The more symptoms the better? Covid-19 vaccine... - CLL Support

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The more symptoms the better? Covid-19 vaccine side effects and long-term neutralizing antibody

gardening-girl profile image
21 Replies

I've just read the extensive discussion about post-vaccination side effects initiated by Sharastani "After COVID vaccination, when do ‘side effects’ become an ‘adverse reaction’?" healthunlocked.com/cllsuppo...

Having read the discussion, I feel compelled to share with you two studies of which I have been made aware today due to a post on CLLSLL@ Groups.io.

Both studies show a positive correlation between post mRNA-vaccination symptoms and antibody production. 🤗 They are the first that I've seen showing such a correlation. You can read the papers and maybe feel a bit less negative about your own unpleasant side effects.

Study 1 - "We found that certain symptoms (chills, tiredness, feeling unwell, and headache) after the second dose were associated with increases in nAB at 1 and 6 months post-vaccination, to roughly 140-160% the level of individuals without each symptom.

"The more symptoms the better? Covid-19 vaccine side effects and long-term neutralizing antibody response" is not yet peer reviewed.

medrxiv.org/content/10.1101...

Study 2 “In conclusion, systemic adverse reactions after the third vaccination were beneficial in achieving high peak values and maintaining humoral and cellular immunity.”

Association of systemic adverse reaction patterns with long-term dynamics of humoral and cellular immunity after coronavirus disease 2019 third vaccination

Sci Rep. 2023;13(1):9264 nature.com/articles/s41598-...

Sadly, I have experienced no side effects from my multiple mRNA vaccinations and have produced very low antibody titers.

gardening-girl

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21 Replies
kitchengardener2 profile image
kitchengardener2

That all makes interesting reading! I was told at some point that having a reaction to any vaccine is good because it indicates that it is working. Some 60 years ago I had a TB vaccination and developed a reaction, this was good they said, it was working! Incidentally it was after travel vaccinations that my CLL first surfaced. I have now had 8 Covid19 vaccinations and I have had just one antibody test which showed low to zero antibodies for Covid19. I haven't noticed any side effects for any of the vaccinations. We can only hope that they are hiding somewhere. Come out, come out wherever you are!!

ErieSailor profile image
ErieSailor in reply to kitchengardener2

I’m slightly suspicious of the CoVid vaxxes. Like what you appear to note, My CLL appeared around the time after my CoVid vaccine. Wonder if there’s a study going on somewhere about any correlation?

bennevisplace profile image
bennevisplace in reply to ErieSailor

ErieSailor, if your CLL is of the mutated type, the chances are it's one of the slower progressing types too. That being the case, when it "appeared" (in a routine blood test?) it would have been present in your bone marrow, lymph nodes and blood for at least two decades before Covid appeared.

Thursday45 profile image
Thursday45

I had another Covid jab yesterday, I think that was my 6th, I’m losing count. After the first one my arm was painful for about six weeks but I had no effects after all of the others, however, I was quite uncomfortable yesterday evening and through the night with a painful arm. I’m seeing this as a positive sign. Thank you for the update.

RosettaClapp profile image
RosettaClapp

I've had 7 jabs and only had a very slight reaction to one of them. Vaccination 8 coming up this Friday so we shall see.. I did have an antibody test after the 6th and it was negative btw.. But I will continue to take what is offered.. I did read that T cells can be helped by the vaccine

kitchengardener2 profile image
kitchengardener2 in reply to RosettaClapp

Yes that's what I am hoping.

Pearlpink profile image
Pearlpink

gosh doesn’t that make a difference to the way the symptoms feel! 🤗

Sanders9 profile image
Sanders9

My husband is the one with CLL. He has had all the covid vaccinea and has really big reactions but has no antibodies

CLLBGone profile image
CLLBGone

Ive had all the covid jabs ... terrible reactions each time ..... Covid 4 times for me ...... bring back Evusheld, or some variation of that medication

Justasheet1 profile image
Justasheet1

Were any of these studies prioritizing immune compromised subjects?

We routinely have abysmal outcomes with vaccines but the general consensus has always been it’s worth a shot; quite literally.

For me, I have never made a single antibody post vaccination. However post Covid infection on 11/2022 I was tested three months later and I had around 300.

I have been on ibrutinib all throughout the Covid era.

I have not had my booster this fall as I am on the fence and I am not an antivaxer. I just don’t know if it will work for me and I am not going to stop my ibrutinib, which I know works, for something that I am not sure about, just in the hopes that stopping my cancer medication helps with the vaccine efficacy.

Of course stopping my medicine hasn’t been proven but is being studied to try and boost the efficacy to that of an immuno- competent individual

Jeff

gardening-girl profile image
gardening-girl in reply to Justasheet1

Jeff, a reminder:

“Here, we collected PB samples from individuals prior to and after vaccination to ascertain how T-cellular immune response emerged after SARS-CoV-2 vaccine. We identified significant increases in both CD4+ and CD8+ total T-cell frequencies following vaccine administration in CLL patients independently of the serological status.“

Immune correlates of protection by vaccine against SARS-CoV-2 in patients with chronic lymphocytic leukaemia BJHaem 09 December 2022

onlinelibrary.wiley.com/doi...

I also decided not to stop ibrutinib prior to my 23-24 Moderna covid booster. What will be, will be.

bennevisplace profile image
bennevisplace in reply to Justasheet1

Further to g-g's reply, several studies have shown that Ibrutinib treatment has an off-target benefit to T-cell health. A couple of those studies have a heavy Abbvie coloration, but this is one of the clean ones ncbi.nlm.nih.gov/pmc/articl...

bennevisplace profile image
bennevisplace

This is interesting stuff, thanks g-g. And well timed from my standpoint, since I had a 6th (maybe 7th?) Covid shot yesterday. I was going to wait a month or two, but I stepped in for my wife when she cancelled (long story). So yesterday's Covid bivalent follows less than 4 months from the previous Covid bivalent.

Matter of fact, this was a Covid shot in the left arm and a flu shot in the right arm, both variants for the over-65s, the same combination I had last October except that both vaccines have since been updated.

Usually my vaccination side effects are mild and disappear within 24 hours. This time, all was good until vax +14 hours, tucked up in bed, I got the shivers, which kept me awake for an hour or more. Eventually I fell asleep and in the morning just felt achey and unwell. Now, 30 hours after vaccination, I'm almost back to normal. Hoping that the chills indicate a durable immune response to one or both vaccines!

Justasheet1 profile image
Justasheet1 in reply to bennevisplace

Benn,

I always have a pretty good reaction but never produce a single antibody. I’m hoping that it works for you.

Jeff

bennevisplace profile image
bennevisplace in reply to Justasheet1

Thanks Jeff. I tested my antibodies after #3 and they were just above undetectable. Now that Covid is a milder illness I have taken a few more calculated risks, while continuing to use an FFP2 mask in most enclosed public spaces. Any vaccine protection is a bonus I'm not going to count on.

bennevisplace profile image
bennevisplace

Thanks Jammin. I did ask and the supervising nurse told me it was bivalent Comirnaty, but she may well have been mistaken. I see that the NHS is now using the XXB.1.5 formulation gov.uk/government/publicati...

bachplayer13 profile image
bachplayer13

well this is encouraging. i thought i had read prior studies that said there was not a correlation between side effects from the boosters and antibodies.

i get VERY ill after my covid boosters. (not the first one but all subsequent boosters). 104 fever for around 24 hrs with a gradual decline over a few days, nausea, weakness, horrible body ache's headache, the second time lymph nodes swelled to the sizze of oranges and took two weeks to resolve! no lymph nodes in shots #3 and #4.]

i am over due to get my booster becuse i'm enrolled in the vdy222 covid monoclonal AB study. but once i get infused with the first infusion in one month i can get immunized. i've not have covid so far but i take precautions masking in all public places. asking ppl who come into my house to mask. my hb does not mask anymore hasn't in a long time. he got covid last year and i managed to avoid getting it!!! we masked for 10 days and i wore my mask 24/7 including when i slept. (a good demtech N95 not particularly comfortable or easy to breath in btw). i was part of the LLS study and after the second booster i didn't have much antibody but after the 3rd i think i was over 250. so maybe it was the antibodies or "T cells protecting me. i am on zanubrutunib and i did take the evusheld when it worked and was available.

gardening-girl profile image
gardening-girl in reply to bachplayer13

bachplayer13, please remember that this paper has not yet been peer reviewed. Also, when you look at the data you will see that the range in responses is VERY large, as for example in the attached figure of neutralizing antibodies on the left and number of post-vaccination symptoms on the bottom, chills, tiredness, feeling unwell, and headache being the most predictive of neutralizing antibodies.

BTW, have you had your VYD222 infusion yet? Thanks so much for participating in this trial! I do hope that the infusion is trouble-free and that you continue to be Covid-free!

Plot of N antibodies on the y axis and number of post-vaccination symptoms on the x axis.
bachplayer13 profile image
bachplayer13 in reply to gardening-girl

thanks for that graph. yes that's quite the data spread and i understand its not yet peer reviewed

PaulaS profile image
PaulaSVolunteer

Thanks for this post, Gardening Girl.

I’ve heard different opinions on the significance of side effects after vaccinations. This study suggests they are a sign of good antibody production - which is comforting for those suffering nasty side effects.

However, up till now I've been more convinced by evidence suggesting that side effects can be caused by lots of factors and are NOT an indication that antibodies are being produced. And lack of post-vaccination reactions is NOT a sign that nothing is happening - which is comforting for those who don't have any side effects and might be tempted to think their vaccinations have been a waste of time.

I’m just an example of one person, but the following is my experience.

After each of my first three Covid jabs, I had fevers, nausea and deep tiredness for up to a week. An antibody test taken a few months after the 3rd jab, gave me a number of 163 u/ml Covid antibodies. Better than nothing but not great.

But after my 4th Covid jab, I had no side effects at all. I was pleasantly surprised but wondered if the jab had done me any good! However, a month later, a test showed Covid antibodies of 1744 u/ml. So, a tenfold increase! With no nasty side effects involved! :-)

I realise this doesn’t prove anything about how much protection these antibodies gave me from Covid. A person’s immune system is far more complicated that numbers of antibodies in the blood. A lot of things have to work together to fight infections.

Also antibody levels will decrease with time, and my first blood test was done 3 months after my 3rd jab, yet the second test was done only one month after the 4th jab. So it isn't a straight comparison. But it still made me think that good antibody production is NOT dependent on getting nasty side effects.

******************************

Last summer I was overdue for a booster Covid jab. I’d actually booked a date for it then started with a cough and sore throat. I assumed it was a common cold but when symptoms got worse, I did a test - positive for Covid. :-( I did ring to ask about getting Paxlovid but was told it was too late - l’d had symptoms for too long.

For a few days I felt terrible. Extremely sore throat and cough. Hard to sleep. Runny eyes, runny nose, nausea, dizzy, no appetite, no energy, felt generally “very ill”. I didn’t have any fever though, and never got breathless in spite of having poor lung function (COPD).

If I hadn’t done the Covid test, I would have assumed it was just a nasty flu-type virus, similar to other non-Covid viruses that were going around at that time.

My symptoms soon improved but it took a lot longer to feel back to normal. I’ll never know how much worse it would have been if I’d never had any vaccinations. Or how much better it would’ve been if I’d got my booster a few weeks earlier.

Sorry for the long ramble. Just one person’s experience of vaccinations, antibody tests and getting Covid.

Paula

gardening-girl profile image
gardening-girl in reply to PaulaS

Paula, thanks for sharing your vaccination, antibody levels, and Covid experiences. For sure there are so many unanswered questions, and such a wide range of responses to vaccination, neutralizing antibody levels, as shown above, being only one example.

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