Many people reporting long term side effects to jab? - LUPUS UK

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Many people reporting long term side effects to jab?

Neriah
Neriah

Having just written one post , I've been flicking through a number of others and am quite disturbed to find that there seem to be a lot of people who are having really bad long term reactions to the vaccines. I know there is the Yellow Card system on which to report, but really is anyone ( though I'm not sure who I mean by anyone) taking any notice of this? Are other autoimmune communities also affected? I'm not disputing the need for the vaccine btw but am wondering if enough care is being taken to address the vulnerabilities of our particular community.

33 Replies

I had my vaccine 3 weeks 2 days ago. I am still really dizzy and nauseous. I also still have a lump in my arm. I don't feel safe to drive and am lying down all day. Its so frustrating and it had to be the vaccine

Hi Jodipat, i hope your feeling better now. Would you mind telling us which vaccine you use? Thanks

Fennella02
Fennella02 in reply to Jodipat77

Interesting. I am dizzy and intermittently nauseous but it wouldn't have occurred to me to blame my (Pfizer) vaccine 4 weeks ago. There are so many other things in my life that could just as easily be the cause.

I had the Astra Zeneca vaccine on 27 January and have had persistent shoulder and neck pain ever since. I have made a report to the Yellow Card system, but have not consulted my GP. However, regardless of this side effect, I will still go ahead with the second dose when invited.

I don't think "long term" can apply yet - as we haven't had these vaccines for long enough for anyone to have a long term reaction (which I would count in months and years rather than weeks). "Really bad" is also a value judgement (please don't shoot me down here - aching and fatigue are horrid, but surely preferable to dying from Covid).

I am not saying that the people who report unpleasant and lingering reactions are mistaken, and I am sure they are not making it up. But I do think we should all be careful about scaremongering when there is so much at stake here. I know people without autoimmune conditions who have also had unpleasant and lingering reactions to one or other covid vaccine. This is a virus that no one had any prior immunity to - and an aggressive immune reaction to the vaccine is probably a good thing (IMHO), showing that your body is fighting it.

SRiley
SRiley in reply to WinterSwimmer

I think it’s a bit unfair to say people are ‘scare mongering’ if they are honest about having issues with side effects. To be honest, I was so relieved when I read on this forum that other people had had similar reactions to me as I didn’t understand why everyone seemed to be fine and I wasn’t ! It prompted me to ring my rheumatologist and I was given a steroid injection to settle the symptoms.

I am so glad I’ve had the vaccine and I feel much safer. But I think it’s good to be honest about side effects, particularly amongst those of us who have autoimmune diseases. In the long term, using the yellow card system will help to ensure that there is data around the safest way for us to be vaccinated in future (as this will probably be an annual thing!).

WinterSwimmer
WinterSwimmer in reply to SRiley

I think the scaremongering is not that people are being honest. They should be honest - that is really important. But we need to be real about what "long term" means and also about what constitutes a "serious" side effect.

Personally, I would take some joint pain, brain fog and fatigue - even for a few months, if it meant not being hospitalised with kidney failure (I have class iv nephritis and low kidney function). Of course there is no guarantee that this would happen, but based on how my body reacts to any virus (let alone covid), I don't really want to take the risk. I would also hate people to choose not to get vaccinated based on 'serious' or 'long term' side effects that are neither of those things. I am not trying to negate people's experience but just trying to introduce a measure of balance.

I feel much safer for having had the vaccine too.

Neriah
Neriah in reply to WinterSwimmer

Hi WinterSwimmer, I hope I'm not being scaremongering; that was certainly not my intention. Take out the 'really' from 'really bad' if you like. But I am concerned. I don't know about others, but I vaguely expected to have a couple of days of discomfort and then to be back to my previous level of lupie normal. So far this has not proved to be the case. I would put myself on the lower end of 'bad reaction' btw, but have seen responses to previous posts I have written which would indicate that others are suffering much worse.

The real question for me is to what extent all this is this being investigated, by whom and when are we likely to see the results of those investigations? Marypw indicates that consumer reports don't carry much weight. If that is so, and I have no reason to doubt her, then, it becomes all the more important as KayHimm to report side effects to GPs and Rheumatologists and to keep badgering them if necessary

WinterSwimmer
WinterSwimmer in reply to Neriah

I think a study has just begun in Cambridge with immune-compromised people, Neriah.

How are you managing your symptoms? what has the GP said if anything? I'm sorry it is horrid - the only positive thing I can think of to say is that a reaction seems to be a sign that the vaccine is working by triggering your immune system. By contrast I had minimal to no side effects and am worried that it means I won't be protected (this is probably a ridiculous worry - but still).

I have Oxford 4 weeks ago and still feel fatigued

Nor42
Nor42 in reply to kingsnorth

I to have had the Astra Zeneca vaccine and have a real fatigue and stiffness in my limbs like a flare up but will still get the 2nd vaccine to make sure I’m covered.

I had the AZ vaccine on 21st February and was fine until about 4 days afterwards, when I had a flare, aching muscles, stiff joints, fatigue and just not feeling well, which have still not improved. I submitted a yellow card, but having worked in drug safety, I know the consumer reports don't really count for much.

The thing to watch is how we feel after the second dose. A similar reaction then would be fairly conclusive.

That is a really important point. It does seem like more lupus patients are reacting to these vaccines than to others. Of course, that could be people in general are reacting much more to these vaccines than others like for the flu.

When the Pfizer and Moderna vaccines came out, I remember reading about the concerns. Lupus was mentioned as a concern in terms of causing disease flare but thought it likely safe.

We should keep in mind that vaccines always pose some risk to those with autoimmune disease. That is what my rheumatologist told me about the new shingles vaccine. But the benefits have to outweigh risks.

I think it is vital that information get to the proper people. In addition to filling out the post-vaccine card, people with any symptoms past the expected few days and any clear lupus symptoms should report those to GPs or their rheumatologist.

In a few weeks I will have my second dose of the Pfizer vaccine. That is usually when the flu-like symptoms appear. I will definitely report any long term symptoms to the doctor. There may be studies going on now. But I know doctors will want to know this information. Clinics will definitely notice if lupus patients call with frequency over vaccine side-effects.

Thanks for bringing this to our attention.

I agree there @WinterSwimmer that the side effects are going to be worth the risk of Covid. But it is good to speak up so doctors aware.

K

LupusKaren
LupusKaren in reply to KayHimm

Great post KayHimm. I posted in Neriah's long term effect post earlier on.

My GP has been excellent, he and his team are on duty at our main vaccination centre, and made a point of asking me to seek him out after my vaccine and he made me stay behind for half an hour. He said I absolutely must call him with any issues, no matter how small, as he, as a practitioner, needs to know of issues, so your point of speaking up is 100% valid, if we don't, then how can the profession help in the longer term with development of these wonderful vaccines.

Paprika60
Paprika60 in reply to LupusKaren

You are so LUCKY to have such a caring GP! Wow! If only mine were half as caring. So good to hear that there are still such caring GP around.

Hi Neriah, I had the Astra Zeneca nearly 4 weeks ago and I’m still not feeling right. I had the initial reaction of a fever, nausea, migraine and severe joint pain, which I had for about 72hours. However, since then I have just not felt right, I have been so fatigued (more than usual), joint pain has been excruciating and I’ve just had a feeling of a general malaise. I have filled in a yellow card and I have posted on my specific Vasculitis site to see if anyone else has a reaction. I am more interested in knowing if people like us should have antibody tests before we venture out, how will we be monitored? Best wishes

I can understand how you would feel sacrificed for herd immunity. I think the bigger issue is that you need the protection the most. Dr. Fauci, one of our experts, answered a similar question the other night to a concerned immunosuppressed patient the other day. He told him even he had to get the vaccine because he was in the vulnerable category we are trying to prevent from getting the virus the most.

You may not die if you don’t get the vaccine even if you get Covid. It is always a question of risk. And if too many people refuse the vaccine we cannot overcome this pandemic. The virus will keep mutating and the economic losses will be huge.

Your grandchildren are not in a risk group but they pass it on to people who are. That is why it is so hard to only protect the vulnerable.

Who knows? Maybe they won’t vaccinate children who have had Covid.

If you have multiple autoimmune diseases, your doctors want you vaccinated to make sure you don’t get sick. It must be hard to have to isolate for so long too. The vaccine will give you a bit more freedom.

Please don’t use your grandchildren as examples of what Covid does. Fortunately, children do well. Their grandparents and those with chronic illnesses are not doing as well.

K

Hi Michelle, thanks for your response. I'm not understanding very well today and would help if you could clarify.

If you have lupus - it is my understanding that you are one of the vulnerable who need to be immunised. What is it that is making you feel neglected?

And why do you feel sacrificed? Getting the vast majority of the population immunised will protect you, even if you choose not to have the vaccine. Is your point about being worried about a reaction from having it? I'm sorry for being stupid but really not understanding your points here.

As for children - I believe that my own childhood vaccines protected me from illnesses that might have killed me or left me disabled, such as polio and measles, tetanus, whooping cough and diptheria. I believe that I protected my children from these and other illnesses by having them vaccinated. Some children have died or been very ill as a result of covid, and there is a piece in today's Guardian about long-covid in children. Why wouldn't we want to protect them?

My response to Neriah was just to say we can't YET say that these vaccine have long term or serious side effects because they haven't been around long enough. I was in no way trying to negate others' experience of side effects that are both unpleasant and have gone on a bit longer than usual.

I had the Oxford jag on Sunday afternoon by the early hours of Monday morning I was ill. Shaking and shivering, freezing cold but temperature was 39.8. Felt nauseous and was then very sick with a thumping sore head and nosebleed. This lasted for a good few hours and I started to feel a little better by Monday afternoon although was still nauseous with a sore head and couldn’t face food. Felt much the same yesterday but my joints started to get sore and felt as if a flare was starting. Today I feel lousy again, couldn’t sleep much last night as very cold but woke drenched in sweat and I feel very trembly and shakey and weak and as if I’ve got a weight on me. I know the jag is a necessary evil but I can’t help worry about the way I’m feeling now and scared it gets worse again.

happytulip
happytulip in reply to Froggie70

Oh Froggie, that's awful. I hope you feel better soon. I hope everyone does x

Froggie70
Froggie70 in reply to happytulip

Hi there. Thanks Happy. Starting to feel better now🤗🤗

Hi Neriah, I had the AZ vaccine just over 2 weeks ago, the side effects were really severe for a week after, although not as severe now, I’m still experiencing some symptoms of joint pain, rash and infections ☹️ as well as feeling very lethargic, I have absolutely no energy. I’ve been prescribed antibiotics and pain relief and have taken steroids for the joint issues. I did consult my GP re these side effects although I have no way of contacting my rheumatologist 😞 There is a help line with the Rheumy Nurse but unfortunately the outcome there is to phone GP! I must stress that although I have experienced these symptoms, I am glad I’ve had my vaccine, in my opinion, it’s the only way out of this nightmare we are all in at the moment! Stay strong everyone and although sometimes you may not feel like smiling, please do 🥰🥰🥰 Ps. Can I ask where I would complete a yellow card? No one has told me about this 🤔

baba
baba in reply to jopo280886

Re yellow card scheme , information is on the "patient information leaflet" (packet insert), supplied with any prescription drugs in the UK.

jopo280886
jopo280886 in reply to baba

Aww Thanks Baba 👍🏻 Take care 🥰

It is looking positive that the vaccines are holding up against the variants but not with the same efficacy. Lots of concern around the world. The solution according to the experts is vaccination. And they site the UK’s recent success.

Keep fingers crossed.

Xk

Thanks Michelle 👍🏻

I see where you are coming from. I think it's because there is still so much unknown about this virus and it's got a R knot of 3. So I guess the virologists want to be ultra cautious with a highly contagious and new virus that can take hole of some extremely quickly. Those are my thoughts off the top of my head.

I'd just like to add that it's not just AI patients who are having reactions. My mum is as tough as old boots and she had her vaccine 6 weeks ago. She still feels dreadful after having it. Her symptoms are fatigue, chills, body aches and muscular pains and some mild confusion/forgetfulness. My Dad had the same jab (AZ) on the same day and is fine. It's really made her quite poorly.. Equally she says that she would rather have that than covid and fully intends to get her second jab.

I hope everyone feels better soon

misty14
misty14 in reply to happytulip

Hi ht, so sorry your mum has been so poorly after her jab. I do hope she feels better soon as it's miserable when it lasts like this. Do hope you improve soon too. Reading thru a lot of these posts has made me feel much less alone.

It's so easy for us to be made to feel weird having these reactions when we're not expected to.

All the very best to you both. Xx

Neriah
Neriah in reply to happytulip

Yes happy tulip, my husband, aged 78, diabetic but not a lupie, is displaying similar symptoms to your mother, some 5 or so weeks after the vaccination

Froggie70
Froggie70 in reply to happytulip

Hello again. I’m sorry to hear your mum had a hard time, I understand the bit about confusion, I didn’t really realise it until I was thinking back and I can’t actually remember Monday and apparently the phone call I made to my boss to say I wouldn’t be working (from home) was a bit ‘unusual’. I hate to think what I said😉. I hope your mum feels better soon. 🤗🥰

Neriah,

thanks for putting this out again as I think it is very very important that it is known how immune compromised patients are reacting to the vaccine.

We all are very glad the vaccines have been created and the last thing we want to do is put people off getting it but it is vital our experiences are heard. It made a massive difference to me to know I was not the only one out there suffering.

I have had a bad experience with the vaccine as I have mentioned in reply to your previous posts but I may be relatively unusual as I have very many drug intolerances.

I don't normally have the flu vaccine for the same reason but I felt I would take the risk as I felt it so important that we all get vaccinated for Covid.

I am still suffering 4 weeks on now as it has triggered a huge flare of all aspects of my autoimmune disease.

I saw my rheumatologist three days ago and have been given a steroid injection to help boost my oral steroids. He hopes it will rapidly help to settle this flare.

I must say by today I am feeling a slight improvement so hope that will continue.

But it is vital those side effects are noted and I was glad my Rheumatologist carefully documented what happened to me.

I have also reported on Yellow Card and also ZOE programme run by Tim Spector.

Neriah
Neriah in reply to cuttysark

So sorry you are having such a bad time Cuttysark and glad that you are beginning to feel a little better. As we all know, steroids are a mixed blessing, but sometimes necessary. Thank goodness you've got what sounds like a good, on-side rheumatologist.

Yellow card, as you say and thanks for the info about the Zoe programme. I hadn't heard of that before and having looked it up briefly, it looks interesting. Someone else on another post mentioned Creakyjoints and there's also the Octave study, though I don't know what that covers. Like you I feel we should make our voices heard and not stay silent for fear of - well, whatever it is we fear others might think of us.

Keep going. Spring is just around the corner.

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