Hi All I don't know who I was posting to on this subject, so I will put it out there for all to see, it may be helpful to some.
On my 4th and 5th Phiser, I had 120 Pulse rate, lasting 14 hours, severe headaches, nauseous and retching. My GP told me to take the full dose of paracetamol until things cleared.
With my 6th Vaccine it was complicated by me having a 5 week, Virus with incessant coughs. My Haematologist told me that the infection had cleared, but there was Inflammatory issues which lasted longer.
Seemingly this is normal, and he said that as long as I had no Temperature, I should go ahead and take the vaccine. Before the nurse administered it, she ensured that my temperature was ok.
I received the Vaccine at 11.30am, and had no reaction until 6 pm, There then followed the worst vaccine side effects for me personally.
My pulse rate shot up to 120, I also had the severest headache I have ever experienced. I never slept one wink, I was nauseous and a little sick to my stomach. The 120 Pulse rate reduced after 15 hours, but is still not normal. I force myself to eat and drink lots of fluid.
It is now 4.20pm on the 26th May, and I am told that different people have different reactions, and times scale's .
The 8 paracetamol had absolutely no effect, so I phoned my GP Nurse and she said it was ok to take Tramadol, and Zoplicone' for sleep. At the moment I am committed to never having another Covid Vaccine, but I probably will, as my haemo man tells me it's a 'Must Do' for us CLL'ers.
All the best Ron
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I had a pretty intense reaction to my 4th Pfizer shot. Headaches started at the same day and lasted for 10 days. I started treatment soon after and my oncologist wanted me to wait for 6 months. I decided to wait for the bivalent booster and changed to Moderna. No issues whatsoever. Hope you will improve soon
Your experience with the Moderna Bivalent is so different to mine. I, always had the pfizer vacccine (the past 5 times), no side effects. This time I had the Moderna Bivalent and unfortunately had chills 6 hours after and after that hives within 7 days of shot, had to be on a antihistamine for7 days and severe muscle aches for 2 weeks. Which leads me to question what vaccine I should have next time. Yes, we are all so different, that is why it is so important to share our experiences.
Thanks Splash24, what are the 'Compounding Effects' you mention. We hear in the Media that there have been very 'Negative Effects' World Wide from taking Phiser.
From what I gather, the Positive far outweigh the negatives, I suppose it all depends on each individual CLL'ers medical condition at the time of taking the Vaccine.
I would be interested to see what 'Unsuppresed' 'Data' shows.
I suspect to your point it's individual, time will tell if there are any long term negatives to multi shots, I don't have the answer, I had a son & law who had a horrible reaction to his second, the first shot seemed ok.
The positive outweigh the negative on a populational level. Not necessarily on individual level. Some people with terrible reactions could attest to that.
Thanks LeoPa, what I was trying to say inarticulately perhaps, is of course I accept there is a risk of devastating reactions or worse, for many who take the Vaccines
However, they are a small group compared to the millions who have survived or benefited as a result of taking the Vaccines.
I suppose it's a gamble for some, but for me personally, the figures, make it, a 'No Brainer'..
Splash24, I came to the same conclusion. I decided to switch to a 1 year interval between dosages. I had my last shot last November, I plan to skip the 6 month booster and wait until the next version of the bivalent formula is available next fall.
"At present, given the nascent nature of COVID-19 vaccines and evolving data on their adverse effects, it is imperative to emphasize that no causality can be established from this review."
Or you could have referred to the latest update, from June 2022, with my emphasis;
Ocular Complications after COVID-19 Vaccination, Vaccine Adverse Event Reporting System
Overall, the benefits of COVID-19 vaccination both at an individual and a population level far outweigh the risks of ocular complications. Eye care professionals and other clinicians should be aware of these rare but possible ocular adverse effects after COVID-19 vaccination, especially those that are sight-threatening in nature. Also, patients who have a history of allergic/autoimmune reactions against medications like antimicrobials should be carefully and closely monitored post vaccination. Prospective research will be needed to establish any causal relationship between COVID-19 mRNA, viral vector vaccines and ocular complications, particularly as new strains of the virus emerge, and new vaccines are being developed as booster shots to combat them. Future vaccine safety studies by vaccine manufacturers should consider the ocular adverse events in clarifying the vaccine’s safety profile.
Thank, you Aussie Neil, I have always found it difficult to get into the Technical stuff in relation to my CLL. All I can do, is read everything and take from it what, I can assimilate. There is usually something I can grasp that reassures or informs me, so thanks again for your interest. All the best. Ron
Yes! I'm looking forward to the result of that prospective research in the future. Especially in terms of getting 10 boosters or more 😁. I'm just afraid I might not live long enough to see such research conducted. And till it's available, caution is warranted. I'm seriously amazed by how blase some of the MDs are about recommending their patients to go for the umpteenth booster. Especially immune compromised patients who formed no antibodies to previous vaccines because their immune system is broken. What's the risk reward ratio here? Just the way I disliked antivaxxer MDs I dislike those who dish out the 10th booster without thinking twice. But that is just me.
I agree LeoPa, I am also concerned about the way our Covid related Vaccines are distributed.
I never trust 'Big Pharma' as there is usually, 'Money' and Vested interest involved.
One can only go the research we as CLL'ers do for ourselves, along with the medical advice given by our GP's and Haemtologists.
We may find in ten years or so that they got it terrible wrong, resulting in all sorts of complications for those who took the Vaccine's.
As I said earlier, it is in many ways a bit of a 'Gamble' and individually we have to accept that, and make a decision for ourselves which we think is right at the time, f
Other than that, LeoPa, we are indeed, In the 'Lap of the God's'.
Here are some basic COVID-19 facts as I understand them.
Each SARS-CoV-2 virus is enveloped with 30 to 40 spikes. If the virus get past our first defences (mask if any, our airway defences such as our cillia propelled mucus, macrophages, neutrophils), msdmanuals.com/en-au/home/l... then it's up to our adaptive immune system to protect us. If we have functional antibody protection from prior vaccination or infection and the virus didn't mutate, IgA and IgG would lock onto the spike proteins, neutralising the virus and a macrophage would be signalled to engulf and destroy it. End of story.
If a virus eludes destruction and a spike protein locks onto a body cell, injecting the viral RNA payload into our cell cytoplasm, that cell will be churning out SARS-CoV-2 viruses until hopefully a T cell, trained to recognise the signature of the taken over cell by prior vaccination or infection, kills the cell. Again, eventually, end of story. Meanwhile our body is being flooded with more and more Envelope, Membrane, Nucleocapsid, and Spike structural proteins from the multiplying virus, as it infects other body cells which also release billions of viruses into our body. Unlike vaccinations, where only enough spike protein is provided to effectively naturally and far more safely stimulate our immune systems to provide us with antibody and cellular immunity, the amount of viral protein production isn't so constrained, hence long COVID. Of note, vaccination reduces the risk of long COVID. (see attached Kaplan Meier curves)
Unfortunately, because SARS-COV-2 is becoming endemic, with recent variants able to elude much of our protective defence, it's not always possible for even healthy people to avoid reinfection, though they usually gain sufficient protection from prior vaccinations or infections to avoid serious illness. Given Studies have shown that SARS-CoV-2 infection-induced immunity may last at least 5–6 months after infection13,14, while some small case studies have shown that repeat infections could occur even within 1–3 months after first infection15,16,17."nature.com/articles/s41598-... it seems to me that if we want to have real life social involvement, it's a choice between risking regular infections that are likely to be serious, even fatal, or reduce potentially serious outcomes by having boosters every so often. Currently, until Evusheld V2 is hopefully approved for use later this year, we are reliant on Paxlovid antiviral treatment AFTER we test positive for infection. Hence we can't avoid the greater exposure to Spike, Envelope, Membrane and Nucleocapsid structural proteins from the SARS-COV-2 virus until we hopefully qualify for access to artificial monoclonal antibody protection, well - for as long as it works against newer variants. Meanwhile, while not perfect, vaccine boosters appear to be the safer choice unless we want to live like hermits. For every possible side effect from a COVID-19 vaccination, it's more serious, possibly fatally so, from an infection.
Neil
Other references
Humoral and cellular immunogenicity of SARS-CoV-2 vaccines in chronic lymphocytic leukemia: a prospective cohort study
Yes, that is why I mentioned the risk reward ratio. If this is becoming endemic and can avoid most of the antibodies even from prior infections and boosters then why keep boosting? Boosters are always months behind the latest variants. One can be boosted plenty times and still catch the virus. Many do, which we can see from posts here too. So the best and safest way forward is to minimize unnecessary social contact and to wear a mask when close to people we are not regularly with, I think. And then if we still catch the virus there is the antiviral pills or tablets too fall back on.
There is the advantage from boosters of maintaining T cell immunity (which around 80% of us presumably are achieving) and hopefully reducing the risk of long covid. Even with the later variants, keeping up with recommendations is reducing the risk of serious illness.
What about T cell exhaustion? Are there actually any studies that looked at how long T cell protection lasts after a vaccine and how often should we boost based on this information?
Thanks, AussieNeil, I'm afraid my old brain cannot take in the Science/ Reports and Papers relating to my CLL. I accept that there will be many on this site who can understand and assimilate such information. I'm not one of them unfortunately.
I do appreciate that it must be difficult to translate all this very complex, and, well researched information, into readable form for those in my position.
If anyone knows where I could garner such information, I would be extremely grateful.
I am sitting here next to my friend who has had the Pfizer vaccination and had suffered terribly afterwards. She had an autoimmune response, cleared up by antibiotics. Then after Christmas at a party, where people had just had their booster, she came home, couldn’t walk, had terrible headaches etc and was again put on steroids. This time her reaction was most severe and she still has the autoimmune disease and other intense reactions. She has now developed large cell arteritis. She thinks she caught the effects of the other peoples boosters simply by breathing in their breath and being with them for 2 hours. She is not a well lady.
Marissa, it seems you have a very unlucky friend. The following paper and article indicate that the risk of giant cell arteritis is very rare following vaccination and there also appears to be a risk of developing it after a COVID-19 infection, also a rare occurrence.
With respect to her hypothesis of catching "the effects of the other peoples boosters simply by breathing in their breath and being with them for 2 hours", that seems most unlikely and is more likely coincidentally from another cause. That's because one of the criticisms of COVID-19 vaccinations is that they don't generate enough of a response in our respiratory system, hence the interest in nasal spray vaccination, for example abc.net.au/news/2021-07-16/...
Further, it takes about two weeks for antibodies from vaccinations to appear. That's after the spike protein from vaccination is moved to the germination centres in our armpit nodes, where B and T cells interact with the spike protein to hopefully produce B cell (antibody production and memory B cells) and T cell cellular immunity respectively.
Below are the relevant references for giant cell arteritis.
Neil
Risk of giant cell arteritis and polymyalgia rheumatica following COVID-19 vaccination: a global pharmacovigilance study
Overall, our study supports a potential safety signal for GCA and PMR with COVID-19 vaccines. Further data are needed to confirm this signal. Nevertheless, COVID-19 vaccine benefits dramatically outweigh this potential risk, which appears very rare relative to the billions of doses administered so far.
Large-Vessel Giant Cell Arteritis following COVID-19—What Can HLA Typing Reveal?
To sum up, we hypothesized that COVID-19 triggered the onset of LV-GCA in our patients. It may be possible that viral peptides, in the context of a specific HLA class II allele, are able to trigger the activation of antigen-specific (autoreactive) CD4+ T-cells, leading to autoimmune-mediated inflammation within the vessel wall. Further studies may clarify the exact mechanisms of the activation of SARS-Cov-2-triggered autoreactive T-cells.
I reacted, less severely than you to all 6. I queried whether 6th was necessary as my antibodies were as high as 3 weeks after 5th. He insisted it should be given which was last October. Howver, I had a small TIA Dercember 2022 and that seems to have triggered ataxia or similar which has reduced my quality of life severely so I have ignored 2 invites for a 7th. No final diagnosis but one suggestion was my immune system fighting itself so seems silly to add to immune system when they aren't able to tell me what exactly is wrong.
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