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!

Yes it should definitely be spoken about. I'm sorry you've been so poorly.

@flipdip yes absolutely should be spoken about. I’m really concerned about the lack of debate on this subject. There will be someone pretty soon to call you an anti vaxxer.

That seems to be the norm- you take the vaccine or you are an anti vaxxer- absolutely nothing in between.

I’m 40 and I’m equally terrier of Covid and the vaccine.

Could I ask which vaccine was given?

You will be beaten with a anti vaxer stick on here OP.

Most of the people I know who are choosing not to have the vaccine, are people who have had the first dose but declining the second. Precisely because they have felt so unwell after their first dose. I know people who have been really unwell for four or more weeks after having it.

I just wish people could openly say 'I felt like fucking death after it' without being accused of scaremongering. Then people would go into having it with their eyes open.

I felt awful after mine for about two weeks. I didn't broadcast this, some people asked and I was honest with them. I was called dramatic, over reacting and scaremongering. Yeh, lying in bed shivering with a temperature paracetamol won't bring down for two days is scaremongering.

I think it is being quite widely talked about - ime many people are aware of/worried about vaccine side effects - more than I've ever heard about any other medication.

What I'd like is to know which information I can trust (as a non-scientist). Stats can be manipulated, polititians are political, and abecdotes are scary, but without wider context it's difficult to assess how relevant they are.

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.

What are you saying, don't take the vaccine ?.

I'm so sorry for you 😞 and glad you're still here to share your experience which you absolutely should !!!

As mentioned it seems there's no in between.
I'm not anti vaccinations- not at all I've had plenty, but I am also pro choice and my choice to wait and see how people react to TRAILS is my choice and right to do so..

Imagine pinning people down to take it-!we would be horrified but I feel like some people are metaphorically doing this when they bat away your concerns and questions about it and scream about how selfish people are

I mean just yesterday J&J had more coverage over their Talc and the health concerns over it and there damage it's caused
TALC! Never mind a trial a vaccine

If you lose your job or life insurance won't cover you-.... because you took part in a trail- it's your choice but I don't get why people don't see the real concerns here. I support anyone who has weighed up the odds and gone for it.
I also support those who have decided to wait or NOT do it.

Discussing it? Fine.
But it should be discussed alongside actual, scientific information and proper, well explained statistics.
Random anecdotal evidence from the tiny percentage of people who has had these side effects must be balanced out by the thousands (millions?) of other people who had no reaction at all.
I’m very sorry you were so ill but I can name you 50 other people I know personally (myself included) who had no side effects at all.
Half a story is not much help to anyone.

Thank you for the thoughtful comments so far.

Importantly, I wanted to add that I wouldn't want discussion of adverse reactions to stop people getting the vaccine but just to make them more informed of what could happen and what to look out for.

Also, perhaps talk of serious reactions would help to put some perspective over the more normal reactions of high temperature, sore arm, fatigue etc. Not diminishing how bad that can make someone feel but if there was more of a benchmark of how bad it could be that could help?

A little more about what happened to me - I am 36 and had the AZ vaccine as part of priority group 6 as I am a parent carer. It was about a week later that they determined AZ wouldn't be given to under 40s. I developed a condition called secondary HLH, where basically my immune system took the vaccine antibodies and went crazy with them - destroying my immune system and attacking my organs. As I say, super rare!

I am still discussing with my doctors about if it's possible for me to have the second vaccine while staying safe. I understand that my best Covid protection comes from having both but we just need to work out how that can be done.

Every medication has risks. It's low risk.
Sorry it happened to you but it's saving a hell of
a lot of lives.

Covid also causes secondary HLH doesn't it? I'd thought I'd read about that being the cause of some serious cases/deaths.

Covid also causes secondary HLH doesn't it?

In those their 30s with no underlying health issues? (genuinely interested, not trying to be goady)

Hi OP sounds like you've had a tough time! Sorry you were so poorly.

I have a relative whose legs have swollen up and are in a bad way. Consultants have no idea what's caused it and is really reluctant to say it related to the vaccine but it happened within days.

@Smartiepants79

Discussing it? Fine. But it should be discussed alongside actual, scientific information and proper, well explained statistics. Random anecdotal evidence from the tiny percentage of people who has had these side effects must be balanced out by the thousands (millions?) of other people who had no reaction at all. I’m very sorry you were so ill but I can name you 50 other people I know personally (myself included) who had no side effects at all. Half a story is not much help to anyone.

This

@NotImpossible I’m not sure if it’s widely spoken about in the right light- if that makes sense!

It fast becomes a bun fight of sorts and the name calling starts. This u believe is the reason why the conversation around adverse reactions seems to be driven by anecdotal facts.

Take me for Instance- I’m being coerced into this but she I raise my question these are the tags I’ve received
Anti vaxxer
Mental health issues
Not doing your moral duty
Selfish behaviour
Braving like a child
Do you want another lockdown?

To name a few...

@Farmer5505

Covid also causes secondary HLH doesn't it?

In those their 30s with no underlying health issues? (genuinely interested, not trying to be goady)

Of course, why not? It’s an extreme immune response. It’s happened with COVID. Age or background health doesn’t factor.

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.

Calpol before and after isn't it?

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.

Sorry you have both been unwell and hope you are better soon

paddyk that remark is exactly what gets people like me down.

I have been mostly in bed for 8 weeks post-vaccine, have new auto-immune issues and am very ill. I may not recover. It is a struggle to take care of my children. My life is very, very difficult right now.

Farmer5505 thank you for your kind words.

It’s a tricky one. I absolutely think there should be media coverage as to what to look out for and what to do if you spot a reaction but similarly if there are 6 such reactions out of millions then I think the coverage (minimal as it is) is proportionate. The issue is when does it become statistically significant - which the clotting problem seems to be - I would have used that as an in to talk about other rare complications that are happening across the board and what to look out for. I certainly don’t think you should feel bad about discussing your own reactions to it though! And I’m very sorry that you were one of the rare cases as it’s all well and good saying the risks are low but no comfort when you are the one feeling the after effects. You are a special kind of person who can still see the benefits despite suffering the bad along with it! Perhaps Karma will balance it out if you put the lottery on? My fingers are crossed you get a big win!

Maureen, you sound like a bit of a twat. And a bully.

'So that I am satisfied she has done the

right thing.

Who put you in charge of other people.