Should we be talking more about adverse vaccine reactions?

[flipdip]

Hello!

I'm hoping to just gauge some general opinions on whether people think there should be more in the media about people who have had an adverse reaction to the Covid vaccine.

I'll start by saying that I am one of these people - I had a very serious reaction to my first dose and almost lost my life. I was in hospital for five weeks and have now been home for just over two. I have a long recovery ahead of me and damage to my heart and liver.

I've felt like I shouldn't tell people why I was ill, or what made me so poorly and I feel like this secrecy about adverse reactions is being enhanced by the lack of coverage. Obviously we want and need as many people as possible to have the vaccine, I fully support this, and reactions like mine are so incredibly rare (at the last official Govt count just 6 people had the same condition as me). But I can't help wondering if the media should be showing a more balanced picture so that those getting the vaccine are well-informed and know what to look out for if they did have a reaction - and not just the signs of blood clots which has been discussed.

It's a dodgy topic perhaps to raise as I don't want to get into a debate on having the vaccine or not - just wondering if people think we should talk more about when it goes wrong?

Thank you!

For a vaccine to make someone so poorly and to kill people it should be stopped in my opinion

Thing is these vaccines side effects are magnified intensely because we’re giving it to huge numbers of people in a short time frame so some perspective is needed. I don’t think there’s a vaccine or medicine in existence that doesn’t cause serious issues for small percentages of some people.

The risk profile for ibuprofen makes uncomfortable reading if you start looking into it. Many gastroenterologists and nephrologists won’t take it themselves because it’s implicated regularly and randomly in medical emergencies and we sell that over the counter.

I had my second AZ on Monday.
Before I had it they asked memany more questions about my medical history with regards to thrombosis and blood clots, as well asgoing through what could e reasonably expected side effects that should subside witin 24 hours, and what I should be alert to andlook out forthat might be abnormal.
For the first vaccine, the medical questions were mostly allergy related and I was just given the leaflet about side effects.

@Cornettoninja i had a reaction to ibuprofen gel last week after using it on a strained shoulder. Yet im fine with the pill version. The reaction i got was peeling skin and the pharmacist told me to stop using it. I switched to Voltarol which i seem to be okay with.

@Grimbelina

I am pro-vaccine... but also one of the people who has been very unwell for weeks post-vaccine. I think part of the problem is is that the yellow card system is not really fit for purpose, and many other people including GP's etc. are very reluctant to blame vaccines which discourages people further from reporting themselves.

I made the right decision to have my vaccine but was very unlucky. I wish we were looking in more detail at those people who have been made ill by them so that we could hopefully better identify those at risk of issues.

This doesn't seem to be happening, which actually encourages anti-vaxxers in my opinion.

Yes I agree. I am sorry that you and the Op have both been affected so badly.

@MercyBooth see I understood gel was probably one of the safer ways to take ibuprofen. Ibuprofen is my preferred painkiller for joint/nerve issues and a gastro dr I used to work for used to (half-jokingly) tell me he’d keep me a seat warm in endoscopy for when I came in with a gastric bleed! There are things you can do to mitigate the harmful effects though, never take it on an empty stomach and if you’re using it frequently ask your GP about PPI’s (or to get to the bottom of the problem). I think you can take over the counter ranitidine for stomach protection too but I’d check that with a pharmacist.

ranitidine has been banned due to a cancer risk.

@MercyBooth

ranitidine has been banned due to a cancer risk.

Well there you go - the constantly changing world of pharmacology!

Yes we should talk about this. Any discussion is just shut down (on here at least) with insults being thrown. It is not unreasonable to have concerns and to be able to debate those in a mature fashion.

[quote MercyBooth]@Cornettoninja i had a reaction to ibuprofen gel last week after using it on a strained shoulder. Yet im fine with the pill version. The reaction i got was peeling skin and the pharmacist told me to stop using it. I switched to Voltarol which i seem to be okay with.[/quote]
I'd imagine it wasn't the Ibruprofen its self but an active ingredient in the make up of the gel base.

@loulouljh

Yes we should talk about this. Any discussion is just shut down (on here at least) with insults being thrown. It is not unreasonable to have concerns and to be able to debate those in a mature fashion.

Why does it need discussing? I take azathioprine which has a risk of cancer, including skin cancer and lymphoma. My choice whether to take it or not but I've never discussed these risks with anyone, including my prescribing doctor. It's just there in black and white on the medication packet information paper that lists all the adverse risks. I read it and chose to take it. I imagine many people on the same medication may not have even read it. All medications have side effects. It doesn't need a debate. You just need to be aware and then make the choice regarding risks versus benefits. Adverse sides effects are just a black and white matter of fact of all medications.

I agree, @User72642. All medicine is risk-benefit. In fact the covid vaccine is less risky than many standard meds. I appreciate that doesnt help you, though, op.

I agree, OP. I find the rhetoric around the vaccines quite scary. The 'roll up your sleeve and be grateful' thing. For people in their 20s, 30s and even 40s, the risk from Covid is teeny tiny. It's not ungrateful to question whether the vaccine is necessary or safe enough.

I've been called an anti-vaxxer, despite having all my vaccines, kids having all their vaccines, because I'm not sure if I should take a second dose of AZ when it's now banned in my age group. These things should be discussed.

I honestly think people are in such a panic about wanting their 'lives back' that they're scared that if we don't rush full tilt to get a vaccine we'll somehow bugger up their plans.

It doesn't need a debate. You just need to be aware and then make the choice regarding risks versus benefits. Adverse sides effects are just a black and white matter of fact of all medications.

But the point is that because these are new vaccines (and in the case of the MRNA ones, new technology), this 'black and white matter of fact' data doesn't exist. The data is coming from us. I was given AZ and it's now considered not safe for my age group. When I had it, they said there was probably no link to blood clots and it was just the EU having a sulk. Now they say it's not safe for someone my age. BUT they say I should get my second shot as that's fine, no evidence blah blah. But yet the evidence is appearing. Each week a few more people suffer a blood clot after their second dose. The scientists still aren't sure why. In other countries, people my age are not allowed to get a second dose of AZ. So what is it I should be 'aware' of? Do I trust that the UK have got it right when they got it completely wrong before? Do I trust the majority of other countries, that are not allowing people my age to have second doses of AZ? It really isn't as simple as the hugely tried and tested side effects list on a medicine packet.

I made the right decision to have my vaccine but was very unlucky.

There seem to be a huge number of people who feel they've been unlucky - both on this thread, others and in real life.

I don't believe those who've had terrible reactions to this vaccine are as unusual as they are being led to believe - and in answer to your question OP - yes this does need to be openly talked about.

Why does it need discussing?

Because at the moment if you are cautious and careful enough to question the vaccine you're made to feel like a murderer.

There are too many people who think questioning and considering is a crime.

Yep people really do need to talk openly and without bias about all vaccine risks. Also compare them fairly and weigh them up against the risk of covid.

However that actually never happens. People seem to just fixate on one vaccine. Which frankly if you look at data from other countries makes no sense at all. Other vaccines have a higher fatality rate.

Mumsnet is a very odd place sometimes. I do wonder why people are so keen to push an agenda sometimes. However that be the way it is🤷‍♀️

@MercyBooth do you know why it caused the skin reaction? interesting as I use Ibuprofen gel regularly for a couple of painful conditions because I can’t take it orally due to it conflicting with other meds I’m on. I always believed the gel is pretty much ‘harmless’, but it just shows that literally anything we put in or ON our bodies can have a bad effect!

OP I’m sorry for what happened and I hope you make a fast recovery. I honestly don’t know what to think re vaccines, my head is all over the place with them. As a poster earlier said, I’m equally as scared of covid and the vaccines, which is probably highly irrational.

@TheSilence i have no idea. I also cant use or take penicillin, co codamol ( this drug causes intense pain all over my back and torso) bananas (which do the same) Ralgex which causes red burns and now ibuprofen gel which causes peeling. Im a right awkward cow.

We have had so much shit chucked at us in the last year that IMO its perfectly rational to be scared of both Covid and the vaccines

@scrambledcustard

yes i think so too. Im fine with the pill version which im glad of because paracetamol dosnt touch my period pain.

@flipdip
it must have been very frightening. Im sorry about the damage to your heart and liver

And i was denied the Pill in my 20s due to the blood clot risk.

Flipdip
I am so sorry to hear you were so ill after the vaccine.
It sounds terrifying and it sounds like you’ve thought long and hard about posting about how ill you’ve been and I can understand your frustration that there isn’t more discussion and debate about what happens when people get such terrible side effects as you’ve experienced.

I too know of people whose lives have been severely altered since receiving the vaccines.
I Really hope you go on to make a full recovery and I hope the medics are doing everything they can to assist you with is.
You really do have my very best of wishes end anyone else who is suffering.

@LovelyLadyLily

It doesn't need a debate. You just need to be aware and then make the choice regarding risks versus benefits. Adverse sides effects are just a black and white matter of fact of all medications.

But the point is that because these are new vaccines (and in the case of the MRNA ones, new technology), this 'black and white matter of fact' data doesn't exist. The data is coming from us. I was given AZ and it's now considered not safe for my age group. When I had it, they said there was probably no link to blood clots and it was just the EU having a sulk. Now they say it's not safe for someone my age. BUT they say I should get my second shot as that's fine, no evidence blah blah. But yet the evidence is appearing. Each week a few more people suffer a blood clot after their second dose. The scientists still aren't sure why. In other countries, people my age are not allowed to get a second dose of AZ. So what is it I should be 'aware' of? Do I trust that the UK have got it right when they got it completely wrong before? Do I trust the majority of other countries, that are not allowing people my age to have second doses of AZ? It really isn't as simple as the hugely tried and tested side effects list on a medicine packet.

But the point is that because these are new vaccines (and in the case of the MRNA ones, new technology), this 'black and white matter of fact' data doesn't exist. The data is coming from us. I was given AZ and it's now considered not safe for my age group. When I had it, they said there was probably no link to blood clots and it was just the EU having a sulk. Now they say it's not safe for someone my age. BUT they say I should get my second shot as that's fine, no evidence blah blah. But yet the evidence is appearing. Each week a few more people suffer a blood clot after their second dose. The scientists still aren't sure why. In other countries, people my age are not allowed to get a second dose of AZ. So what is it I should be 'aware' of? Do I trust that the UK have got it right when they got it completely wrong before? Do I trust the majority of other countries, that are not allowing people my age to have second doses of AZ? It really isn't as simple as the hugely tried and tested side effects list on a medicine packet.

These are not new vaccines at all. Preclinical work for mRNA vaccines dates back 30 years. AZ is approved for your age, it's just that on balance, with the risks of COVID being so low at the moment, the risk of a blood clot may outweigh your risks of COVID. That wouldn't have been the case in January - they wouldn't have made this decision then. And they could very well revoke this decision with the rising cases of the Indian variant.

What it is you should be aware of, is that there is a very rare risk of blood clots, along with a number of other possible common and I'm sure rare side effects. It really is that simple as a medicine leaflet with tried and tested side effects. Do you ever take any other medication? Have you ever? If so have you trawled through the list of side effects and said "no thanks" because there was a 1 in 100,000 person risk of an adverse event that sounded scary? You're scared of a tiny risk and focusing on that, but you don't focus on all the other more risky things in your life like being in a car.

You are aware of the blood clot risk. Just as I am aware of the cancer risk of my medication. I choose to take my medication. I don't go on and on saying but what if I eventually get cancer? Because I know the benefits of my medication and I choose to take that risk. It sounds like you are picking and choosing what risks you want to take based purely on emotion. Tell me you have never taken another medication ever in your life.

[quote MercyBooth]@TheSilence i have no idea. I also cant use or take penicillin, co codamol ( this drug causes intense pain all over my back and torso) bananas (which do the same) Ralgex which causes red burns and now ibuprofen gel which causes peeling. Im a right awkward cow.

We have had so much shit chucked at us in the last year that IMO its perfectly rational to be scared of both Covid and the vaccines

@scrambledcustard

yes i think so too. Im fine with the pill version which im glad of because paracetamol dosnt touch my period pain.

@flipdip
it must have been very frightening. Im sorry about the damage to your heart and liver [/quote]
@MercyBooth that must be so frustrating. Especially the bananas, it really does show that our bodies can be very awkward when they want to be!

Yes I think you’re right, it’s been a difficult year or so, I think it’s not too surprising that some of us are all over the place with our thoughts and emotions 💖

Yes we should talking about it as much as possible. I'm so sorry you've been so unwell and will continue to b unwell OP. That's awful.

I am utterly appalled at how people have been coerced into having the vaccine. Myself included and now parents are been berated for refusing to consider vaccinating their children. People have every right to make their decisions for themselves and others need to keep their bloody opinions to themselves. Whether or not someone has the vaccine or not is their own business and nobody else's particularly when it is abundantly clear that there are unsurprisingly issues with the vaccines.

@Cadburycup

FWIW, I'll still have my second dose. But now I know what I'm getting myself in for, I'm booking two days off work and stocking up on paracetamol.

It's possible you may be pleasantly surprised. I had a pretty rough reaction to my first AZ, hit by flu-like feeling and unable to get out of bed for 36 hours, headache that persisted longer, auto-immune condition flare-up and an arm so sore I couldn't even dress or undress, far worse than after any intra-muscular injection ever before.

Had my second last week, was not looking forward to it at all, like you I planned time off work, took two paracetamol beforehand etc...I had a mildly painful arm for a couple of days, similar to when I have the annual flu jab, and that literally has been it.

@haymade it’s much easier said that done. My husband keeps ‘reminding’ me everyday- I’ve booked my appointment but I’m not sure I’m ready to get this thing injected into me yet. I will have to succumb to it eventually-