Yesterday morning I had the first dose of the AstraZeneca vaccine and by the evening I had the usual flu jab side effects - headache, stiff neck, a bit achey.
By bedtime I was getting worse and then I woke up to full blown flu symptoms in the night. Chills, sensitivity to touch, awful joint and tendon pain, a blinding headache, and my kidneys were throbbing. This morning is not so bad (still can’t get up as normal) but I suspect the vaccine triggered a big flare.
Has anybody else experienced this? I don’t want to put people off getting the vaccine, I just want to know I’m not alone in this crazy reaction! The doctor said it should cause minimal side effects 🤔
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Londonlupie
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Someone else has posted recently about having a large red and hot lump at the vaccination site. I think when doctors say minimal they mean that any reaction should be short-lived. Even if it lasts a few days - in comparison to dying of covid (or being so seriously ill that you have organ failure) - that would be minimal in my book. Not looking forward to it happening to me (if it does) - but so much looking forward to not being so frightened that even a bit of a flare would be perfectly acceptable.
Hi WinterSwimmer, I totally agree - the temporary side effects are worthwhile in the long run. I do think the community should generally be more aware of the potential for symptoms and flares after the vaccine though. I found mine completely debilitating, I couldn't move my arms or hands through the night! I certainly wish somebody had warned me beforehand, but I'm feeling much better now. Good luck with yours!
Unlike Pfizer and moderna, the AstraZeneca is based on a weakened live virus platform if you usually do not take live vaccinations well it is worth speaking to your gp.
Hi Poshcards, you're absolutely right! The AstraZeneca (Oxford) vaccine, which I had, is an adenovirus vaccine which does infect certain cells for an immune response, but is largely safe for use and doesn't allow Covid infection to grow in the body. I believe adenovirus vaccines are more likely to cause cold/flu-like symptoms though. It's quite complex and I don't fully understand it, but there seem to be advantages to this type of vaccine in the long run...
HiMy daughter had the vaccine last week. She has no underlying health conditions. She had the Oxford vaccine as she is a nurse. She felt really unwell for a day or sp
Thanks Lou, I'm already feeling ten times better now! Flare symptoms are still there but the fluey symptoms are subsiding. I'm glad you were able to recover too, and here's to a brighter future Covid-free!
I'm sorry to hear this whaleroad, be sure to drink plenty of fluids as your kidneys will need it! If it's any consolation I would say I'm now experiencing regular flare symptoms as opposed to the fluey symptoms I had through the night. My body feels like it's really been through it though, so lots of rest and self-love for us Wishing you a speedy recovery!
Hi, i had my first dose of the vaccine on friday, it was pfizer, i was worried about the side effects but all i have experienced so far have been a pain in the jab site and fatigue lasting 24 hours, i guess we all react in a different way.
Same here Londongigi. I had Pfizer on Saturday. I was scared, but knew it had to be. All I have now is a sore arm . And hopefully that is all I get. I have had bad reactions to the flu jab in the past. Good luck to everyone.
Hi I wanted to get in touch as I'm about to have my covid jab & its worrying to see everybody's reactions. However, what concerns me more is you being on hydroxychloroquine. I felt you need to hear my story and query this. I have been on it for 15 years. 2 years ago I started to have visual problems. A year later, too late i discover after many tests that this drug has permanently damaged my retinas. My sight is now limited. Please ask your doctors about this. I was on this for 13 years before suffering side effects so my doctors didnt realise til too late. I was told that side effects would be in the 1st year & as I'd been on them 13 years without problem they ruled it out. Would hate to happen to anyone else. I had to get off them ' cold turkey' as it were then suffered withdrawal symptoms. Dont want to frighten you but please be careful.
Karen that's terrible. From what my rheumatologist told me the damaging side effects begin after using the Hydroxychloroquine for over 5 years. In fact I believe the BSR or somewhere has issued guidance that after 5 years on it all patients should have annual eye tests to check their retinas. I see Moorfields eye hospital once a year as well as my annual sight test, I've been on Hydroxychloroquine since 2005 and so far been okay.
Thank you for sharing that Karen!I’m on hydroxyqloroquine, 8 years now. But I do have annual eye checks. It’s been all okay so far but what you say is truly worrying.
I am concerned now, been on Hydro for 16months now, took 14months to have a rheumy 8minute telephone review. I am already having conjuctival bleeds, & blurred vision on one eye. Only have yearly optician. Gp hopeless
My rheumatologist calls me up for yearly checks on my eyes to make sure they still look normal and healthy. Didn’t you get “regular” checks? I’m so sorry Karen, that sounds absolutely awful.
So sorry to hear about your sight problems, as that must be very distressing. When I was given a provisional diagnosis of lupus a couple of years ago, I was prescribed hydroxychloroquine, and was immediately booked in for regular annual eye scans at our local eye hospital. I actually had a private one done early on to give a baseline to compare with. In actual fact, I stopped taking the med after 6 months because as it was making no difference I didn't want to risk eye damage for nothing. If I have to go back on hydroxychloroquine in the future, I shall be sure that I get my regular scans. Maybe in the past when you were first put on this med not so much was known about it? Well worth bringing this to people's attention, though, thank you.
Sorry to hear that. I had my annual eye test at optition where they noticed problems with back of eye. My consultant got me to have yearly tests at the hospital where they have said it's not due to the hydrochloride but age🙊🙊 as am in the 50s bracket. I am only on 1 tablet a day .
Hi Karen. The same thing happened it me. I was on hydroxy then it was changed to Chloroquine for 13 years . I was having eye tests every 6 months with an optician never told I needed to see an Opthalmologist. The damage to my eyes is very bad and it affects me on a daily basis. I wish I’d known this earlier. I think things have changed now and everyones more aware
Hi Karen I've recently stopped taking mine as out of the blue I was getting side effects and my vision hes gone abit down hill been taking them for years I'm glad I've seen this as I was thinking of restarting due to flare ups
Same I was on it for over 10 years and I have macula damage please be careful. I’m on nothing now as had to come off it with immediate effect. My eyes feel better and might sight has improved but no test results yet.
I am glad you posted this. I am not sure if immunocompromised folks should get the vaccine what with it being so new. I take Remicade and Dupixent and I am afraid of drug interactions...
Hi OneLove, I totally understand your concern. I do believe the vaccines have been tested for immunocompromised populations, but do of course check in with your doctor if you have concerns. I don't think the newness of the vaccine should be a worry though, as the flu vaccine is made very quickly each year based on new strains and is safe for rollout each time
Hi, I also had the Astra Zeneca and had stiff painful neck and shoulders and heavy laden legs when walking. Legs are now okay, but still have stiff neck. I have no regrets for having taken the vaccine. I want my life back!
Hi. Same here. Had mine on Friday. Could barely function on Saturday. Red lump showed up yesterday with heavy arms. Still a little achy this morning but definitely much better.
Hi, this can be a fairly 'normal' reaction and should only last a couple 2-3 days. Sometimes it is accompanied by a high fever but not always. It is however not a reason to not have ur second jab as it isnt classed as an anaphylactic reaction. So I wouldn't be put off having ur 2nd. I have known pts to have this kind of reaction to both of theirs 1st and 2nd unfortunately but only lasted 24 hrs for the 2nd vaccine. Some people didn't have a reaction to the 1st but only the 2nd. It's just our bodies immune system responding to the vaccine and ours just has a bit of an over reaction at times. I'm sure in a couple of days u should feel better. Just rest and plenty of fluids.
I had mine on the 26th. Next day, painful arm, hot head, headache, generally feeling ill and unable to concentrate, fatigue and nausea, high temperature. The next day pretty much the same. Every day since, feeling generally less ill. Today’s the 7th day and I still have a hot head and headache and still feel a bit ill!
ETA: paracetamol and day nurse doesn’t help at all
Same here! I had my vaccine yesterday afternoon (the AstraZeneca one) and I didn't feel too bad for the first 4/5 hours afterwards, just a bit tired. During the night and this morning I feel really rough, I feel like I have a temperature, chills, I feel exhausted and my arm is throbbing, it feels worse instead of better (nothing to see though in terms of swelling, I don't think). But I think the first 24 hours is usually the worst so I'm hoping by this evening I'll have picked up. No rest though, I've got to work today 🤦🏾♀️. At least no commuting anywhere😊.
I believe...... in rare circumstances (so you are unlucky) the vaccine can trigger side effects ranging from very mild - (less rare) to quite extreme (v.rare). This may well be an indicator of how bad you would have been affected if you'd actually contracted Covid !
in any event - it will be wise to contact either your GP or NHS direct to alert them of your side effects - so they can monitor your recovery.
I had the AZ vaccine and felt unwell for maybe 24 hours. My son a COVID doctor felt it was quite good that my body reacted this way showing the immune response was working.
This is very valuable Londonlupie. Thank you. I agree with you. And your note is very useful for me. I can prepare my daughter and be prepared myself in terms of paracetamol, keeping an eye on her etc and try to take the vaccine at different times so that both of us are not ill at the same time (both have lupus). Unless someone tells you the potential side effects, you will not know and it can be scary. In fact, they should call each patient afterwards to check on the progress of the vaccine and note symptoms and compare and contrast and produce reports in the groups that they work with. Each person reacts differently but at least if we do react, good to know the possible side effects and relate to it that its the vaccine, instead of spending a whole night wondering . And there is a second dose which needs to be taken into consideration. Good to know you got over the symptoms. Most of us live alone and it can be a scary experience if you don't know whats going on given we all have underlying health condition. Thank you again. Lale
Hi Lale, I'm glad you found it helpful! I think medical practitioners are likely being cautious about warning people as they won't want to scare people off getting the vaccine, but it's certainly worth knowing about in advance. As you say, you can make preparations, especially if you live alone and nobody is there to help you through it. I would say my flu symptoms started around 12 hours after having the shot, although I did need to rest around 6 hours after having it. Take care of yourself!
Have any of you guys got sle and aps please? i have several issues with anaphylaxis so wont be getting the pfizer, itll be the astrazeneca. im new to both these conditions so still learning, i was really unwell with the pneumonia jag but not so bad with the flu a few weeks after it. bowing to you guys experience , is that likely to be an indicator . im also due a bone infusion in march which always makes me ill for 2-3 weeks , not keen on the lot together .
hope everyone who has had it is feeling better soon
Sound like common side effects theyve mentioned but they should be gone shortly . At least your immune system reacted to the vaccine that can be a good thing, my doc told me wait on the vaccine as there were not enuff studys on lupus patients yet or patients on the drugs im on , immune lowering drugs. So i gotta wait 4 studys. I hope u feel better real soon .
Haven't had either pfizer or the oxford yet but looked up side effects when taking my elderly relatives. "Flu like" symptoms are recorded for both and not unusual. If they persist, might be worth trying to make sure you get the same jab for the second dose (try gp?) as might minimise any effects of that.
Hi Sunshinebeach, I'm sorry to hear you've been unwell with this too! As you say, important not to put people off but definitely worth factoring in a few days of rest after having the vaccine.
I'm now on day 3, slowly feeling better but full of aches and my joint pain and fatigue have really flared up. Sore throat, tongue ulcers and swollen lymph nodes this morning, all part of an immune response but of course for us lupies it all tends to last much longer.
My advice to everyone would be definitely get the vaccine, but take extra good care of yourself leading up to it and after to minimise any side effects!
Hello so sorry to hear you had such a bad reaction. I had my jab on the 22nd and the only thing I can complain about is a very painful muscle. That was the left arm were I had the jab. 10 days after and all I can say is feel much happier knowing that only need to wait another 10weeks for second dose. Lots of spoons to you all and Stay Safe. Go for It!!😍
Can I ask how many of you have been called up for the vaccine and are under the ages that have been called. I’m 49 and been told I’m in group 6 but so many people with Lupus seem to have had theirs.
I had my jab Friday 10.20 am by 1pm I felt fatigued and sore arm- by 9.15pm terrible fever, shivers , boiling hot, muscle spasms , growing pain feelings in all limbs, splitting headache , neck pain, nausea . It’s Tuesday 6.45am I’m still unwell. Not as bad - but worse I’ve ever been . It’s caused a flare up of my Behçet’s disease as well as M.E. Will I go and have the 2nd vaccine in April ? Yes! Because I haven’t gone through all this to bit have the protection it will hopefully provide. I was thinking if this my immune system what it thinks is an fighting. There’s no way i could have coped with covid and that. I haven’t told anyone on social media over and above I went for my jab. I feel it’s my duty to not discourage anyone too.
I suffer with R/A and I was extremely ill and felt like I had a huge flare up. I couldn’t get my heart rate to come down from 120 for 6 hours so had to be taken to hospital. How was your heart rate. It’s out me of having the second one.
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