Do Covid symptoms last longer with us? - CLL Support

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Do Covid symptoms last longer with us?

Tangolover profile image
38 Replies

I got my first case of covid last Thursday. Started Paxlovid immediately and din't get very sick. I tested Tuesday, thinking I would be negative but still positive. Do CLL'ers take longer to shed the virus?

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Tangolover profile image
Tangolover
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38 Replies
Walkingtall62 profile image
Walkingtall62

Hi, I was positive for three weeks last December but didn’t get paxlovid

Tangolover profile image
Tangolover in reply toWalkingtall62

Wow--three weeks! Sure hope it doesn't last that long for me. Thank you for your response!

lankisterguy profile image
lankisterguyVolunteer

Hi Tangolover,

The simple answer is yes.

CLL causes damage to our immune systems, but the there is a wide range in the amount and type, but for most CLL patients, responding to any infection is slower and less effective. YMMV (your mileage may vary).

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You may have seen the results of your blood test for immunoglobulins- IgA, IgG, IgM, IgE.

The doctor believe those work together in a complex "layered" defense to deal with infections.

Our neutrophils are the first layer, IgM is next and IgG is later and includes the "memory" of previous infections and vaccines. Most of us have abnormally low levels of one or more of those layers and many have frequent infections that take longer than normal to respond.

-

Len

Tangolover profile image
Tangolover in reply tolankisterguy

Thank you for the response. My neutrophils are good. Only low numbers were in IgG and IgM. I had all the vaccines and boosters. I'm just surprised I haven't gotten over it already.

KatieBlue profile image
KatieBlue in reply toTangolover

For those of us with CLL and/or undergoing immunosuppressive treatment, vaccines and boosters may not be as effective. I was able to get an out of pocket lab test done a month post covid vaccine (doubles, immunocompromised dose at the time) and did not get a measurable amount of antibodies from vaccination.

I do see notes in appointment scheduling apps that state, “ If you are positive for COVID-19 within 10 days before an IN-PERSON appointment (or 20 days if immunocompromised) contact your clinic to discuss your upcoming visit.“

Immunocompromised/immunosppressed are also much more likely to become potential hosts for new variants.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toKatieBlue

Indeed, there have been a few case studies where immunocompromised folk with B cell malignancies (includes us), have taken a long time to clear SARS-COV-2 and new variants have developed, such asncbi.nlm.nih.gov/pmc/articl...

Neil

Tangolover profile image
Tangolover in reply toAussieNeil

Thank you for the info!

Tangolover profile image
Tangolover in reply toAussieNeil

Does this mean I am contagious the whole duration of testing positive?

CLLerinOz profile image
CLLerinOzAdministrator in reply toTangolover

Hi Tangolover,

Two negative RAT results 48 hours apart are a good indication that you'll no longer infect others. However, as you've seen in the other replies, some who are immunocompromised can take a long time to clear the SARS-CoV-2 and produce those negative test results.

"A 2023 study from Northwestern University found that people with COVID-19 exhale as many as 800 copies of the virus per minute during the first eight days after symptoms appear. So, even though the viral load may be dropping, infectious viral particles may continue to be exhaled."

"This further reinforces the need for face masks and other preventive measures once any isolation period ends (after you've been fever-free for at least 24 hours without using fever-reducing medication)."

"If you are immunocompromised, the duration of contagiousness can be longer simply because it takes longer for the immune system to control the infection. While there is no rule as to how much longer that might be, a 2023 study in the journal Pathophysiology reported that immunocompromised people have a median viable viral shedding period of four weeks. (From an article updated in June 2024: verywellhealth.com/how-long... )

"The length of time that COVID-19 stays in the body can vary, but most people who get COVID are no longer contagious after 10 days. Those with severe COVID may remain infectious beyond 10 days and need to take additional precautions.

However, there are people in whom COVID has been known to persist for months rather than weeks. While cases like these are rare, there is increasing evidence that the virus may persist in other tissues for longer than previously thought and possibly contribute to the development of long COVID."

"COVID vaccination appears to significantly shorten infection times along with the length of time a person is contagious." ( verywellhealth.com/how-long... )There has been some research to indicate that a longer antiviral course (eg ten rather than five days of treatment) and combination treatments could help the immunocompromised to clear the virus better.

"Prolonged courses of combination antiviral therapy seem to hasten viral clearance in severely immunosuppressed individuals, but more information is needed to assess whether such therapy improves clinical outcomes. Furthermore, the optimal treatment combinations and duration remain to be defined, particularly as drug–drug interactions often preclude use of nirmatrelvir/ritonavir" (From an article last updated in May 2024: jwatch.org/na56982/2024/01/... )

(my emphasis)

CLLerinOz

Tangolover profile image
Tangolover in reply toCLLerinOz

Oh my! So what I’ve been told about not being infectious is not true? This confirms my worse fears. Thanks for the info!!!

Tangolover profile image
Tangolover in reply toKatieBlue

Thank you--I had no idea about that!

Pekingese profile image
Pekingese

Hi I took paxlovid and tested positive for 2 weeks

Tangolover profile image
Tangolover in reply toPekingese

Thank you! Maybe it won't take that long, but I am sure grateful for paxlovid!

Edalv profile image
Edalv

As others have said, we are all different. I tested positive for covid at the beginning of July, I started paxlovid the following day for 5 days. On the day after my last dosage I tested negative. In total it lasted 7 days from the day I had the first symptoms.

Tangolover profile image
Tangolover in reply toEdalv

Thank you--there is hope!

GMa27 profile image
GMa27

I got covid for the first time last month. Treated it like a cold. I didn't know I was exposed till 3 days later. My PA said to isolate for 5 days, continue otc meds & call if I got worse. I was fine in a few days. But she said do not retest. I could test positive for weeks to months. So we don't necessarily have it longer, many non CLLers test positive for a long time. Doesn't mean we still " have it" or are contagious.

Tangolover profile image
Tangolover in reply toGMa27

That is interesting~I hope we can't pass it to anyone even though still positive?

GMa27 profile image
GMa27 in reply toTangolover

After 5 days after symptoms, we aren't contagious. I waited 6 to be sure. No one I was with since has gotten it. Unfortunately the body still tests positive which is confusing. Remember when people first got covid & kept testing & couldn't go back to work till negative!? Unfortunately that was false information but we didn't know that yet. People were out of work 4 weeks to 4 months! Some still tested positive.

Tangolover profile image
Tangolover in reply toGMa27

Thank you!!

RobertCLL profile image
RobertCLL

I was on paxlovid and was positive for 12 weeks!!!

Tangolover profile image
Tangolover in reply toRobertCLL

Wow!

garyherm profile image
garyherm

Hi. I also got COVID January this year, first time, got the anti-virals next day and did not get very unwell but it hung on for weeks. I was still testing positive at 3 weeks, finally tested negative around 4 weeks.

Tangolover profile image
Tangolover in reply togaryherm

Thank you for your response!

BigfootT profile image
BigfootT

Tangolover, My most recent bout with COVID was within months of my CLL diagnosis. It was my 3rd time and it wasn't much of anything more than sniffles. My doctor told me at the time the tests aren't very reliable particularly the home tests. If you feel good you're likely over it.

Bigfoot

Tangolover profile image
Tangolover in reply toBigfootT

That's good news!

bennevisplace profile image
bennevisplace

My wife and I both caught Covid last Christmas in France, and symptoms ran in parallel. We both tested regularly. From the onset of symptoms she was virus-negative after 10 days, I after 26 days. Neither of us experienced anything worse than an average cold, and symptoms tailed off in a couple of days.

Two summers ago we both caught a highly infectious RSV, which triggered a nagging chesty cough. Hers continued for 2 or 3 weeks, mine for 8 weeks: annoying but not disabling.

Tangolover profile image
Tangolover in reply tobennevisplace

All the best to you both!

Blue-bird_ profile image
Blue-bird_

My husband caught covid in December 2022 and was still testing positive in Match 2023. He never developed a cough and was given paxlovid in hospital when he first tested positive. His consultant told us he would still test positive for a while but that he wasn't contagious.

Tangolover profile image
Tangolover in reply toBlue-bird_

Good to know!

Annvaughan profile image
Annvaughan

my husband who has CLL and in treatment with Calquence got COVID for the first time two weeks ago. He took Paxlovid and his symptoms improved. Like you, he also tested positive after completing Paxlovid. He started back with fevers, cough and now conjunctivitis, looks like it’s going to take him a bit of time to get over it. So far nothing that serious. Just an annoying long cold.

Tangolover profile image
Tangolover in reply toAnnvaughan

I hope he improves quickly!

Unglorious profile image
Unglorious in reply toAnnvaughan

I hope you don't mind me asking, you posted that your husband caught Covid for the first time two weeks ago, was he wearing a mask at all when in crowds, what precautions was he taking.

I would appreciate your response.

Wishing your husband a speedier recovery.

Annvaughan profile image
Annvaughan in reply toUnglorious

We have worn mask in any indoor setting since the beginning of COVID. We almost always are the only people wearing masks when we go out. When we eat out, we eat outdoors only. We do take our mask off to eat when kids and grandkids come over. They’ll stay home if feeling unwell. We’ve canceled lots of indoor get togethers. We truly have no idea where we got it. I assume from someone close to us that showed no symptoms. The irony is we passed on COVID to one grandchild and our daughter-in-law. They’re doing fine though. Interestingly the other 3 people at the table never got COVID. Only the two people sitting right next to my husband and I.

Unglorious profile image
Unglorious in reply toAnnvaughan

Thank you so much for taking the time to answer me. COVID has just about ruined the social aspect of the life my husband and I used to lead. Because of the lack of immunity due to CLL and having to take ACALABRUTINIB to continue to survive, I mask, even double mask because I am terrified to get COVID a second time, (landed up in the hospital for 40 days in 2022). I see that you did all the things possible to protect yourselves. Thank goodness your husband is improving. Sorry, for my rant. Wishing you improved health. Take care, be safe.

Annvaughan profile image
Annvaughan in reply toUnglorious

I can completely relate. Our social life is completely different since COVID.

Cindi73 profile image
Cindi73

I stayed positive for 28 days after Paxlovid.

Tangolover profile image
Tangolover in reply toCindi73

Thank you for your reply!

Big_Dee profile image
Big_Dee

Hello Tangolover

It has been my experience that everything I contract does take longer to heal.

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