Reactions to COVID boosters: Hi, I've been... - CLL Support

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Reactions to COVID boosters

SAT_poet profile image
20 Replies

Hi, I've been getting the COVID boosters in the UK on a regular basis, but my reaction each time has gotten worse. With the one six months ago and the one last week, I was wiped out for 24 hours afterward, which hadn't happened with the previous boosters. The pharmacist last week was surprised at my increased reaction, as all of my boosters have been Pfizer. My sister, who is a medical professional, says the booster is changed slightly each time to protect against new strains, so that maybe I've just been sensitive to the previous two boosters.

I've never had COVID (as far as I know, knock wood), yet I'm very(!) committed to staying protected through the vaccines.

I wondered whether my 24-hr wipeouts have been due to my CLL and weakening immune system. I'm on W&W and my WBC & lymphocytes have been climbing slowly & linearly, with enlarged lymph nodes now visible in my neck. I'm feeling weariness slowly creep in. (Thankfully my next appt with my CLL doctor is a month away.)

Has anyone else experienced increased reactions to boosters?

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20 Replies
Stewie_1968 profile image
Stewie_1968

Hi Sat It's Stewie I needed to stop the boosters a couple of years ago regrettably due to the side effects including palpitations etc .

You are correct they do tweak it so to speak to allow for new variants etc

I tested positive to COVID around 6 weeks ago it was it was on the Good Friday so I had no support with anti virals or monoclonal antibodies due to the team ( COVID POD ) not working or only working limited hours , I had a call Tuesday but I had tested negative by then and was feeling much better . It was the first time I had tested positive but I may have picked it up with realising it was covid , I work on the wards as a registered General Nurse they stopped testing routinely on the wards a while ago for the staff any way .

Go and speak to your GP or hematology nurse about your concerns .

I'm not sure is your wipeouts are due to your CLL that's one for your team to investigate hopefully your consultant will check on your next appointment make sure you tell him everything

Do you know what your last blood test results were FBC you can check your Hb and red blood cells etc but I'm sure if there was a problem with these your team would have been in touch

Some times the stresses of CLL can be enough to make you feel exhausted

Best wishes

Stewie

SAT_poet profile image
SAT_poet in reply toStewie_1968

Hi, Stewie, thanks for all the info, and I'm glad you're feeling much better now. I will talk to Haematology when I see them in about 4 weeks. My last FBC was in January, and my RBC and Hb were low normal. My next FBC is in about 2-3 weeks, so we'll see how much levels have changed. The NHS app allows you to see recent test results almost right away, which means we don't have to be kept waiting.

Best wishe,

Sat

Skyshark profile image
Skyshark

Before treatment with V+O i had no reaction to COVID-19 vaccinations. AZ for first 3 shots in 2021. Pfizer for spring and autumn 2022. Started treatment Easter 2023. Delayed Pfizer jab to middle of cycle 3. Felt completely wiped out for 2 days. Autumn it was Pfizer again and again I felt completely wiped out. On the day I had the jab, I woke up on the sofa at 10:30pm, smart watch said I had a high temperature. Took my temperature with a digital thermometer, 98.3C! Waited half an hour and took it again 37.5C, so I went to bed. Smart watch is a liar, it claims my temperature was 42 while sleeping. Scrolled back though data and Spring was the same.Just had a shot of MODERNA, that's wiped me out as well. Claimed waking temperature on 2nd reading with digital thermometer is now "Hi".

Not very surprising I feel like death warmed up.

Doctor wasn't bothered.

RedDevil74 profile image
RedDevil74

I get wiped out for 24 hours by the boosters. Had Covid twice. Ended up in hospital twice. First time I contracted whilst on BR, during the initial outbreak, and ended up on oxygen. Second time I just felt bad. Maybe my body remembers my first infection, and ramps up for war when it sniffs the vaccine.

Spark_Plug profile image
Spark_Plug

It seems to me that what we call "worsening" is perhaps the opposite. Our body's immune system is mounting a defense quicker and more assertively.

If the side effects aren't much more than an inconvenience (where medical intervention is not required) why do we react like this is a bad thing?

I've been wondering this for a while. I'm not talking about heart palpitations, breathing issues, or rashes that would be an emergency. I only mean soreness, headache slight fever, etc.

Seems like an immune response would be expected and relieving?

nitanut profile image
nitanut

Hi, my husband always, always gets bad reactions to the Covid booster. It’s getting worse too. He had his booster on Wednesday and yesterday he was really wiped out, couldn’t even walk. His mobility is bad but yesterday, it was dreadful! He’s 82, on WW for 2 years and also hasn’t seen a doctor about his CLL since August 2022! We feel like he’s been forgotten.

It always takes about 5 days for John to get over his boosters, hope you feel better soon.

Anita

Jm954 profile image
Jm954Administrator in reply tonitanut

Anita, that doesn't sound like very good care for John and I can completely understand that you feel forgotten :( . Has he had a blood test in that time at all? If not please ask to see a doctor soon, if only for reassurance.

Wishing you both all the best, Jackie

nitanut profile image
nitanut in reply toJm954

Hi, thank you for your reply. He saw the haematologist in Aug 2022, he sent me a blood test form thru the post for a test to be done in March 2023. We did that, it went to the hospital via the GP (as we were told to do). Heard nothing since then! I think I need to see if I can speak to Johns GP. He’s had other health issues and we’ve spent more time at the hospital with those lately. Quite a few blood tests for other things but nothing specifically for CLL.

Thanks

Anita

Jm954 profile image
Jm954Administrator in reply tonitanut

Almost certainly his bloods are fine by CLL standards as hopefully he had a full blood count included in the investigations for other things. I'd still be chasing it up though

Mtk1 profile image
Mtk1 in reply tonitanut

Hi Anita, I really think your husband needs to see about his cll, 2 years is a long time, does he get regular blood tests?

Dave.

nitanut profile image
nitanut in reply toMtk1

Thanks Dave, I’m going to see if I can speak to his GP, might take a while, in the current situation🤷‍♀️

Thanks

Anita

uide3095 profile image
uide3095

Hi, yes I have had 8 now and due for my 9th next week! From the 5th onward I have had a 24hr headache and overall feeling tired, I took paracetamol and plenty of water and it goes. By the way I still got Covid, the first time was only a week after my second jab at the mid term of it but too soon I was told for it to kick in, and the second time at new year just gone but 4 months from my 8th and Ive been out and about, I think its about how you are at the time of the booster and whats going on out there, hope you do ok this time! Good luck

SAT_poet profile image
SAT_poet in reply touide3095

Thanks! The first few boosters left me feeling tired for an afternoon, so I too took paracetamol and plenty of water. But these past two times, even taking paracetamol ahead of time, I got the shivers, tiredness, terrible sleep, headache, aches all over my body, etc.--so a noticeable difference. I slept quite a bit in the second 24 hours.😴 I hope COVID didn't wipe you out too badly both times.

Spark_Plug profile image
Spark_Plug in reply touide3095

This isn't in reply specifically a reply to you uide3095, so please don't take it personally. The flow of anecdotal responses seemed to start hear so it seemed best to start here for continuity.

"By the way I still got Covid..." That's the second part of the vaccination complaints I am constantly hearing.

Nowhere in the literature have I yet read, "You are guaranteed not to get COVID by getting a booster".

The vaccine is not a magic bullet. It is an effective reducer of some transmission and is mitigatory in how severe the outcome of the virus attack. Most people do not DIE anymore, they do get sick, even hospitalized.

I'm simply gobsmacked, that a group of people who are immuno-compromised and spend so much time trying to learn about a cancer that attacks the immune system, do not transfer their knowledge over to real life application.

True we all are different and some unfortunately are not a good fit for the vaccines, and they have my deepest sympathies (I hope your doing all you can to avoid contamination, we should anyway).

I truly think a large part of it is perception, of course, if one is pushing 80 they're not going to handle a vaccination reaction as if they were 30. We need to manage our expectations.

This does not mean if you are experiencing any of the severe listed side effects one should tough it out, Rather seek immediate life saving medical attention! Always consult a medical professional for guidance on any medicine you consider using. They are the qualified persons most familiar with your medical condition and can make the best judgement about a prudent course of action.

Nucleusman profile image
Nucleusman

yes had a bad reaction mostly more fatigue and a general feeling of weakness probably poisoning our bodies by now. had moderna version

Mariacat01 profile image
Mariacat01

Hi .I had my boidter a couple of weeks ago and I had a bad headache for 2 days after .I haven't had a reaction previously but I had a different make

Mariacat01 profile image
Mariacat01 in reply toMariacat01

I usually have pziefer but this time Moderna

SAT_poet profile image
SAT_poet in reply toMariacat01

Same here. I've just seen on my NHS app that the one last week was Moderna and the ones before had all been Pfizer.

New-bee-cell profile image
New-bee-cell

Yep. My experience is very similar. This time (2 days ago) was more difficult than the one 6 months ago. Muscle pain all over, sweats then chills. Today is better. Just pain at the injection site and a big tender “golf ball” node in the adjacent armpit. I have the SLL version so my nodes seem to swell with all vaccines. Fortunately, I have not yet contracted COVID. If my response to vaccination is any indication of what the full version of COVID would be, I am more than willing to endure 24 hours of flu-like symptoms in exchange for the protection it offers. 🙂

Stavrou1 profile image
Stavrou1

Hi Sat Had mine 8th vaccine , a week ago today . The first 4 days was shivering so much, I had 2 duvet covers , and I was still shivering. Awful. Headach non stop 24/7 . My Tinnitus is bad , but worsend!! Aching all over & painful. Palpertations ... i also bled for a bit . ... Resolved to tears this last wee. My body is slowly calming down ... 🙏

I had a years treatment with V& O & been in remission since Dec !! I am not sure if this has been helpful.

🙂

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