From what I can gather, most people are having minimal side effects from their vaccinations. Well, I had the Pfizer jab a fortnight ago and am still struggling. Overall aching and some pain in legs and hips set in after two days, accompanied by exhaustion, headaches, sore mouth and general sense of brain fog and being slightly crazy; also sudden attacks of depression, which seem to fluctuate quite dramatically for no particular reason. In other words, I guess, a flare. I remember it was a touch of ordinary flu which set off my lupus symptoms some 25 years ago and wonder if there's a correlation.
I'm glad it's been okay for so many, but I would be interested to know if anybody else has had similar problems?
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Neriah
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I’m reposting my reply to another post about a simple thing. Hope it helps and makes sense. Remember everyone is individual and no one more so than a lupus sufferer.
I had an interesting experience with my daughters consultant which really made me think. My daughter is 10 and has SLE and so this is about the flu vaccine but I think it has some relevance. Her consultant requested our whole family (Mom, Dad, 17, 15, 10 & 6) have the ‘dead’ flu injection as opposed to the live nasal spray normally offered to children. We all had the injection and we were all fine with it. However for my daughter with lupus it was a different story. At the injection site and then extending to her whole upper arm it became swollen, hot to touch, tender and painful. Her rash that is always present during a flare appeared in that area too. The next day happened to be her 3/12 check up and her consultant examined her. My daughter was very tearful about her arm and anxious about going to a school with her arm. Her consultant is wonderful and explained it to her this way.
“What’s happening in your arm right now, is because your body is trying to fight the tiny amount of dead bugs we gave you in the injection, that way it will remember to fight any alive bugs that get into your body quickly. If you got alive bugs without practice, what is happening in your arm would happen in your whole body and you would have to come into hospital as you would be very very sick.”
I thought that was an amazing way to explain it to her and me at the same time. I’d never thought about a reaction that way before. Now obviously some reactions are devastatingly terrible but a small reaction seems to suggest our body is doing it’s thing and by our body reacting slightly it shows our immune system is reacting and therefore making antibodies.
I would like to rapidly point out though, that no reaction doesn’t means your immune system isn’t working just that each person is slightly different.
That was indeed an excellent way for your consultant to explain matters to your daughter and thanks for taking the time to pass on the message.
It's really atm whether the benefit of having the vaccine outweighs the risk. It seems to be different for everyone and more worryingly perhaps, no-body, including the medics, really knows either the short term or potential long term effects for those of us with autoimmune disease which is why it's important to have all adverse reactions documented
Hi Neriah, I had the Oxford AZ vaccine 2 weeks ago and in addition to an allergic reaction (face and tongue swelling) I too, have had flare-like symptoms since the jab - muscle ache, stiffness, fatigue and generally feeling unwell. My pericarditis symptoms have returned along with a GCA headache. I have reported it to Rheumy and he said to get plenty of rest, carry on with normal meds and to pace myself. So that’s what I am doing. I have been getting the occasional bouts of the “blues” that sneak up on me from time to time, so I get outside with the dog for some fresh air, put my feet up with a film and come on to this forum to get some cheer from the peeps on here. I am starting to pick up a bit now but I definitely think the jab triggered this latest set of symptoms although Rheumy won’t acknowledge either way...Anyway, I hope you start to pick up soon too - we’ll get there! Xx
What a rotten time you’ve had of it HW which might even account for the bouts of the ‘blues’, as it isn’t easy to cope with. My Rheumy referred me for health anxiety counselling after a coronary artery spasm, which occurred on a flight and resulted in the plane being diverted, left me in fear of flying anywhere ever again. It really helped, so if the down days keep recurring it might be worth asking about this. Pleased to hear you are beginning to pick up now. Hoping you feel better every day. 🙏🏻 Keep safe and cosy. 🤗😘
Lovely to hear from you Spotty! 😃 Yes I think you are right about the blues - my poor old bod went into shock and what with the excitement about getting the vaccine and then the allergic reaction straight after, it was all a bit of a rollercoaster! I feel a lot more settled now and doing a bit more each day, so pretty much back to normal now. Gosh sorry to hear about your coronary artery spasm mid flight - that must have been a nightmare for you - not surprising you don’t want to fly anywhere again. That’s something to bear in mind, counselling for health anxiety - I may need it to get me through the second jab 😬🤔. Warmer days forecast this week - the birds are chirping more and the daffodils are coming through - spring is definitely in the air! How is the wildlife where you are? I often think about the woods that got cleared near you - we have HS2 decimating ancient woodlands and closing off footpaths and bridleways not far from us, it’s changing the landscape forever... anyway, hope you are doing ok! Keep safe and cosy too 😘🤗😘
Pleased to hear your body is more settled now after the trauma it went through following the vaccine. That must have been frightening. I can understand your anxiety regarding the second jab. Might be worth asking about the counselling although if they could find some way of preventing that reaction next time, that would be the best cure for the anxiety. My spasm mid flight was also frightening as well as embarrassing as I hate making a scene and having a pilot decide to divert to Prague because of me was massively embarrassing which of course exacerbated my condition. The spasms are excruciatingly painful and resemble heart attack symptoms which is why the nurse on board and the doctor on the ground with whom they communicated didn’t want to take any chances. Two nights in a Prague heart unit, umpteen tests and 2 large anti-coagulant injections into my abdomen saw me stabilised and able to fly home. I’m sure Prague is a lovely city but if I never see it again it will be too soon!😆 I now have a drug called Verapamil as well as a GTN spray to use if a spasm starts again. The last one I had was on the West Highland Way in the woodland above Tyndrum 2 years ago - again very frightening especially as the spray didn’t work on the second spasm a few minutes after the first. I’m hoping the verapamil will stop it in its tracks, but until I have another spasm I won’t know.
Swathes of woodland have been felled in our area which is very, very sad for our wildlife, but it is a cash crop so not much that can be done about it. I objected with the support of my local councillor about the first section being felled in late March - early May the height of the breeding season, but I was over-ruled by even the wildlife crimes officer. However, the Forestry Scotland man took on board that if they want to protect wildlife they need to treat the general public who express concerns more respectfully and not make them feel like time-wasters. So we parted on good terms and I felt that was one very small victory.
We saw a roe deer looking very confused a few weeks ago when it emerged from one area of woodland to find the wood opposite had vanished. Grey squirrels, which are more adaptable, are on the rise and reds on the decline, so it is tragic for our wildlife. But sadly money talks and those of us who really care are in the minority.
I’m so sorry to hear about the HS2 and its effects in your area.
But nature carries on, the snowdrops are in full bloom and the irises and daffies are bravely pushing through, the birds are singing and the days are getting longer, so Spring is almost here. Before this develops into a full length novel I’ll wish you all the best HW and hope you have a good week ahead. 🙏🏻🤗😘xx
Hi Spotty, we quite often live on a knife edge with our various health conditions, not knowing what’s going to happen next or how we are going to react to something - I always admire the positivity and strength that people on this forum have when going through tough times or at least having the courage to put out a shout for some help or to have a vent about something. I think what helps is a deeper understanding and respect for each other’s health journeys and how it can change even on a day by day basis.
It’s warming up now and I’m spending more time outside - nothing like a bit of fresh air and nature to nourish the soul! Hope you’ve had a good week too - just about to make Oreo ice cream for the weekend! 😋😘🤗😘
Yes you are so right HW about the strength and positivity of those on this forum and the willingness to support whilst going through the mill themselves. I don’t know what I’d do without them.Glad you are spending more time outside. 👍🏻 Too windy here for me which is bad news for my ears and kidneys so I stay indoors until it drops. Enjoy the Oreo ice-cream and your weekend! 🤗😘💕x
Thanks Horsewhisper. We have had some similar reactions to the vaccine I think and I got similar medical advice, with the offer of a short course of steroids if things did not improve. So far, I'm just pottering and waiting for time to pass.
I've always given myself a bad time about having the 'blues' (and I've had them considerably worse previously than now) - along the lines that I should stop making a fuss and pull myself together: that I was obviously a weak, self-indulgent character etc etc. Oh dear! And there has always been the question whether the depression was caused by the illness itself or by one's reaction to having a long-term illness.
What has been interesting about my reaction to this vaccine is that I know I was in an emotionally stable place before I had it. Then approximately three days later, I was sitting quietly and at the same time as I felt the additional aching and pain begin, I felt a sudden 'dip ' of something in my head and off went all the depressive thoughts.
In a way this was almost heartening! Showed me it was the illness, not me!
Best wishes and hope you are continuing to pick up
I think anyone living with such awful symptoms would be depressed Neriah. Speaking for myself I certainly get really low and despairing and feel utter self loathing when I do. It wears you down. I found counselling really helped and have just been reassessed for more. Sometimes it all gets too much and there is help out there xx
Ditto that Neriah! I am quite a positive person and was fine before the jab - so yes I think the shock of having such a reaction along with the side affects causing a flare definitely triggered a dip in mood. Back to normal now - onwards and upwards 😃👍xx
Very interested to hear of other folk with side effects as thankfully most are fine after the vaccine.I have not had a good experience and I felt very despondent that as ever my body always reacts in an extreme way to most drugs.I had many bad experiences with many drugs and never get the flu vaccine which my GP understands and agrees with.
I had the Pfizer vaccine a week ago and have a Lupus like mixed connective tissue disease along with vasculitis affecting especially my brain and eye sight receptors . I have had two major strokes and other smaller ones and extreme leg weakness and nerve damage due to spinal stenosis. I had a major back operation for cauda equina nerve compression in my spine just over a year ago. My back and legs frequently give way and are numb.
I also have chronic pericarditis which can be aggravated by drugs, such as methotrexate ,which had to be stopped.
I spoke to the nurse at our hub about my allergies but the doctor in charge said there was nothing in the vaccine which should trigger a problem with allergy. Anyway they said you are in the best place if you react as we have medication to help you.
I also have adrenal insufficiency and am on a significant amount of steroids daily.
Went ahead and got it and within minutes had raging tinnitus, headache, dizziness and the visual loss caused by my stroke worsened alarmingly.
Thankfully it stabilised after ten minutes and I was able to go home. I then was overcome with dire fatigue and total leg weakness for 36 hours but thought it would soon pass.
Instead ,on the second morning after the vaccine I developed a full flare of everything, with red cheeks, temperature ,aching muscles and joints and still the visual loss and severe headache.
I am a little better by now but the symptoms tend to increase again as the day goes on amd last night was awful with my pericarditis flaring badly.
I have increased my steroids from 7.5 mg Pred to 10.5 on advice from GP but wonder if that is enough.
I am now very very wary of having the second dose of the Pfizer and wonder whether it should be contra indicated in people known to have neurological disease.
I was really unable to find out very much beforehand, even from my Rheumatologist, no one seems to know much at all as my problems are unique to me they say! Am in Scotland.
I didn't want to report on here as was not wanting to alarm people at all as it seems to be no problem in most people.
I may just be an unfortunate one off but am very interested to hear about people having similar effects.I wonder if the neurological aspect has made it worse.
I note the others on here with side effects were aware it made them feel quite depressed and I would agree.
Anything profoundly affecting your ability to cope just now is just too much and I feel the lack of knowledge and advice from the medical people is a bit frightening for people like me..
This is a new vaccine and I feel very vulnerable.
I will be reporting all this to the yellow card system.
Oh my goodness how scary and difficult for you. I really hope that your Consultant can provide some information and advice for you. It is no wonder that you are anxious. I hope that you feel better soon xx
Hi cuttysark, thank you for your lovely , kind mesdage and so sorry you've been suffering so much from the pfizer vaccine. I just want to let you know sadly, your not alone as ever since ive had mine on sat, ive got symptoms similar to you. In fact you make me feel so much better that you've had a similar reaction to me.
Within minutes i too had headache and dizziness which isnt on the list of side effects. Joints very achey which has improved and nausea gone quickly.
Now, tonight im hot with pericarditis problems and my chest has been under control prior to this. Its so disheartening to always get ill from these jabs that its not surprising we can feel depressed!.
My Rheumy has always said its good if you do react in this way because it shows your immune system is working properly and not immuno-suppressed too much which i understand. They also dont want to up steroids too much as it makes us more vulnerable to covid!. Its such a careful balancing act all the time!. Its tricky when its a new vaccine that they dont know how everyone with our illnesses will react. We had to have it really because having covid would be much worse.
I do hope you are better soon cutty and i also hope you feel less isolated with this. You've certainly helped me and others feel less alone.
I was worried Misty you might be similar to me as we always seem to mirror each other like twins, so in many ways I am not surprised you have reacted like this!
It is reassuring though what your Rheumy said about our immune system still working despite the steroids!
My pericarditis has settled more now and that is 8 days since the vaccine now but the pancreatitis is still bothering me badly plus headache and sweating.
If things don’t improve I can always get my steroid injection brought forward.
It has indeed been so helpful to find out we are not alone in reacting badly.
I do hope the nasty effects settle down for you ASAP and meantime take good care of yourself.
The good thing is that it is over now and you are more protected from the awful virus. xx
Thank you cutty for your lovely , kind thoughts . It does look like we're a pair. I like Tim Spector too because he ran the twins unit at St Thomas's hospital for years doing interesting research. Its great he's helping with covid.
Im sorry the pancreatitis is being so stubborn and relentless but glad you can bring your injection forward if needs be
Do hope you feel better soon and ill be in touch when i feel better. Its heartened me the pericarditis has improved for you. 🤞
Thank goodness we'll have antibodirs to covid soon. Keep safe. Xx🤞❣🤞
Yes the pericarditis improved when I put the steroid up to 10.5 from the usual 7.5.mg. GP thought no higher as wanting the vaccine to work too like they said to you.I was so relieved the pericarditis and racing heart calmed down quite quickly but was replaced with the pancreatitis!!
Today much the same 9 days on ,but pouring with sweat again and raging tinnitus is back too!! Have managed to eat a little so fingers crossed.
Do you have the 'Zoe Covid 'symptom study app? It's a study where you log your details , symptoms, side effects every day before and after jabs etc , all info is very helpful!
That is awful as it seems most people having the Pfizer have been fine. Lupus makes me feel fluey and generally unwell so felt just the same. Have you informed your doctor or where you had the jab
I have mentioned it to GP who said to increase the steroids but will contact her on Monday. I tried to fill in the yellow card thing online but somehow didn't work out.I think I will phone the number for reporting side effects the nurse gave me at the vaccination.
My feeling is that the vaccine has triggered a big inflammatory response so I should have been more wary as I have such a history of that.
I haven't been seeing the GP much due to lockdown, she is normally excellent and understands my condition well.
We just have to look after ourselves as best we can just now!
I don't but it's not improbable that you got a flare. Hope it's worth it. I was prepared to have a flare and decided it's still worth the shot. I didn't have anything from thw first shot but i heard the seco d one if harder
Interesting that by last night the flare had also brought on the chronic pancreatitis I regularly suffer from. That was the reason I had to stop Azathioprine and also Methotrexate last year. I think perhaps I might have done better with the Oxford as it is not a new type of vaccine but as I said there was no advice from anyone up here.
There is no way now I am having the second Pfizer one and it will take some time for the pancreatitis to settle. Have suffered this for most of my life, it is an autoimmune type pancreatitis.
Will definitely phone and report all this to the yellow card. You bet I will be the only one who has reacted this way!!!
I am so sorry to hear what you are suffering C - it is so unfair one person has to suffer so much all at the same time. I really feel for you. I hope you find some relief soon. 🙏🏻
You poor soul, you have been and are going through such a lot. I really feel for you. I'm certainly going through some 'stuff', but nowhere near as bad as this.
I'm glad that you didn't keep quiet about the effects though. It is, of course, important not to worry other folk unnecessarily, but it's also important to have as much of the full picture of what's happening as we can.
I also wonder whether the Pfizer vaccine is contra-indicated for those of us with neurological issues. That could be a new post I suspect.
Thanks so much for your support Neriah! I honestly was very unsure whether to say anything as the last thing I want to do is put folk off having the vaccine but seeing your post made me decide I would.
I did look up on the internet for any info on neurological side effects for the pfizer one .It is so difficult to find very much so far ,as not enough feed back yet ,but a tentative look would suggest it is definitely less suitable for those types of patients. xx
I had the AZ/Oxford more than two weeks ago as well and also have had issues since. They started out very acute side effects and i reported them on yellow card and now my lupus has definitely flared up and i have all my usual problems when i flare.. My rheumatologist said i should let it ride as long as i can because if he gives me a steroid injection it will reduce the effectiveness of the vaccine, which makes sense. But while I’m incredibly pro-vaccine I’m left being unsure what to do re second Jab and frustrated that they know so little about this.
Like you Shannon I had the Oxford vaccine on 6 th Feb. Onset of side effects was about 8 hours, and as of today over a week later, I am still suffering some unpleasant side effects, the the acute ones I have reported on the yellow card. I have numbness in both lower legs and feet, I cannot lift one arm above my shoulder, very stiff and painful, unrelenting nausea, chills, digestive distress. I have left a message on my Lupus Nurse answerphone for a call back.
Tried 111, they tried to contact my surgery all morning, constantly engaged as it was for me all day last Thursday/Friday. Suggested A & E, said not life emergency, and would just get a telling off.
Just seems that there is no immediate help out there for people like us, and I too am very wary about taking the second jab. I expected issues, as I am very sensitive to drugs, but did not expect to feel this terrible.
I'm really sorry to read this. Are these symptoms ones you recognize from your past lupus flares? I'm now back in a full lupus flare and the "acute" side effects seem to be gone but I'm totally disappointed and upset to be in full flare again after working on getting my lupus under control for nearly 4 months. I have a call in to the rheumatologist to find out what delay is required before increasing steroids to still get some benefit from the jab.
I really hope you feel better very soon. Sending positive thoughts your way.
Thanks for your comments Shannon, and I hope you will get over the flare soon. Was interested you had a reaction from the Oxford one.I also am very pro vaccine as most of us are here, we have to throw everything we can at this virus.
What has been the case though in the rush to get everyone vaccinated, overly sensitive people with dysfunctioning immune systems have been left to cope with any fall out as the medical world out there cannot advise. The Pfizer vaccine is too new the nurse at the vaccine centre explained to me.
I suppose they will say a few bad responses are inevitable.
At least I am partly covered now from Covid itself .
The disease itself might have finished me or not affected me at all.
The lottery I guess, and as long as no permanent damage has been done ,it is acceptable. I am not going to risk a second but do believe it is completely safe for the vast majority of us. xx
I have had a very similar reaction to yours. I woke up about 4 days after the Pfizer vaccine with very swollen lymph glands and feeling achy. Over the next week, the symptoms began to merge into flare type symptoms- joint pain, dry mouth, fatigue, etc. It has been 3 weeks and unfortunately I’m still experiencing these issues. I had a steroid injection a few days ago so I am hoping it will settle things soon! I feel a little better than I did. My consultant said any vaccine can cause a flare up as it can send our immune system into overdrive.
I’m still glad I’ve had the vaccine and have some protection against covid. But it’s unlikely that I will have the second one. It seems that my body really didn’t like it! Most people with autoimmune conditions so far seem to have been fine...but I guess there is no guarantee as to how our bodies will respond!
Sorry to hear your response but reassuring to know what your consultant said about the vaccine sending the immune system into over drive, makes sense. It seems with only one injection we still have a good percentage protection compared with opting out completely.
Hope you will improve a lot after your steroid injection.
I have booster steroid injections every 9 weeks, on top of my daily oral Pred. Next one is 3rd March. xx
So sorry to hear the vaccine has caused you such a nasty reaction Neriah. I had the Pfizer jab on Friday and apart from not sleeping last night due to everything tickling my face and arms, almost like a creepy crawly wandering all over my face, and my neck and shoulders being very sore, Ive been okay. Very tired today but after that sleepless night only to be expected. I hope you start to feel better very soon. 🙏🏻
I've spoken with my lupus nurse. For the time being it's rest, fluids, paracetamol and wait and see, which is kind of OK; I'm all in favour of a conservative approach when it can be managed. Things are improving, but still very tired and one leg is hurting quite a lot. But I agree it's gone on too long and makes me wary of having the booster.
Can you at least take low dose steroids. I cant remember exactly but i have read that under 7.5 or maybe 20mg prednisone it shouldn't have effect on the efficacy of the vaccine. I have been taking 5mg at the time of vaccination last week and still taking 5mg so i hope i avoid a bad flare up. I did notice a bit more symptoms but nothing drastic so far.
Hi Neriah. I had mine yesterday and I feel absolutely awful. The side effects that I am experiencing are very similar to yours. I’m hoping that this doesn’t go on for much longer!
Sorry to hear that Tigger and hope you improve soon. Can you rest, drink lots of liquid and perhaps distract yourself with something not too serious for a few days? I started to feel better after 10 days, but tbh am still feeling fragile after 15. Do get in touch with your doctor if you need to though. We shouldn't suffer in silence and they need to know what's happening
I also had the Pfizer. The first one gave me some bad reactions, high fever erratic heartbeat. It also sent me into a flare but it only lasted a week. Just had the second one on Thursday and was better prepared. The doctor gave me and IV right after with saline fluids for my autonomic problems. I also doubled my prednisone and took Tylenol every six hours. It seems that made the difference. Still having symptoms but not nearly as bad. I hope that yours will lift soon!
I had Pfizer jab a week ago I felt very poorly the next day - nauseous ache headache but was better after 24/48 hours. I have been in a flare anyway so left with aches swelling pain etc but iv been like that for months anyway. X
I was admitted to A&E a couple of days ago, and the overall medical opinion was that it was due to not being on the correct dose of my immunosuppressants but after speaking with someone about my symptoms, they suggested it could be the vaccine. Nevertheless, I let it go over my head but after stumbling upon your post, I had the exact same symptoms.... well, I've still got the symptoms.
It started off with my hips feeling as though they were being ripped apart, headache, migraine, sore and extremely dry mouth (which I thought was my secondary Sjogren's), overall weakness, hot and cold, nausea, hair fall, lightheadedness, exhausted and sore chest plus breathlessness just by walking a few steps. I also had difficulty spelling and became very forgetful / confused (from what the paramedics told me).
The A&E never enquired about whether I had the vaccine but at one point, they thought it was covid but my oxygen levels were fine. I should have mentioned it but mentally, I wasn't with it.
I've never experienced a flare like this before. I'm soooo weak. If it is the vaccine, it triggered all of my autoimmune diseases all at once.
Oh you poor soul! How long ago did you have the vaccine? I had mine three weeks ago now and I'm still having trouble, though to a somewhat lesser extent, with painful, weak legs and weak hips. I certainly had the confusion, though that has improved and the dry mouth and hot and cold and numbness which haven't. Odd about the spelling . I had that too, but didn't think to mention it.Do make sure you flag this up somewhere, with your clinic if possible. They need to know what is happening and I for one don't intend to wander meekly into the booster jab without feeling I have some support from somewhere.
I hope you are beginning to feel better now. Rest and fluids and being kind to yourself. Same ol', same ol' , best wishes
I had the first dosage of Pfizer 20 days ago and I am finally feeling a bit better having had nasty reactions. I have had horrible headache for the first three days feeling hot and cold along with dizziness, extreme fatigue and brain fog. The morning after the vaccine, I noticed my tongue colour has gone dark purple with darker spots and later on I developed very bad mouth ulcers with nerve pain shooting up all over the face. I have had awful taste in my mouth. I think the vaccine has worsened Sjogren symptoms. Now front part of my tongue has tiny cracks (like knife cuts) that really hurt and I cannot taste food well nor eat anything salty . For two weeks I couldn't have a walk at all. Although my doctor says I am having vasculitis flare, not a reaction to vaccine, I do not agree. Because all these happened right after. Now I am dreading the second dosage of Pfizer which is being offered in a week or so. Normally I do not get flu vaccine as they used to make me so unwell.
I do pray we will all get out of this without any long term damage!
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