Covid, the latest booster and Evusheld... - CLL Support

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Covid, the latest booster and Evusheld...

hayleym1004 profile image
40 Replies

On September 27th,2022, I had the Evusheld injections...I was really excited about having antibodies and some sort of protection from covid. My husband and I left for a European vacation on October 10th, still following the same protocols we've been following since the beginning of the pandemic. It would seem that the rest of the world no longer thought the same and it was rare to find anyone masked up. By October 16th I was starting to feel run down, had a sore throat and the sniffles....I didn't think too much about this as it was a big change in climate and my sleep schedule was off.I happened to mention to my husband I wasn't feeling well and he pulled out the covid tests he brought along....we had each taken a test before the trip which was negative...however this time the result was positive...just Incase there was an error I took a second test....which was also positive. I can honestly say I was afraid...that night, my symptoms went from 0 to 60 in about 10 seconds....the sniffles became mucus filled congestion in my nose and chest....it felt like I had a wall of phlegm in my throat...and then the coughing started....almost non stop....my ribs hurt so much! On the 17th we were on a train to Paris (we had been in Nice)....I could barely move and couldn't keep my eyes opened....by the time we got to the hotel, my husband was on a mission to find a pharmacy that might have paxlovid ( which I learned about from this forum) as well as some sort of cough suppressent....after going to five different pharmacies,he finally found one that had it in stock,however we needed a prescription. Next mission was to find a French doctor who spoke English....now it's Tuesday and the window of opportunity for Paxlovid is becoming shorter....but fortunately my husband found a doctor who was available to do a video interview. I told the doctor I had just recently received Evusheld and had all the vaccines except the latest one, but was going to do that soon....bottom line was by 5pm that night I had my prescription of paxlovid and something for body aches and pain....guess it was the French version of Tylenol. So now I'm wondering why didn't Evusheld work....was it because I had a variant? How does one find out what strain of covid they have or had? How long do I have to wait to get the latest booster against the variants? Should I even consider getting Evusheld again if the virus keeps mutating and all we have are variants?

As for paxlovid I still have 9 pills left out of the 30 I need to take...I'm not at 100% but so much better than how I was. One thing I noticed about a day before was I was sweating profusely....not night sweats but all day sweats in 30 degree weather...I have never done this before. Is this a symptom of covid or something called the Cytokine Storm?

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hayleym1004
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SofiaDeo profile image
SofiaDeo

There are few guarantees in medicine. Just because you got antibodies, or vaccines, doesn not guarantee you won't be infected. It lessens the chances of illness, and the severity, in large groups of people. Evusheld was never promoted as a guarantee to prevent Covid infection, I don't know why you think "it didn't work."

As far as "what variant you have", it would need to be tested. If there is a language barrier, I am not sure how you can easily do this. Unless you have or purchased international health insurance, I am not sure this testing would be covered.

Speak with your oncologist regarding how soon you should be vaccinated after return.

Whether or not to get Evusheld again, will be determined by what variants are around when you are next due, and what your oncologist in your region of the US thinks, but don't worry about it until later. Just, please get well quick, and feel better soon.

When one is ill with an infection, ones temperature can rise and you may sweat profusely. Sweating per se is not an indication of cytokine storm. Sustained elevated temperature is more indicative, and trouble breathing. here's a "non techy" article:

health.com/condition/infect...

Pulse oximeters are a simple device that's not too expensive that can track the oxygenation level in your body, if you have concerns. But if you didn't bring one from the US, you might want to make sure any you purchase in France does Fahrenheit degrees as well as Celsius temperature readings or you would have to convert the numbers. Many do, just, double check. Is there a concierge you can ask, for a pharmacy/chemist where someone speaks English? Or have something rush shipped to the hotel from Amazon? Unless you have other comorbidites that put you at severe risk, or are having awful symptoms, IDK if you really really need one, if it's difficult to get right now. If you are feeling much better and having fewer symptoms on the Paxlovid, I doubt there is a cytokine storm going on. Just rest, hydrate, keep temp down, try to stay comfortable.

hayleym1004 profile image
hayleym1004 in reply to SofiaDeo

Appreciate the article...as for the sweating, I never did have a fever...the first hint of a fever was on Tuesday and at that time it was 99.4. I know vaccines and Evusheld won't stop you from getting the virus, but lessen the severity of it. I guess I was just expecting my reaction to be a mild cold, rather than feeling like I have bronchitis....which I have been prone to getting most of my life, along with several bouts of walking pneumonia. Oximeter was purchased since we didn't bring ours with us. I do hope I get better soon as I've spent the last 5 days quarantining and we have 3 days left before we head home...on a positive note, at least I get to look out of the hotel window instead of being in a hospital bed!

SofiaDeo profile image
SofiaDeo in reply to hayleym1004

If you have been prone to respiratory problems, then IMO the Evusheld/Paxlovid may have prevented you from having to be hospitalized! Much better to look out a window in a hotel I agree!

FWIW, if you are concerned about rebound, Pfizer says a second course may be reasonable, similar to how some patients need longer treatment with other antivirals and antibiotics. The FDA has said there isn't enough data to support doing this with Paxlovid, but someone has to study it IMO for there to BE any data. Dr. Fauci did an extra 5 day course when his rebound had him experiencing worsening symptoms. So not just the fact of rebound, but rebound + getting sicker. If I get known Covid, am really sick, and rebound and am once again really ill on rebound, I will advocate for a second course for myself lol

abcnews.go.com/US/fauci-tak...

hayleym1004 profile image
hayleym1004 in reply to SofiaDeo

I hoping I'm spared the rebound effect, but if not I should be back in the states and have a doctor about ten minutes away. Even if I don't have a rebound I was planning on seeing the doctor to make sure I don't have bronchitis.

onu1tadi2 profile image
onu1tadi2 in reply to SofiaDeo

I am not convinced the vaccines helped in keeping them out of hospital because the program here in Toronto gives unvaccinated immunosuppressed people paxlovid and it keeps them out of the hospital. As for masks they are good to prevent getting hit by germs from someone sneezing nearby, but i am beginning to wonder if they also could do harm if worn for long stretches as they build up germs instead of allowing air currents to reduce concentration of bacteria.

SofiaDeo profile image
SofiaDeo in reply to onu1tadi2

If you search through data on hospitalizations shortly after the vaccines became available, you will see not only a decreased overall rate, but the majority of those hospitalized on a vent or in the ICU were unvaccinated, even when adjusted for co-morbidities. So the vaccines *do* decrease the number and severity of disease, as intended. Then at least some of those people may not have even needed Paxlovid in the first place, as well as, preventing asymptomatic transmission in those who get sick but have very few/mild symptoms. IMO this is the big, big problem with Covid compared to influenza or some other respiratory viruses. With the other viruses, people generally feel ill when they are contagious. With Covid, one can shed before any symptoms even show up, IF any symptoms are going to show. On top of, Covid causing severe disease unexpectedly. Someone commented on an earlier post along the lines of "the people here have seemed to mostly have mild disease". Those who died or are still in the hospital/weak from Long Covid won't be posting. IDK if there is any way to see the numbers of people who were posting on HU before Covid, who are now inactive. I doubt their disease state went away.

onu1tadi2 profile image
onu1tadi2 in reply to SofiaDeo

Shortly after vaccines arrived things were different. Now many have had 6 vaccines. That is an unprecedented, barely researched phenomenon and some studies now suggest this number of vaccines has lowered people's immunity generally, so any illness is harder for body to fight. I believe generally the body's own immune system must be cared for through healthy living habits and in many cases works best with the minimum of interference from drugs or vaccines. Would you suggest I, as an unvaxed person (for covid), start loading up on all the vaxxes I have missed although they provide negligible antibodies, and the available drug paxlovid has kept unvaxed infected people out of hospitals?

AussieNeil profile image
AussieNeilPartnerFounder Admin in reply to onu1tadi2

With respect to your "and some studies now suggest this number of vaccines has lowered people's immunity generally, so any illness is harder for body to fight."

I couldn't find any such studies, but I did find:

Do COVID-19 Vaccines Disrupt the Immune Response? - Dr Paul Offit

chop.edu/centers-programs/v...

"While the cell is making the spike proteins, it's making a variety of other proteins using messenger RNA, none of which affect the immune system negatively; none of which sort of downregulate the immune system; none of which cause a perturbation of the immune system."

So, there is no reason to believe that the SARS-CoV-2 vaccines would do that. And there's certainly no evidence that it does that. In fact, quite the opposite, the SARS-CoV-2 vaccine doesn't weaken the immune system, rather it strengthens the immune system because now finally, you have antibodies against this virus, which can cause severe and occasionally fatal infection."

You are best off having the recommended vaccines and Paxlovid.

Neil

CycleWonder profile image
CycleWonder

Most of the people I know who caught Covid this year either went to the gym or traveled. Covid is still lurking around it seems. Some seem to have mild symptoms; others are hit hard although avoid hospitalization.

I am glad you are quarantining now until you test negative again.

I’m a little confused why you took the train to Nice after testing positive the day before.

hayleym1004 profile image
hayleym1004 in reply to CycleWonder

Actually it was a train to Paris....it was our last night in Nice and we had reservations at a hotel in Paris....I had no fever and wore a mask the whole time....I wasn't by anyone other than my husband. As soon as I got to the hotel, I never left the room, nor did I allow the staff to enter....towels and toilet paper were left at the door.

mdsp7 profile image
mdsp7 in reply to CycleWonder

She is abroad and not at home where the option of isolating is very different. Once your hotel reservation is up, you are out on the street, and on your own. She had a ticket to Paris and had a hotel room available and waiting. She needed to get to that bed, no? It seems clear enough to me. Even though being on a train from Nice to Paris while sick is not ideal, and may even seem irresponsible, it really isn't. Sometimes, as they say, in times of great danger you have to walk with the devil until you are across the bridge.

I just went through this conundrum myself: you want to do the right thing, but what is it? I had to take a taxi across town when I was feeling ill. It seemed ruthless of me, but what was the alternative? I kept my window open and my mask on, used hand sanitizer and hoped the driver who was unmasked and spent his days driving strangers around in a town known to have extremely high levels of covid, would not get what I had and would not pass on to me something that he may have had. It was a challenge to navigate Covid in Paris with almost all hotels booked and incredibly expensive. The only place I found that had 10 continuous nights available cost upwards of 2000 euro (~$2000) per night. Really? Oh dear. Out of reach for me.

But if you book in advance, as hayleym1004 must have, the rates are more affordable and you can have a string of days in a row, and not have to pack and move in the middle of your treatment, guiltily leaving a large tip to the poor unknown room cleaner whose lot it is to strip the bed of your contaminated sweat soaked sheets, only to have to resettle in a new place, by yet another taxi, several times, as I was forced to do before I was well enough to fly home. It was freaking tough and upsetting to have to confront all the miserable compromises. I am just glad to be home where I can stay put, order groceries in, and use my washing machine.

CycleWonder profile image
CycleWonder in reply to mdsp7

Your experience and the experience of others is why I won’t travel now. It’s too easy to get exposed by people who are contagious. And as you aptly noted, when one is traveling, one has fewer options to isolate.

It is depressing that Covid is still a threat and may get worse this falling and winter.

mdsp7 profile image
mdsp7 in reply to CycleWonder

Your point is good. However, it is heartbreaking to miss holding the grandchildren that you never knew you would survive long enough to meet. Though having Covid in Paris was upsetting scary and nerve-wracking, I am glad I had the time with them. I hope to see them again someday, soon. Unfortunately, living on different continents, for this to be so, travel is not optional. I waited more than a year to meet my first grandson. I was there when my second little grandson came home. I love those little people, as I love my dear far away daughters, very, very much! There is nothing, nothing, like being together, in the same place and time. But I understand and respect the need to face what needs to be faced. And when travel is too perilous for ourselves and others, we may have to refrain.

CycleWonder profile image
CycleWonder in reply to mdsp7

I don’t have any answers. I had naively hoped that with our more advanced medical knowledge of infectious diseases compared to 1918 that the world would have been able to crush Covid much faster than the Spanish Flu Epidemic. I did not understand at the time how a virus can mutate to avoid immunity from previous infections or vaccines. And I did not foresee masks and testing becoming a political hot potato in the US.

So here we are.

hayleym1004 profile image
hayleym1004 in reply to mdsp7

Thank you! I can't tell you how distressed I was traveling knowing I was positive with covid...but we had made arrangements months in advance. Our trip consisted of Switzerland (4 nights), Nice (2 nights), Paris (4 nights), Amsterdam (4 nights) and then home....this whole time I've been sick I've been feeling like Dorothy from the Wizard of Oz....clicking my shoes saying, "there's no place like home!" I am so ready to go home...we leave on Monday!

Davidcara profile image
Davidcara

The Evusheld may be working, you will never know for sure. It might not be to difficult to find out the prominent variants are in your area, and if they are neutralized by Evusheld. Not sure I would bother at this point. You have no idea how much worse your covid could be without Evusheld. So maybe it helped, maybe not.

I did not see anywhere describing if you are on CLL treatment. If you are, might be worthwhile trying to get hold of your oncologist regarding weather to continue or hold treatment.

How is your husband? If possible might want to line up some Paxlovid for him, just in case.

Good luck, hope it goes ok.

hayleym1004 profile image
hayleym1004 in reply to Davidcara

I am still on watch and wait...my latest labs in July weren't too concerning except for my platelets....they went from 121 to 91....went back in September when I got the Evusheld and platelets were up by 4....next appointment is in February. As for my husband I've been very concerned as he is diabetic....he mentioned that he had a scratchy throat so I made him take a test...it was negative. Before we left for this trip, he had the latest booster as well as a flu shot...so far so good!

sandybeaches profile image
sandybeaches

I hope you feel better soon. Please complete your course of Paxlovid even if your sypmtoms subside.

Sandy Beaches

hayleym1004 profile image
hayleym1004 in reply to sandybeaches

No worries there...I am definitely completing the meds. I am not 100% better....at this point I feel like I have a sinus infection or mild bronchitis. Last night was the first night I didn't wake up every 2 hrs coughing!

RZ8983DV profile image
RZ8983DV

I also sweated when I had COVID but it was on and off not continuous. I could have picked it up in the gym but I think it is more likely to have been a trip to London by train and eating in a crowded outdoor

hayleym1004 profile image
hayleym1004 in reply to RZ8983DV

From what I've seen before I quarantined it wouldn't be hard to catch covid on trains, trams, metros or planes....these places were always jammed packed with people and maybe it was my imagination but the only people masked were me and my husband! I heard so much coughing everywhere, I kept envisioning all the droplets spreading through the air! I wasn't used to be surrounded by so many people-it made me uncomfortable.

hayleym1004 profile image
hayleym1004 in reply to hayleym1004

Also, it was really bizarre....we were in Zermatt and took a train to see the Matterhorn....it was less than 30 degrees outside-as a Floridian I should have been shivering from the cold, but I was sweating so much I soaked my shirt, my sweater and my jacket and my hair was drenched with sweat....I was like that all day long....the same thing happened in Nice and during a side trip to Monte-Carlo...it was that night I tested positive for covid...no temperature, just sweating, sniffles, sore throat, and dry cough.

RZ8983DV profile image
RZ8983DV in reply to hayleym1004

The train journey in question was v short about 20 minutes.Tbe outbound train was crowded but the return one was empty. Ironically I had been on more crowded trains a few months before but that was just after my 5th anti COVID shot

hayleym1004 profile image
hayleym1004 in reply to RZ8983DV

I've been questioning....how did this happen? I went away in June, flew on a plane to Tennessee, wore a mask the whole time, and never got sick...and by the way, people in Tennessee were not wearing masks.

Now I fly across the ocean, first stop Switzerland...never changing what I do to stay safe and 6 days later I have covid....the only difference was 13 days prior to leaving I received the Evusheld injections...could this have affected my immune system?

RZ8983DV profile image
RZ8983DV in reply to hayleym1004

The earlier trips were to Paris and Berlin. I went to Paris on Eurostar. I flew to Berlin. I have also travelled to the US for quite long periods. I was more concerned about |Berlin than Paris as in Paris I did not take the metro , only walked and took buses. In Berlin I took crowded commuter (S Bahn) trams and underground trains

hayleym1004 profile image
hayleym1004

I'm still taking the medicine, didn't stop...it's a 5day course of 3 pills every 12 hrs....some information came with it, but it's all in French and a bit beyond my understanding of French 😀

onu1tadi2 profile image
onu1tadi2 in reply to hayleym1004

do you use English French translation? Google "English French translate" and you can put words or whole passages into it it get very good instant translation.

FountainPen profile image
FountainPen

Evushield unfortunately is worthless against the Omicron variant which is almost 100% what is out there. They are antibodies against the original strain of the virus from two years ago. Great that paxlovid helped but take the entire cycle of doses. For me, I do vitamin D and Zinc supplements that help the immune system response (must take ahead of time not after you are ill). I have had Omicron twice (the early and current variants. And they both were like bad chest colds and i treated them symptomatically.

hayleym1004 profile image
hayleym1004 in reply to FountainPen

I'm a big believer in taking supplements....and D3 and Zinc are among the supplements I take....I had read that Evusheld doesn't work against Omicron so I suspect that is what I have or a variant of it. I'm very thankful I was able to get paxlovid, and yes I am taking the entire cycle.

So even if I have bronchitis, it's a whole lot better than what it would have been without the paxlovid! Couldn't even imagine going through this twice....once is enough for me!

SofiaDeo profile image
SofiaDeo in reply to FountainPen

It's not "worthless"against Omicron, it's just not as effective against certain variants. My goodness. BA4 and 5 are increasing in the US, but they aren't 100% of the strains yet.

fda.gov/drugs/drug-safety-a...

hayleym1004 profile image
hayleym1004 in reply to SofiaDeo

I wish I had known this....I would have gotten the latest booster instead! However, I got the injections on 9/27 and that info came out on 10/3.

onu1tadi2 profile image
onu1tadi2 in reply to SofiaDeo

In Toronto paxlovid is given intravenously. It takes a few hours and then one is sent home. Last I heard the sucess rate was 85% for nosuppressed both vaxxed and unvaxxed without hospitalizations. I wonder if that is as effective as the pill form.

Titian72 profile image
Titian72

it sound like I have the same variant as you. As I am also fully vaccinated I really did not expect to hit me so hard. The coughing is relentless when lying down, even when elevated with pillows. I did have fever the first couple of days and on the third day I sweated and then the fever did not come back. I have experienced this all my life, as soon as I sweat the fever goes. I would have thought this is the same for most people? I am on day 4 of Paxlovid and I think it is a tremendous help. I fear the coming winter wave will take lots of people down...I hope you recover soon.

hayleym1004 profile image
hayleym1004 in reply to Titian72

Yes, the coughing was relentless...I find even during the day I can go tops 3 hrs without having a coughing fit. Unfortunately, being in a foreign country it's hard to find the medicines I know that work for me like alka-seltzer plus cold and flu or Mucinex dm....no such luck finding that here. Tomorrow morning I will finish the last dose of the Paxlovid and we are heading back home on Monday, the 24th. Tuesday, I'll be making an appointment to see my doctor.

LeoPa profile image
LeoPa

healthunlocked.com/cllsuppo...

This post may be of interest to you. The whole thing is complicated.

hayleym1004 profile image
hayleym1004 in reply to LeoPa

It was, thank you!

mdsp7 profile image
mdsp7

OMG I was in Paris --where there are basically no available hotels and almost no one wears a mask, and crowds are everywhere-- and just got back a few days ago. I feel fine but to be safe I am going to get a pcr test later this morning. It's the middle of the night here. Hello person in France! I don't envy you, because I've been there, and truly, Paxlovid really helped me a lot. If you are feeling better already, that's good. But still, take it easy and get home as soon as you safely can.

I got sick around Sept. 25 and started Paxlovid on the 27. My daughter immediately connected me with an English speaking doctor online. She wrote me a prescription and I started taking it (the taste--my God!) right away. I found if I just kept drinking a few swallows of water whenever the bad taste came back into my mouth it made things much more pleasant. I also sweated a great deal during the nights, eventually that resolved more or less, but it is still sort of an issue some nights. It may be a way the body uses the skin to get some of the many toxins out. (Managing all the laundry was an issue. Good luck! You can do this!)

8 days after the first prescription, having ignored my good oncologist's advice to sadly not go back for another visit with the grandchildren, I headed over to my daughter's house to play with and enjoy my grandsons, (even though the baby had Covid), so as to leave them with an impression of a happy healthy Gra.ndma, rather than a sickly, cowering one I had been when I staggered off to isolate in my lair. But in a few days I was sick again, and totally panicked, and ended up needing a second round of Paxlovid, which was made available only after my US oncolgist, whose advice I had to confess to her that I had ignored, sent a request that I be given the second round of Paxlovid, bless her! This time, I didn't visit the grandkids until the night before my flight, and had a great time with them, the baby having recovered from the Covid, yay. I'm still not sure whether I am in the clear but I flew home feeling well and always masked, and I still feel good and am happy to be home.

Please when you finish the Paxlovid, if you feel a lot better, try to get back home on a non-stop flight. While in Paris, if you can find a hotel with room service, which keeps things clean, it helps a lot.

Currently the hotel situation there is overbooked, though. I hope you have a good room. I stayed at Hotel Le Littre in the 6th, and the rooms were nice and clean and the food was pretty decent, but if you go there, do not order the soggy Croque Monsieur. I learned a lot of French watching the TV with a dictionary.

But it was a pretty intense . You can do this! Hang in there and be creative and eat well. Bonne chance!

mdsp7 profile image
mdsp7

I had a pcr test at a lab in Paris and learned that my strain had mutations E484K/Q, L452R, and K417N. There are lots of walk-in places where you can get a PCR test for about 38 euro.

Results are available online via email within 24 hours.

I went to Biogroup at 41 Avenue Bosquet.

My daughter wrote out a note for me to give them that said:

Je voudrais faire un test PCR, s'il vous plait. Les valeurs de CT sont-elles incluses dans les resultats du test? Si non, serait-il possible de les demander?

Veuillez preparer une facture pour le test que je puisse soumettre a mon assurance aux Etats-Unis. Merci!

I received results the next day by email, which was passcode protected, and they gave me the password as I was leaving to unlock it when the results came. I found out I had a high viral load, and 3 not super great mutations, probably variant 4 or 5. It is concerning, I still feel good after two rounds of Paxlovid and a long, long day traveling home.

lexie profile image
lexie

Jammin, I mis-read it the same way you did. Relieved the conversation clarified.

Hi haleym1004

So sorry to know you are unwell but glad you have such a trnacious husband & rec'd paxlivid. Hope you feel better & better each day!!!!

Cookie

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