Bring up COVID boosters: Has anyone given up... - MPN Voice

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Bring up COVID boosters

NewBloom profile image
46 Replies

Has anyone given up having the Covid boosters, due to side effects?

I just had my 10th and was 50/50 about having it but decided I should. As per previous ones I've been ill, like off work do nothing unwell. Now day 3 and have nasty heart burn. I'm seriously considering not having anymore, but then start thinking, well actual Covd could be so much worse.

I'm really fed-up with these making me unwell and wanted to gage if others feel the same?

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NewBloom profile image
NewBloom
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46 Replies
hunter5582 profile image
hunter5582

I have grown more cautious with vaccines in general since being on Besremi. I still take to most important one, but opt for the lowest dose possible. I just had the Flublok vaccine for that reason. If it is available, I will opt for Novavax for my next COVID vaccine. I will opt for Pfizer if I cannot access Novavax, I always space out vaccines at least two weeks, preferably 4 weeks, after a negative experience combining flu and pneumonia vaccines.

It is worth doing some research on the side effects of each of the vaccines for any condition. There may be more than one choice, each with a different side effect profile.

Wishing you all the best.

EPguy profile image
EPguy in reply tohunter5582

Flublok is actually a high potency shot. I posted on it right after I got it, before the adverse reactions started, noting "I had near zero side effects". I missed some clues and had no idea what I was in for. As always my reaction was a rare event, but if one wants lower potency Flublok may not be a 1st choice.

It does avoid the risk of chicken egg reactions. The other "senior" vaxes are generally just a higher dose of regular ones, ~3-4 X.

I agree on getting Novavax if I resume, although I'm told not to get any more seasonal vaxes.

--

"The commercial formulation of Flublok contains three times the amount of HA (active ingredient) compared with the standard dose IIVs (egg vaxes) and consequently induces higher antibody titers,"

healthunlocked.com/mpnvoice...

hunter5582 profile image
hunter5582 in reply toEPguy

Yep. Knew that it has the Quadrivalent adjuvedent. What I wanted to avoid was the higher dosing strategies like Fluzone High Dose. Flublok has a better adverse effect profile, in general. Choosing vaccines is a matter of trying for max benefit with minimum risk. So far, Fluad and Flublok have both been easily tolerated. Can't say as one was any different than the other. The pharmacist did agree that Flublok has a better side effect profile when I discussed it. I expect that is why some of the local pharmacies are out of it.

EPguy profile image
EPguy

You bring up a timely question, how beneficial is ongoing Covid vaxing. I posted in another thread an unexpected finding from a high quality study from Cleveland clinic that a booster Covid vax gives short term protection but a history of three or more prior Covid vaxes increased broader odds of infection by a large 2.5X. It likely involves "imprinting". I may post in more detail.

The authors suggested regular boosters may not be best for lower risk pts, with unclear implications for others. My conclusion is they need to speed up the next generation of vaxes which are in phase 1 at best.

GardNerd profile image
GardNerd in reply toEPguy

I looked into this Cleveland Clinic study (which seems counterintuitive) and found this. There’s always more to be known, but I wanted to share it. factcheck.org/2023/06/scich...

EPguy profile image
EPguy in reply toGardNerd

That is a good find. Details/thoughts below. In sum, reports point to imprinting being a detrimental effect of the covid vaxes used till last year, while the current ones are expected to address the problem.

---------------

It fits with the Cleveland stud(ies), (they released more than one write up) which noted "Consistent with similar findings in many prior studies [3,8,10,12,18–20], a higher number of prior vaccine doses was associated with a higher risk of COVID-19" Associated is the operative word.

The Cleveland authors cite prior studies, their own and others, that found the same. So the observational pattern seems real, whether causative is the question.

This is the essence of the contra argument in the fact check: “The data from the study do indeed show that those who have more vaccines have more infections, but this is very unlikely to be causal in nature,”

--

This is I think the peer reviewed version. paywalled:

pubmed.ncbi.nlm.nih.gov/384...

and the full pre-print

medrxiv.org/content/10.1101...

--

I believe it may be imprinting as discussed here re an older variant for which imprinting was deleterious:

pubmed.ncbi.nlm.nih.gov/384...

"Omicron breakthrough infections and bivalent COVID-19 vaccination primarily recall cross-reactive memory B cells induced by prior Wuhan-Hu-1 spike mRNA vaccination rather than priming Omicron-specific naive B cells. "

And one that showed imprinting did occur but was a positive:

source.washu.edu/2024/05/re...

But these are both in vitro vs population based.

--

Interesting note on this last report, flu vaccines suffer a known negative imprinting effect.

" A similar problem plagues the annual flu vaccine campaign; immunity elicited by one year’s flu shots can interfere with immune responses in subsequent years, reducing the vaccines’ effectiveness." This could partly explain the low typical effectiveness of this vaccine.

It seems imprinting is real for both flu and covid vaxes, but its + or - effect on the covid vax needs further population based study.

--

Additional reports here support imprinting for older Covid vaxes:

In the WHO ref in the Factcheck report (link to"statement") " immune imprinting due to repeated exposure to the index virus (original Wuhan Strain) may reduce immune responses to new target antigen(s)"

So it's possible the orig formula and bivalent boosters were negatively affecting imprinting while newer mono valents do not. This would match the timing of the Cleveland study. Since many pts had 3+ of vaxes with the orig strain the question would be whether the minus effect is long term and whether the current mono valents overcome any imprinting.

--

Some stronger support for the Cleveland and WHO results and a hoped way out:

"it has become clear that the exclusion of wild-type spike (original strain) from the Omicron-lineage spike vaccine should help overcome the immune imprinting caused by the earlier vaccine course and better protect against the current Omicron subvariants in circulation."

pmc.ncbi.nlm.nih.gov/articl...

This population based study reproduced the imprinting effect, but only with vaxes that include the orig Wuhan strain, which was all of them till 2023. They found infection by a current strain provided good protection and propose that the current monovalent types may get around the imprinting problem. Likely we need another year to find out.

GardNerd profile image
GardNerd in reply toEPguy

Wow. This is all more complicated than we normally know -- unless we do a lot of medical reading. Thanks for being someone who does that and shares it!

EPguy profile image
EPguy in reply toGardNerd

I agree. I go where the info leads me and try to help others make sense of it. I'm also surprised by the apparent imprinting with any Covid shot that includes the Wuhan strain.

One conclusion is the flu shot is known to be hindered by imprinting. This may explain its relatively low avg efficacy. With my history I for sure won't do another one of those with current tech. Benefit/risk is low for a shot that needs regular repeats. This contrasts with the ones that work well and risk is only once or 10 year cycles ie measles, pneu, shingles...

Lets hope the imprinting is indeed solved with current covid shots as we await better ones.

GardNerd profile image
GardNerd in reply toEPguy

That's such a good point about the superiority of vaccines that are needed infrequently.

We could come up with some good conspiracy theories about the imprinting that occurs with shots that include the Wuhan strain! :)

EPguy profile image
EPguy in reply toGardNerd

Agree, vaxes are touchy on the political side. And "Wuhan strain" could sound accusatory. But it's just the term used by scientists same as "Delta" "Omicron" to specify its place in the lineage, sometimes specified as "Wuhan-Hu-1". With my history I could go nuts on the conspiracies. But I'm not that sort and science requires we follow the data either way. I do believe this imprinting angle won't be in the TV news as it's not helpful for the true mssg that vaxes are indeed a good thing, while details matter. In hindsight in light of above the bivalent vaxes may have been not optimal.

Strangely Wuhan strain is also called "wild type". For MPNs wild type Jak2 is the un-mutated ones, that would mean Wuhan strain is "un-mutated", makes sense. We're fortunate that, unlike Covid, Jak2 normally mutates only once, to v617f.

DJK12 profile image
DJK12

I've got covid at the moment - amazingly for the first time. I've had 9 jabs and was due my 10th the day after I tested positive so assume my immunity was very low by then. I usually get 24/48 hours of side effects and personally I'd rather have that than covid. I still feel very unwell a week later though I'm grateful for the anti virals which I got quickly and which certainly brought my temperature down. I was just out of hospital from being treated for a chest infection and thought if the temperature didn't come down I was going to end up back in. I gave it to my husband who also hadn't it before despite being out and about much more than me. He's been quite shocked how rotten he's felt - certainly not just 'a bad cold' . The pharmacist who prescribed the anti virals said the present variant is not considered too bad but its been bad enough! We credit the vaccinations for avoiding it so far but our luck ran out. I appreciate it is a personal choice though but we'll get our winter boosters as soon as we're 100% better.

azaelea profile image
azaelea in reply toDJK12

My husband and I got Covid at the beginning of August for the first time. I received the anti virals straight away which made me much worse, ending up in hospital for 2 days. We had decided not to have the Spring booster and bitterly regretted this as we both had never felt so ill in our lives. It lasted 3 weeks. We are definitely having our winter boosters, booked for 30 th October.

Windy51 profile image
Windy51

hi I’ve had two Covid injections and I got Covid when I had the injections so that’s enough for me good luck

Pachena profile image
Pachena

I had an anaphylactic shock to my 2nd Pfizer vac. So a day spent in hospital. Then the docs all gave me differing advice on what vac to have next.

I was unable to visit my father in care without a vaccine and I was taking my mother to visit him daily.

I saw two immunologists and they said they saw no reason to have anymore but to satisfy the system (Australia) they suggested I have the AZ vac. The docs were nervous in case I reacted again. However it was uneventful.

I have chosen to have no more after the immunologist’s advice and not to tempt another reaction 😊

At the time I was unaware I had ET Jak2A+

Best wishes 😃

Manaaki profile image
Manaaki

I remained unvaccinated for the first 2 years of Covid without getting covid. My new employer insisted on me being fully vaccinated. I opted for Novavax, had the 2 doses, 6 weeks later I got Covid and was very ill for 6 weeks requiring multiple antibiotics etc. That was over 2 years ago. Never had a booster since and haven’t had Covid again even though I am a flight attendant and I contact with hundreds of people daily. I just knew from the get go that somehow the Covid vax wouldn’t be good for me and it wasn’t. My husband unvaccinated contracted Covid at the same time as me as did my teenage kids and they were all up and about within 3 days. I don’t believe it is for everyone. In my case it was useless avoiding Covid and in fact made me very ill with Covid afterwards.

AndyT profile image
AndyT

I had my 10th Covid jab a couple of weeks ago, together with the flu one, with no significant side effects - just a bit washed out for a couple of days.

I appreciate that the jabs don’t give 100% protection but when I had Covid last year it was relatively mild, which I attribute to keeping my immunity topped up.

I’m part of the STRAVINSKY study, which measures vaccine response in those who are immunosuppressed and it’s shown that Covid jabs are working for me, so I plan to keep on having them when offered.

Kari1961 profile image
Kari1961

I've gone against the 'norm' where the Covid vaccine is concerned. I had two (AZ) and felt very ill after the 2nd... oedema. lost toenails which didn't resolve for 9 months. I haven't had one booster... and I've never had Covid. Perhaps that's just down to luck or even that I am 'naturally immune' who knows? I did have my flu jab a week ago (so not anti-vax) just anti-covid booster.

Purplechoclover profile image
Purplechoclover

Hiya, ive had no vaccines from the start just didn't trust the whole scenario that happened and touch wood ive not had any problems at all. Been type 1 diabetic for 41 years and then diagnosed with essential thrombocytopenia and portal vein thrombosis last November and my consultants or Gp have never said i must have them its my choice. Hope your feeling better soon

Anouchka profile image
Anouchka

just had mine yesterday - luckily no side effects (yet) but quite sore arm. … My flu jab was 5 days earlier as our pharmacist didn’t advise having them together, nor do I think they give them together here in France. Unfortunately we have no choice in which one; Pfizer reigns. 😆

Hillman51 profile image
Hillman51

hi ..only ever had 2.. 1st one bought on joint pain ..2nd one more joint pain ,which I am stuck with now , had no pain before the 1st jab .. if only you could turn back time ..

LFCLove profile image
LFCLove

Hi, So sorry to hear your story, personally have never had any bad reactions on previous jabs and have had Pfizer, Moderna and Astra Zeneca given. (Have never had Covid)

I am currently @69 days post stem cell transplant and am due a Covid-19 jab @+100 days as part of my re-vaccination program. I was originally advised by my haematologist to ensure the 1st two jabs were primary dose and not booster.

When contacting the vaccination centre to book a jab, they advised that there was no longer a primary and booster, now just one.

Am awaiting confirmation but now wonder how you go about requesting a particular manufacturer?

April-May profile image
April-May

I no longer have them after reading in depth about how the vax came about and what’s in it!!! I imagine many others have questioned the validity and the origins.

wormwood profile image
wormwood in reply toApril-May

Exactly, I was fine till I had the vaccine, then bam !! Sick... I was also working with covid patients...I was made to have another vaccine, so I could continue working, bam...sick again...I'm not having anymore... and I'm not working in the care industry anymore, I've seen enough!!!

April-May profile image
April-May in reply towormwood

Shame you had to stop your work but if they forced you to have vax, then you’re better off out of it. Hope you find something less stressful.

wormwood profile image
wormwood in reply toApril-May

I don't think I'll be working anymore now...I've had enough...Got enough on at home these days xx

AnBee profile image
AnBee in reply toApril-May

And the recent research out of Japan showing DNA contamination. They batches are not standardised so can have different effects in different people.

April-May profile image
April-May in reply toAnBee

Makes one wonder just who to trust hm?

Anag profile image
Anag

Hi NewBloom!

after the first Covid vaccination, I wasn't feeling well and after the first booster, my lower legs started looking brown because the spike proteins were harming my veins. meanwhile, I thought I was losing my mind I increasingly, I couldn't remember anything. After about seven months I realized it I was degenerating. I went to a very highly specialized bio resonance Doctor who was able to pinpoint the problem, as he tested me, with a vile of the Pfizer right then and there. After starting the therapy I started the therapy and then four treatments to finally destroy the spike proteins and get them out of my body. the difference in my body and mind were noticeable after each session! I would have needed one more session after the fourth but then I got Covid and although my husband had two boosters and my daughter had one booster all three of us were sick the same. But I'm the one with 750 thrombocytes. They took Paxlovid, but I didn't. My husband rebounded terribly with that as did 4 other colleagues in his orchestra. the other five that took the Paxlovid were fine quite quickly. I used nothing but natural support and I got through it well. Since I had trouble with my lungs all my life I did six hyperbaric chamber sessions at one and a half bar pressure and I was flying high for the next three months with unbelievable energy. that was 2 1/2 years ago.

In the meantime, I had Covid in July and I was fine after two weeks. at first, I took normal medicine for three days, which did nothing but bring the temperature down. As soon as I changed to the natural stuff, I was back on my feet within 2 days. this vaccine has caused a lot of harm to many people I know. d including a brain bleeding to my husband's best friend who is a cardiologist at the General Hospital in Vienna. Luckily he was at work when he collapsed and they operated immediately to take the bleeding out of his brain. it took him months to recover but he did. On the other hand, the vaccine MAY have helped a lot of people. We will never really know, will we?

I had two doses of the AZ when it became available. I was told Pfizer was not suitable for me and as only Pfizer is available here I have cancelled appointments since then. I do have the annual flu jag.

CraftySpider profile image
CraftySpider

Hello Newbloom, yes, after 7 of them ( I have MF & other health issues) I have not had the two offered this year. This was a difficult decision, and not only due to side effects, but the amount of people I know having heart problems & cancers…and ongoing research into the long term effects of having so many vaccines. I am still semi shielding and wear a mask in shops, sterilise my hands etc. I am still undecided as to whether I will have any more.

Exeter21 profile image
Exeter21

not had mine since Covid era. Made me so awful I never had another or flu & been fine despite having Covid once. I am not a believer that this injection does anything to help new variants. However if you have any other complaints effecting your breathing etc I expect better to try . Apart from ET I am healthy currently 👌

KLCTJC profile image
KLCTJC

I took my flu shot, but decided no more covid boosters for me. I had the three in 2020, that booster made me sick and I had delta when that was around. I asked my oncologist and he said he wasn’t getting anymore. So decided I am done with it, but it is what is right for me. And I am on Besremi, in the back of my mind I think I am already on an antiviral!🤣. I would talk to your doctor and your family.❤️

Jelbea profile image
Jelbea

Hi NewBloom Very interested in all the responses to your post. I had the Astra-Zeneca vaccine at the start and ended up very ill in hospital with a most dreadful headache and was watched for signs of a stroke. Fortunately I was already taking blood thinners because I think they saved my life. At that time I had not been diagnosed with ET.

However, I continued to take the boosters as per government advice. I then realised that the neuropathy in my feet had started when I had my first vaccination. Each succeeding jab (regardless of type) made my neuropathy worse. I spoke to my MPN specialist and she said "I cannot tell you what to do but I would suggest that you think very carefully about what is happening and then make your own decision".

I have always felt these vaccines were rolled out so quickly that obviously they were not tested adequately and although probably saving very many lives they have caused very many people to develop long covid and have also caused many deaths.

My daughter (in early fifties) developed severe cough after a covid booster and eventually was diagnosed with asthma which require steroids and ongoing treatment.

I think in the years to come there will be a much clearer picture of the outcome of all this.

I hope you are feeling back to good health again.

EPguy profile image
EPguy in reply toJelbea

Neuropathy can be a sign of serious adverse reaction. It was my first signal. So your Dr's caution makes sense.

But this is not specific to the Covid vaxes, others are known to have this rare reaction.

Jelbea profile image
Jelbea in reply toEPguy

Thanks for your response. I had various other vaccinations in the past including yearly flu jabs but never experienced anything like the Astra-Zeneca. I was lucky to survive but could do without the very unpleasant symptoms and pain which are obviously ongoing and cause a lot of sleep disruption. Good Wishes to you

EPguy profile image
EPguy in reply toJelbea

to Jelbea

Are you in the care of a neurologist? One first line med for neuro pain is gabapentin. It worked after my flu vax reaction although I'm now intolerant. The Dr should have good suggestions.

dogsandhorses profile image
dogsandhorses

I think it's so weird that the people in the UK are still going on about getting more and more Covid jabs. That's totally over in the US. Is the government still pushing that over there? It appears to be coercive, is it?

RoundTheWorld profile image
RoundTheWorld in reply todogsandhorses

I don’t think there’s coercion. The programmes are mainly to do with avoiding unmanageable winter strain on the NHS - apparently we’re predicted to have a higher than usual number of flu, Covid and RSV cases here this winter. Vaccines are being offered free to the more vulnerable if they want to take up the offer.

GardNerd profile image
GardNerd

I get the COVID vaccine every six months. I do not want COVID and definitely not long COVID. I also trust the science and studies that say the vaccines reduce the severity if you still get COVID and reduce the chances of having long COVID. I do space out the vaccines with my Besremi injections. I’m fine after the flu shot, but I do feel a little lousy for a day or two after the COVID shot. For me, it’s worth it.

NewBloom profile image
NewBloom

Hi all,

Thank you the these insights, they'll definitely give me something to ponder on. Some of you have been provided with fantastic information and I thank you for sharing them.

November I have my annual PV follow up with my consultant, I'm going to mention the vaccine and see what/if any advice is given.

I'm still recovering, had the jab Saturday morning, hopefully I'll be back to normal soon.

I wish you all the best and thank you for responding 🙂 x

Adlon57 profile image
Adlon57

Had such a serious reaction to first AZ vaccine always a bit wary to any of them at first, now almost oblivious to them, I have a unique system which has been proved numerous times, there is always one, pity it has to be me🙄 so I will stay out of this🤫

Minify profile image
Minify

Gosh, so many different opinions and anecdotal experiences! I’ve had 7 Moderna, never had a reaction except sore arm. Had Covid once, took antivirals and it wasn’t bad. I’ll continue with the jabs, probably annually.

Threelions profile image
Threelions

Hi

I had 5. I found I was increasingly ill, albeit for a short time, after each one.

I haven’t had one since. I know I should & appreciate the scientific benefits but feel that having had 5 I at least have some antibodies.

EPguy profile image
EPguy in reply toThreelions

to Threelions

You can see my posts above. The earlier vaxes may have diminishing benefits while the current monovalent ones since 2023 may overcome that. So it could be worth considering these. I can't get any more vaxes but would get these if I could.

Threelions profile image
Threelions

Hi & thanks so much for the reply. It plays on my mind somewhat & I know it’s worth having. With that in mind & your comments I guess I should just take the inevitable few days feeling rubbish in exchange for the protection & peace of mind👍

Plavers profile image
Plavers

it’s an easy question for me as I’m never plagued with side effects and I’m always hearing about the folk who are still getting struck down with Covid and not finding it as mild as others. Everything is a balancing act isn’t it? It weighing up the consequences of one and the side effects of the other. Keep a record whatever you do. Good luck

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