am grateful to the scientists who developed the drug. It tastes terrible, but just drink lots of water whenever you need to, to wash the taste away.
By the way, I am not trying to talk over or contradict anyone who is good enough to reach out to you during this perhaps scary time. I had a second bout of covid that was much easier on me, just a sore throat, and while I did isolate and take Paxlovid, I think I would have recovered without it, that time. I am many times vaccinated.
But my first bout was really horrible until I started on Paxlovid. I did develop a rebound infection that was quite virulent (they measure that as well as the mutations in Paris clinics) and was given a second round of the drug, which helped me get back home to the US where I recovered fully. I had had to postpone my flight home, incurred high hotel bills, so enormously grateful for both the first and second rounds of Paxlovid that I took.
Wishing you a speedy recovery and progressively better good health on your CLL journey.
No one mentioned lab results following a run in with Covid. I had chemo (BR) eight years ago and my blood labs have been in the normal, just, range for an almost equally long time (5yr). My Covid was simply a cough and I got Paxlovid which gave me relief with no relapse after the five days. My CLL blood labs two months later were frightening so we did blood labs three months after that as opposed to the usual six months. The three months later labs were close to being my normal but not there yet. We’re all different but my care team know a lot more than I do so I place my trust there. Best of luck and a speedy recovery.
Reetywell71, oh dear , I hope you get feeling better! I agree with AussieNeil: follow the science. The advice given by your clinic is right on. My one addition would be: really Tylenol should just be given for discomfort; it’s not necessary to bring a fever down, (unless it’s super high) as it’s your body‘s way of fighting. And as you saw, it just masks a temp that could tell us we need to be seen. Just a thought. It won’t hurt, just is not necessary. Yes Paxlovid as soon as possible, and NO Invermectin! I sure hope you get through this without too much trouble! I’ve also made it this far without Covid, thank goodness, and still wear a mask ananywhere I go. And strict handwashing! Even with the dirty looks I get! I Covid test often and so do all my friends before we gather. That’s just how I roll! Best of luck, Julie ❤️
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Islandjewel23
I've not seen any other references to the contraindications Paxlovid is rumoured to have with other medications. One of my co-morbidities is Atrial Fibrillation, and - in preparation for any positive Covid test - I asked my cardiologist what they would advise in that event. He didn't give me a definitive answer, but did tell me that there are around 650 medications that Paxlovid is known to react unfavourably with.
It may have been 630, but one of those two numbers. Quite a lot, anyway. That was in September 2023, and as I haven't had Covid to date, I haven't had to face that dilemma. (I attribute my Novid status to wearing my FFP3 (N99) respirator, well-fitted and consistently, in every shared indoor space.)
Just another thought to add into the mix. Good luck! 🖖
Reetywell71, fotunately, I got through it without stopping my Brukinsa and not having Paxlovid. I am 76 years young. I had fever like you and many aches like the flu. I pretty much stayed in bed 3 days, drank a lot of water and soups. My hematologist/oncologist did not want to stop the Brukinsa. I do have the Rx paxlovid now in my medicine cabinet if there is a next time. This was my 4th covid and I have had the shots. My doctor feels I got through those episodes OK because of the shots.😊Sandra
Hi,
Paxlovid has only a small window to be effective. I will NEVER regret taking it. I was incredibly sick. I think the combination of IVIG and Paxlovid is why I am here today. MD Anderson is a top notch facility, I would not hesitate to take their advice.
Best,
Sandy
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