It started with extreme fatigue - unable to keep my eyes open. Now I am finding it hard to walk and have significant back, knee, neck and head pain. A complete eye Heath check where nothing of concern was found yesterday required 2 hours sleep to recover. I am doubling my 5 mgs dose to do sick day rules. This feels worse than I have ever felt. I am eight years in to PMR - 4 years and GCA/LVV 4 years. I am beginning to wonder if another disease has joined in. My walking is really bad. I am due a flu jab tomorrow. Do you agree that I should postpone it? I have never had an adverse reaction to a Covid vaccine before. I can hardly navigate my own home. Any thoughts or similar experiences would be welcome.
Slow burn flare, following latest Covid vaccine. - PMRGCAuk
Slow burn flare, following latest Covid vaccine.
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SheffieldJane
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I had the same fatigue reaction to the covid vac. Got it two weeks ago and literally was falling asleep for a good week. But my husband who has no illness was also much the same. Though my fatigue is bad anyway, i actually was thinking of not getting it cos i didnt want to face the side effects. I definitely had bad flares to earlier ones, hips and walking very bad like the start of pmr and had to increase the pred. Hopefully thats what is the issue and nothing else is raring its ugly head for you. Personally i would wait a bit for the flu vaccine. Hope you feel better with the pred increase for a bit and things settle. Never a dull moment. Xx
I am sorry to take so much comfort from your suffering, but I have. 🙏Yes, just like the awful early days. I took 10 mgs early this morning ( my magic dose) now I just have to hang on to my evil temper. Thank you! My optician said so many of his patients have been knocked for 6. My eyes are all good - beautiful he said - so I can peer out of a mangled heap at least.
Aw take comfor, willingly given!!!! Fingers crossed it settles xxx give it a bit of time.
I’m so sorry to hear this! I’d be wary of thinking that another disease has joined in, rather that your symptoms are response to the Covid vaccine. I hope sick day rules help and no, I would definitely advise against having the flu jab until all the symptoms you describe subside and a little longer after that.
It’s said that the kind of reaction you are experiencing is a sign that your immune system is reacting to the vaccine and learning to fight the virus: small comfort right now????
Sending well wishes 💐.
Oh I hope you are right! Thank you. X
DorsetLadyPMRGCAuk volunteer
hi SJ,
sorry to hear you are feeling so rough, absolutely good idea to postpone your flu jab.. think your poor body has enough to contend with at the moment.
Plenty of TLC required- and hope you soon feel better. 🌸
I wake to cold tea beside me, I am getting a taste for it.
This vaccine hurt - another first - then I was fine I thought- then the gathering signs of a major flare. Worst ever. I honestly thought I was on the Adrenal wobbly path. Does this mean the disease is active still?
Thank you.
It is now!!!!!!! But it may just be the effect on the immune system as it is developing the response ...
It would be great if this was to a purpose. Thank you! Keep well! You are a beacon to us now.
This vaccine hurt - another first -
Maybe not administered very well then, shouldn't hurt if done properly... and yes agree with PMRpro may well have prompted a flare- hopefully the SDR will be enough to sort it...and don't think we can ever say disease isn't active until we've been off Pred for a few months [and then, as you know, it's not 100% guaranteed].
As long as I am not sent right back to go without collecting £200.
You really learn about the skill of injection givers. All the bloods we have taken - it can and should be painless and yet sometimes you end up with a very bruised arm. I remember my daughter practising on oranges when she did her initial nurse training.
Sure you won't be sent back to GO... and no can't promise £200 either 😏.. and yes some are better wielders of the syringe than others.. some in too much of a rush and don't get it in straight or in correct place...
I am so sorry Jane I guess you’ve had a bad reaction to the vaccine & I certainly would postpone the flu vaccine for a while. Really this was just to say take care & also thanks for the “heads up” to the rest of us!
Yes it is a heads up. Take paracetamol and prepare the bedroom. Thanks 🙏.
I was speaking to a lady in the village yesterday who was unusually walking with a stick and her husband. She has rheumatoid arthritis though you wouldn’t know as she is so active. 10 days previously she had had the Covid vacc and hasn’t been able to go out until yesterday. She said she couldn’t wake up and had had the mother of all flares such that the GP had to put her on a short blast of steroids. It was her first foray out. She said she had never reacted like that before. Her husband was fine.
Flu is low at the moment. I know that changes but just in case you decide your body isn’t ready yet it’s not panic stations yet. Here is the UK surveillance report though you need a good breakfast and a hearty breakfast, or a hearty brain and a good breakfast to digest it all. Covid is rocketing.
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Thank you Snazzy. The Covid 19 disease seems to have had a burst of energy and another evolution. I could have done with sticks or a wheelchair, struggling up the hill from the Opticians. Crawled upstairs to bed and slept and slept. Husband bounced in from London, at 6 pm, I was still there - same vaccine
Sorry you are feeling so bad, you have my sympathy! Please wait to have the flu jab, might be too much for the body to cope with. Keep resting. Hope things ease soon. Keep us posted 🤞
Yes Longtimer. I won’t be appearing for the flu jab tomorrow. I would have the Covid jab again though - we’ve got to beat this thing. Thinking of you. 🌼
Thank you, sitting in hospital right now with cortisol in arm, and just had one in thigh, like you say we will beat this thing, it’s not that we aren’t trying!
For a Synacthen test - that’s not cortisol. What are they doing to you? Remember you have over 2000 friends, so they better watch out.
Sorry that’s my weird head today. Yes an ACTH test had something in arm and thigh (ouch to that one!) nurses very pleasant and said drop 1mg if need to each month, had to educate them! Fingers crossed I get a good result!
Look after yourself.
Fingers crossed for you too. I think we are quite challenging to medics. X
Morning SJ, sorry to hear you are having such a horrible reaction, can't suggest anything to help. Putting off the flu jab for a couple of weeks sounds very sensible to me.
Yes, I couldn’t face it. This has been a shock. Thanks!
Hi SJ,
So sorry to hear you are suffering so badly.
I had this kind of reaction to the very first two covid jabs. I would definitely leave the flu jab until you are completely back to your health base line.
I hope you feel much better soon.
🥰
I didn’t realise it could be like this. First Pfizer I think. Thanks. Probably my 7 th or 8th vaccine/booster..
Sorry you're feeling so bad Jane, like everyone else I'd definitely postpone the flu vaccine. The Covid vaccine grabbed me a bit more than previous ones but not too bad. I felt as though I had missed a dose of pred......tired and very achey, but I rode with it. It lasted 4 days and I was on the verge of increasing my pred but day 5 was much easier. I hope you feel much better soon. xxx
Thanks! That’s interesting, could it be the adjunct or whatever they add to make it stronger?
I honestly have no idea. I suppose it's possible. I had the Pfizer vaccine. I didn't look into it much before I had it I'm afraid.... Hope things are getting easier for you xxx
Oh dear Jane, I'm so sorry to read this. It's small comfort to know that it's likely to be a reaction to the vaccination, rather than anything else. I had my flu jab a couple of weeks ago (do delay yours) and am due the Covid jab next week - I'm forewarned now, in case of ill effects.
Hoping you feel better very soon. 🌻
Thanks Rugger. Yes, put a hot water bottle in the bed and cancel everything, just in case.
Jane I was very much like this , believing I’d fared better than the Moderna last Autumn. I most definitely wouldn’t have the flu jab at present, it’s too much for me immune system.
I even said to my husband I feel drugged or like I’ve had a stroke . If that’s a taste of Covid it’s horrible.
I had an urgent eye check too .
Please sleep , rest , take extra Pred and do test for Covid over the next few days .
I did have the flu jab 2 weeks later , I did still develop covid and have another autoimmune condition join the party as well as Long Covid.
I was reading on Twitter this morning many with autoimmune conditions are having a different non MRNA vaccine. I’m not sure IT’s available in the U.K. yet .
Take care, sleep , rest and Pred will help with this massive shock to your immune system.
Big hugs x
Thank you for your prescription Greensleeves! X
Bless you Jane , feel better soon, I can’t bear all this pain and suffering.
You will slowly recover from this , but it’s going to be a tough winter for us all..
My gut tells me both the vaccine and Covid are hard on our immune systems , although I’m convinced it was the flu vaccine 11 years ago that ignited my PMR .
Chicken bone broth is lovely, the old remedies are good .
Take care I’m looking forward to reading your improving. xx
I have a lovely Jewish recipe for chicken soup, minimum prep. everything goes in in rough chunks and it slow cooks for hours it is divine, the healer of ages past. Knaidlach dumplings too. Heaven in a bowl.
My winter will have different challenges in the searing heat of Australia for 6 weeks.
Bless you too! 🙏
Sounds delicious, now that’s going to go far with healing and helping you get better Jane . Your immune system will love you for it.
Please share when you’re better.
I love a dumpling too . 😍.
Australia will be better than here for Winter , the heat will be tough but you’re away from the Winter virus’s .
Plenty of vitamin D and air conditioning. Mind you it dries my nasal passages up . I prefer a fan .
With the safety of good health care you’ll have a wonderful Winter.
Big hugs xx
You are very kind, thank you. 💜
PMRproAmbassador
There is increasing literature linking the Covid vaccine and PMR. This is just one
ncbi.nlm.nih.gov/pmc/articl...
Currently they are described as rare - I'm not so sure they are that rare if they pooled their resources.
I had a flare with the second, nothing even remotely resembling one since. The last booster, the bivalent one, coincided with a massive increase in my atrial fibrillation,
But it is increasingly clear that Covid itself is triggering a wave of autoimmune conditions and other disorders. And some of them are really not at all nice.
Well said PMRpro , so many more people with PMR since the Vaccine.
We’re caught between the devil and the deep blue sea .
I swore I wouldn’t have another vaccine but do trust the science . Still caught Covid and needed an antibody infusion.
I am so sorry it affected your AF , that’s also something else found in Long Covid patients.
There’s almost a correlation between the two, being more science, logical and practical you’ll have that understanding that I don’t possess . .
Big hugs xx
Wasn't Covid that woke up the a/f, just the vaccine, maybe. The cardiologist wouldn't have it - said it was more the fact I'd been on the medication for 10 years and it only works for 5 or 6 usually!!!! Certainly improved with a different medication!
Maybe the vaccine, it’s a bit of a coincidence people are developing AF after either /or Covid AND the vaccine.
The very fact you’re improving with a different medication says a lot .
They’re too quick to blame Pred for everything.
There are many people in the Long Covid groups who have developed AF .
They say it’s a very unpleasant and alarming condition. Strangely with Covid, your HR can be well over 200bpm .
They initially thought I’d got an embolism with the first infection , crazy high HR , then almost flatlining . The alarms were crazy.
I hope you’re feeling more comfortable now PMRpro .
As said to Jane this is going to be a tough winter xx
Well except the medication worked very well for a few months and then it returned! I haven't knowingly had Covid - escaped that pleasure.
Long may that continue PMRpro , could be interesting checking your Antibodies out .
You could be one of the lucky one’s who are barely affected by Covid.
I hope the AF is controlled . xx
I have no desire to get it - I used a mask for a long time. They are sitting ready and waiting for the winter, just in case!
I wouldn’t go without masks , it’s airborne and extremely contagious.
I think you’re doing wonderfully well.
I would be happy to live alone in a caravan throughout Winter. It scares me that much . xx
The Homoeopathic community has said this about vaccines for decades.
Very likely - but I think I'd trust a vaccine to protect me from some things rather than homeopathy!
I agree. Modern medicine sometimes seems, to me, to throw the baby out with the bath water , regarding some ancient wisdom, though.
I had a bit of a discussion with HU some time ago after a covid-related post I made was deleted by our moderators and I was scolded. They will start a covid or long covid community if an organization requests it. Have passed this on to social media contacts but don't know if anything will happen. It's becoming such a problem and so many people are suffering I wish there were a place like this where they could safely connect and communicate.
The thrust of my post was the fact that the worst flare I had ever had began within 2 days of the Pfizer Covid jab I had. I remember the time when all we wanted or needed to discuss was this new frightening virus - not just you. I remember posts were being deleted. It will die down I expect. I was interested in relation to my Adrenal recovery state and low dose. I could barely walk, first time since the beginning. I was surprised to get sharing and supportive posts in numbers. I would argue that the impact of repeated Covid boosters is having an unusually negative effect on some of our GCA/PMR people and triggering the disease afresh in others. Is that what you meant Heron. It is upsetting being scolded, especially when you are a valued contributor, I remember it.
Oh I did get into trouble more than once over SARS-CoV-2! What I'm referring to was, I think, when I attempted to share some information which I thought would be good for the community to know. I honestly cannot now remember what it was and as it was deleted that's that and I'm sure I know a lot more now than I did even then. But I thought it odd that HU didn't have a community for Long Covid or whatever the correct term is for chronic illness triggered by this virus, but HU doesn't make the communities, organizations do.
I'm sorry you are suffering Jane! Hope you feel very much better soon💐
x
Thank you!
I’m sorry you’re so unwell. My first three covid jabs gave me the symptoms you are currently experiencing. Took 3-4 weeks to go. With the previous one and the one I had last week I only had a sore arm and bit of a fuzzy head, which paracetamol helped/helps. I’ve been unwell with something else and it has stopped me getting my jabs. Happened to have an appointment with Dr Mackie on the 2/10 who said best to be well really. She did advise me to get my flu jab last week, which I did, but to wait at least two weeks before the covid jab. As I only had a sore arm I reluctantly had the covid jab after only a week ( was a drop in at my local surgery). To my great relief I have only had the sore arm and fuzzy head. I am pleased I had it done. I know a few who haven’t been well and would rather have waited but went ahead anyway. They had a couple of days feeling ‘off it’ and are okay now. You are right to follow sick days rules regardless what you decide with your jabs. I would wait until you feel much better and back on your normal steroid dose. Wish you better soon.
Did you remain on an increased dose of Pred for the 3/4 weeks following Covid. I am so loathed to go back, my body doesn’t like it anymore.
Thanks Telian, I am so glad you got away with it this time. Sarah must be the only doctor to admit that pacing your vaccines has some merit.
No I didn’t. I had a chest infection that wouldn’t go and after three weeks of antibiotics and a clear chest x-ray I still had a hacking cough so my GP upped my pred to 30mg ( was on 5.5mg) which I came down from without too much of a reaction. Was harder the lower I got but just slowed it down by point fives the closer I got to the finishing line. Dr Mackie said to not reduce for a further four weeks. She raised her eyebrows at being put up to 30mg but by that time I had reduced back so she was happier. I am very tired but overall pleased with getting the vaccine over and done with. Still coughing but not as aggressive. As we’ve always said listen to your body and get the jab when you feel better than you are. You’ll get there. 🌺
oh Jane so sorry you are not well!!! but I think reaction. perhaps it was also moderna and not pfizer. My friend didnt realize she was getting moderna and had huge reaction..nearly a week. and yes skip flu jab for now!!! sending big healing and rest rest rest. I just made the trip to Sweden again yesterday and slept 16 hours!!!!!! what!!!! haha. can it be we are older? Feel better soon! Glad eyes are perfect.
They were keen to tell me it was Pfizer . Thank you for the healing vibrations. How lovely - Sweden. Are you staying for Christmas? I always think that it would be magical there.
My journey will be 23 hours flying via Hong Kong, thankfully with a flat bed seat.
It’s hard being the star of the show when you just want to sleep. 🧑🏻🎄
Still could be the vaccine!! sleep! No, this time just 2 weeks. I left husband at home.. next time we will come in the spring..for 8 weeks!
Sorry your feeling bad SJ, hope it doesn't last.I reacted similarly to my COVID jab last November, the PMR flared and I had to go back to 10 mg from 5 to control it. In spring I went for the next jab and refused it as it was the same and they couldn't offer me an alternative.
I have just returned from my latest rheumy appointment and had asked her about having the new one which is booked for Sunday. She said she had been to a very interesting lecture by a top rheumy, sorry can't remember the name, who had been researching the effectiveness of the COVID Vax on the severely immune compromised. The research showed that once you have had three vaxes any extra made no difference, even with the most severe cases. She was quite happy for me not to have another.
I wondered if anyone else heard this, were all those jabs for nothing?
WHAT? That is new information to me. I have had 8! I wondered if it was overkill, then I read that it wears off in 6 months. These days, if there is profit involved, you don’t know who to trust.
It does diminish over time ... which is why it's recommended to have another on a regular basis ...particularly as Covid is continually evolving.
I imagine it will become an annual procedure like the flu jab - that is a slightly different strain each year..
I think the effectiveness of mRNA vax starts wearing off very quickly. Novavax is a subunit protein vaccine and targets a different part of the virus. It retains its effectiveness at a significantly higher level for a longer period of time than the mRNA vaxes do.
But what do they mean by "severely compromised".. most on here don't fall into that category once they are below 20mg..
... and those with suppressed immune systems will still get protection from COVID-19, just not as much protection as those with healthy immune systems. Same with any vaccine.
No details I'm afraid, just far worse than those on PMR's low doses of pred was all that was indicated.
Did this take into account that the new mRNA vaccines no longer even include the original Wuhan strain? They are vaccinating against Omicron now. Not calling them boosters here any more, considered a new vaccine - just like the flu vaccine we get every year is supposed to target the current variant and is not considered a booster.
I'm hoping we get new version of Novavax here sometime before the end of the year. It remains effective much longer than the mRNA vaccines do.
I must admit Heron, that I feel the same way about the different variants. I intend to have this next vaccine because it contains protection against the latest variant which I have not had before.
Had absolutely no reaction to my Pfizer vaccine last spring. Like I'd never even had anything injected. Previously had the then current Moderna bivalent and felt quite ill, not usual vaccine reaction at all. It didn't feel right. So I'm hoping for something different! So far have racked up 4 Pfizer and 2 Moderna, but have very little faith in the vaccines, wear a mask everywhere and avoid a lot of activities I'd otherwise have enjoyed. Or even things I might not enjoy 
. Was supposed to have a regular dental appointment recently but there's no masking at the dentist any more, other than when they are actually working on your mouth, protecting themselves from patient. The small waiting room was packed with unmasked patients, and I was able to see into the tiny room where my hygienist was carefully wiping down all surfces, but not wearing a mask. They were good, allowed me to rebook for a later date first thing in the morning, when only a few of the dentists will be in.
I'd heard the six month thing too, but then we're probably reading the same things. As you say, who knows what to believe
Hi, my flu jab last week resulted in nasty flare. My g.p. Recommended postponing Covid jab for 6 weeks.😳. Just passing my experience along….j
That is interesting. Thanks.
Sorry to hear what a horrible time you’re having. So frustrating. I had both flu and covid last week and as with all 6 of my vaccines I haven’t reacted to any of them which I find weird!! Not sure if it’s good or bad. I’ve been suffering for same number of years as you but we’ve had different experiences. I’m veering towards the RA category now. These vaccines appear to be very individual in ones response. Hope you feel better soon. Kirstin
My Rheumy mentioned r.a. At last visit. I expect I need to be more proactive about getting tested/ diagnosed for it. Thanks
Thanks Kristin - it has been years, hasn’t it? I hope you do well.
So sorry you are feeling awful SJ. As if you need this in the works?? Hoping you get some relief from the symptoms soon, especially the fatigue. Sending you healing vibes.
Thank you. I hope you have recovered from your exertions over your son’s wedding and had /have a lovely time!
May I ask what brand of vaccine you had? They're just starting to roll them out here and I've read of so many people elsewhere having unusually unpleasant reactions this time around.
Hope you feel much better by tomorrow.
Pfizer
Oh, and by the way, our bodies are much more used to the flu and flu vaccine, so if you are actually up to getting the shot might as well get it over with. But if you are still feeling ill probably wise to wait.
I’ll go and ask them - not quite as informative as this forum though, I bet. I want to be fit for Australia.
Hi SJ, sorry your going through a bad patch,I get COVID vaccine next week, I do wonder if I need it but I always take it just in case, will leave it for two weeks then any pain will hit in with some extra pred, hope your better soon. Harry xx
I would have the Covid vaccine again. I am feeling better on sick day rules. Thanks - good luck with yours, that was my first bad experience.
Glad you're feeling better. Rest up!
I got the flu shot in the end because I felt better. No bad reaction, just sleeping as usual. 😴
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