Can Covid Jab initiate a PMR flare? : I had second...

Hi,

I m the same as you,same vaccine,had it done a wk Friday.

Was fine all day but following day Saturday I was not feeling well.

Red lump where I had the jab which one would expect,but as the day wore on I got worse,feeling under the weather.

Then the shoulder pain,back pain and so on,and I m struggling to control it.

I m on 13mg of pred,but it’s still playing up!

My shoulders are the worst at the moment and left hand,thumb.

Best wishes to you.

Ruth

Was that the first or second jab? they say the second jab creates more side effects.

Hi pastit,this is my first injection,

Just hoping when I receive the second jab it’s not worse than this one?!

Still not feeling right,might take a day off work when I get 2rd one.

4 weeks since mine, still do not feel 100% but last 2 days back to 3 mg. Only hope I feel more lively soon. Wife had a AZ Covid jab last Saturday and spent two days in bed. Mine was the Pfizer vaccine. Not looking forward to the second jab but should give us some protection and just have to suffer the side effects hoping they are not long lasting.

Morning,

I too had the Pfizer vaccine,and my boss had the AZ one,she too was unwell.

But we are so lucky to all involved in making our vaccines to protect us,and I m so greatful to them all.

With luck we will be ok with the second jab.

Fingers crossed!

Hope your wife improves soon.

Take care

Ruth

Hi Ruth,

You are right, the scientists and medics have achieved an amazing thing in developing the Covid vaccines. We should all be grateful that they produced something so quickly. Apparently, it’s not an entirely new technology, its something they toyed with some years ago but abandoned it due to the side effect it produced in those early days.

So, we are where we are as they say, and if some of us experience a flare as a side effect then it is, as PMRpro and others have said, “better to deal with a flare than experience the full blown Covid” even though they admit it won’t stop us from catching it. The variants of Covid are another obstacle, no doubt they will sort that as well.

I know that it is very easy, especially in lockdown, to feel sorry for ourselves, especially when we develop a flare. But my only consolation is to remind myself that the world is full of people who are far worse off. So, the Polymyalgia Rheumatica that we are experiencing is extremely painful, but when we remind ourselves of all the other devastating things that we could have, I must thank my blessings.

Wife appears to have recovered and almost back to her normal self. She is on a Pilates session on Zoom, so she is obviously ok. Hopefully, my flare which started 10 days ago is under control and I’m back on 3mg. Only time will tell if the idea of adding 5mg (but I added 7 for 2 days then 5) to existing dose for up to 10 days works. I must admit that going back to old dose should have been 1mg more, but the flare was not caused by being on not enough pred. Time will tell, early days yet. Now in my 7th year on pred, I know what to expect.

Stay safe and enjoy whatever little we can do. Oh, and sorry for a long-rambled post.

Pete (Pastit as usual)

The mRNA technology wasn't entirely abandoned, just the disease vaccine stuff was put on the back shelf. It's in use for cancer vaccine therapy

modernatx.com/pipeline/ther...

Thank you, very interesting indeed. Modern 'technology' at its best.

For what it’s worth, I know 2 people that have received their 2nd vaccine. Both said it knocked them flat on their back for a day. Good luck with yours.

Yes, I have had a flare after the Covid vaccine. I had been on 3mg for at least 4 months due to the difficulty of reducing further because Dr said stay on that until weather gets warmer. I felt good on 3 mg with no PMR pains. When I had the Covid shot I felt ok but after nearly 3 weeks the flare started, pain in shoulders and top of buttocks, same as when it started, but also had pains in top of legs which I haven't experienced before. Have been very active during lockdown with daily walks about 3 miles. Added 5mg to my 3 mg and back to 4mg 10 days later. Now dropped to 4mg so watch this space.

Good to know as I am in a similar situation today.

Hi Kath567, all I can say for now is that we are not alone.

Add me to that list too , upped to 15mg , it’s helped shoulders but tops of legs are throbbing and dreadfully painful. Two weeks today since vaccine. Not sure if it’s the vaccine, pred withdrawal, family stress . Who knows, my instinct is telling me it’s the vaccine. How do you comfort the outer tops of your legs ? I wish the Bowen technique therapist was open. She was marvellous, I don’t know how it worked but it always helped. Hope you both feel much better soon. xx

No, I don't know how Bowen works - but a really good therapist is worth their weight in gold!! They are all airy-fairy and lights and smells here - and cost even more ...

She was wonderful PMRpro , a little pinch here and there and it miraculously helped relieve any flares . She even invited me to her home for treatment once when the building was being updated.

The background music , sounds of waterfalls, birds and aboriginal instruments was annoying, but I could put up with that .

I’m cynical, reflexology was relaxing but didn’t help, neither did acupuncture even though I was treated at the hospital by a physiotherapist. I can see it would potentially help some conditions . The needle in my thumb was sending strange nerve tingles to my shoulder . But nothing has helped relieve PMR like pred and the Bowen technique . xx

Mine in the NE was a very pragmatic and down to earth lady! Both of them actually. No woo - just good. I can't stand background music either ...

That prompted the question of have you or are you going to have the Covid vaccine??

Of course, when they get round to me, probably in mid-summer the rate its rolling out here!

Fingers crossed for you. Some countries are slower than others. EU problems, can't make up their mind quickly due to varying thought's throughout the Union perhaps?

Oh Italy isn't being slow, they just have different priorities. The first vaccines were for over 80s in care homes and medical/care staff with both shots being given according to the original clinical trial protocol - and then the supply chain was disrupted due to manufacturing problems. They have just about done all over 80s living at home and the AZ vaccine is being used for teachers and other essential workers, initially under 55, now under 65 once they had more clinical data. Now they have comprehensive data for the AZ, vaccine full approval is on the way for it. But we are both under 70 so although OH is CEV, we get no priority for that.

There are a lot of vaccine sceptics in Italy and France, Germany as well probably, so the desire to do full approval is associated with that - then they cannot level the charge "it was rushed through". The UK took a risk - as it happens it has paid off but there are a lot of things to consider to persuade people to have it. The government here in Italy doesn't have too much of a problem with ordering compulsory vaccination - we have had dreadful problems with anti-childhood vaccination and now no child is able to go to school and kindergarten without their shots. Measles was becoming a real problem again. I wouldn't be surprised if they introduce it for certain workplaces. It is more difficult to do it by stealth by making it a requirement for flying or travelling to other countries because of the Schengen zone and many Italians never leave Italy anyway. There will be a lot of people persuaded to have the vaccine to go abroad though

Nice comments, almost everything is in a state of flux due to the pandemic as you know. Now the EU have banned the movement of the AZ vaccine to Australia. What next I wonder?

Was it the EU or Italy?

There were contractual obligations by AZ which they haven't fulfilled and Australia doesn't have half the problems we do! As they so proudly announce ...

An interesting point. The BBC news said it was the EU.

Italy did the deed it seems, backed by the EU. So says the Guardian

Yes, I just read that confirmation as well.

Now entering my 5th week after the vaccine and back to the 3mg I was on before the jab. Things have settled down dramatically and I feel better in myself. Pains I had in my legs which was a new thing have disappeared so maybe you will feel better as time goes on. But honestly, I think PMR can manifest itself in many ways and an injection of vaccine I am sure can influence our PMR symptoms. Hope you feel better soon.

Having same type of experience , things beginning to settle down after about 4 weeks and a +4 mg pred bump.

Interesting, I think that many of us are having a new experience since having the jab

So this morning I went to 7 mg from 4. Definitely helped, Did you have a set schedule to get back to 4 mg in 10 days?

Yes, the recommended procedure is to add 5mg from when the flare developed and stay on that for up to Max 10 days then drop down to 1mg more than when you had the flare. So you could have gone up to 9mg then drop to 5 and then try to drop using the normal reduction procedure. We are all different so it's worth a try. Others will be along to confirm this method. I got the method from the forum and not a doctor, my local Doctors don't recognize it so this method is not medical gospel.

It is possible to drop the dose straight back to pre-increase levels for up to 10 days or so. Some people prefer to drop 1mg a day, others in a couple of steps a few days apart. It is only the same as someone not on pred being given a short course for asthma or gout - just the baseline is a bit higher.

Yes, I had a mild flare after the Pfizer jab. Tired and PMR pains got worse, I had mine 2 weeks ago and starting to feel better now

Who knows? Probably Logic says anything that has a poke at the immune system could upset itl But OTOH - what would the alternative do to us if we caught it!!!

Hi,.. Let me be very clear, I am, in no way,....suggesting that I should not have gotten the jab. The minor nuisance of a mild flare is nothing compared to the risks of contracting Covid.

I am, however, always on the lookout for possible causes of my PMR aggravation, and even a minor dental procedure can buzz it.

Thanks Everyone for your input.

Oh no, didn't think you were. But if the jab does it - I hate to imagine any further.

Have you reported it as an adverse effect? Do your dentist pokes result in a long flare or just a brief flurry?

Hi😷

Yes, the people administering vaccine are collecting post data, and I have reported.

As for dentist, the consequences were insignificant in the big picture. I had a wisdom tooth removed, and prepared ahead with a 5 mg pred bump. The worst part was having my mouth jacked open so long, which aggravated tmj .

I must say,...I am a dainty flower, and sensitive to upsets to my carefully balanced system. 🤣

Now what we need to do is persuade doctors that that is why some of us have such a performance reducing pred or doing anything else!!!!

With you on the dainty flower thing!! I should be in a bubble. Pretty sick of it all!! Hope your flare calms down soon !

If we had a bubble, we could go out again Going down the pub could pose problems though ,,,

😉

I'll be working on the pub thing....many of our little neighborhood craft beer pubs have built outside shelters with heat, so we can sit under cover, on pub stools, outside in the rain. Pacific Northwest at its best!

Loads here too - the best I saw was old gondolas from a ski lift - just right for small parties! And somewhere in The Netherlands the food arrived on long boards that could be inserted through the doors onto the table from outside!

I am so sorry to hear this Purplecrow. I think your management of it sounds very wise. I was attempting to get from 10 mgs to 9 of Pred( I am on Actemra weekly injections too). Since the Astrazeneca jab over two weeks ago, I have felt more viral and have had stabbing pains in the side of my head. Obviously I have stopped all notions of Pred reduction and resumed Actemra ( halted for antibiotics, for chronic eye infection). I think I am feeling better, loathed to increase Pred as I have the Actemra safety net, but have considered it.

Hi ,

Yes I’ve started a PMR flare again, almost 2 weeks after Pfizer vaccine. Haven’t slept with bilateral severe shoulder and hip pain. I’m going back up to 10mg for now .

Also unavoidable stressful situations. I was eating sweets too yesterday to comfort myself, which is ridiculous when there’s inflammation in the body . I hope you feel better, it’s better to be pain free .

I appreciate your perspective. It sounds like we have been on parallel paths with PMR and the associated aggravation. I have been fairly comfortable with my PMR management, and this current issue is but another bump in the road.

Take care, J

True J , just another bump in the road . Take care

"First lower back pain and hip SI joint irritated. Then, both shoulders began to be painful...eg dressing, turning over in bed"

I experienced all of these symptoms. I think it a mild flare of reactive arthritis because the pain isn't widespread. My rheumatologist thinks it is more likely PMR and wanted me to go back to weekly injections of TCZ. I tried that and it only helped for a couple of days after my TCZ injection.

I mentioned taking some prednisone again but my rheumatologist would rather that I have an earlier visit to see her first. I'm relatively sure it is a mild flare of reactive arthritis in my case. It has happened before with other vaccines. I have been off prednisone but I decided to do a 7-6-5-4-3-2-1-0 daily taper of prednisone. Then I will let my rheumatologist know how it worked.

Your plan sounds spot on. My doc is mostly in place as a source of pred prescriptions, and I have managed my PMR with sound guidance of many of these forum partners. I, also, have arthritis, and sometimes, it's impossible to tell the chicken from the egg. In the end, judicious use of pain meds, anti-inflams, and pred , have kept me moving along.

I always struggle with how much to tell my rheumatologist but she knows more than me. Sometimes she is overly concerned and sometimes not concerned enough. I have made those mistakes too so we are all human. If my plan doesn't work, then I won't elaborate too much about what I did and go have a visit with her. So far the prednisone is keeping the pain in check. I don't know if that means anything though. I guess that I will know more after the week long taper.

I'm somewhat dreading my 2nd vaccine dose next week. For me, it is all about my immune system. I don't like to jazz it up too much.

Hi Dad, this Don't worry about #2, everyone gets a bit of a drag after that one. Just find a paracetamol, or other nsaid, and plan on being a bit sluggish for a day...no big deal💜 (says I)

I'm too afraid of the covid virus to forego the 2nd vaccine shot. I've already had a bad response to a norovirus infection and wound up in intensive care. To this day, I don't know how it happened. For some reason, I showered both lungs with multiple (extensive) blood clots. The pulmonologist and the hematologist didn't have a good explanation. They only said it was a cascade of blood related events. I also heard whispering about prednisone outside the intensive care room.

No nsaids for me because of warfarin for life. I do take ibuprofen once in awhile and acetaminophen is allowed. Otherwise, not many options left. Dmards have never helped that much.

I'm very grateful for tcz and I hope it is still working. That's why this current pain worries me. I haven't needed too much prednisone for more than a year. I was reluctant to resort to it again even if I only plan to take it for a week.

Isn't ibuprofen an NSAID? Or maybe I've got that wrong.

Yes it is ... I just indulge in one occasionally even though I'm not supposed to.

Oh, fair enough, that makes sense!

I had my first vaccine two weeks ago. I had just got down to 9mgs ( again - third tome in 12 months ) - developed shoulder , upper arm & neck pains which have never really had since I went on pred - usually it is all in the upper legs / thighs / buttocks - so have had to increase . Suspect it is the vaccine but it is better than Covid which I went through at Christmas.

I have always suspected that PMR was triggered by my flu vaccine 16months ago anyway but I am still waking up every day and, after having a close friend aged 47yrs die from Covid two weeks ago , I greet each day as it comes and make the most of it .

Be strong out there everyone - lets hope it gets easier . It is great to have this site for support and comfort to know we are not alone in our sufferings.

I agree , an increase in pred is a thousand times better than catching Covid again.

Strange it’s taken 2 weeks for the flare to show itself since vaccination . 10mg isn’t quite relieving it , I may have to go up to 12mg .

Thankfully 10 weeks until the 2nd dose .

Hopefully I can drop back down once this is under control.

It feels like the first brush with PMR .

Hope you feel much better soon.

I am dreading this happening to me....it's a crapshoot.

So should I decrease or increase my dose before I have my jab r stay the same? I'm currently on 15

Since many folks dont have trouble with the vaccine, you might just wait and see how you react. My pred level was 6 mg when I received my second jab, and I raised to 10 when finally figured out what was happening. I absolutely feel the PMR discomfort is small price for protection from Covid.

Be well, J

I’m not sure it’s wise to decrease, bear in mind you may have to increase if you have any side effects. The problem we face now is if the vaccine gives us protection . Not sure if you’re currently doing a slow taper or staying on 15 for a while. It’s a minefield . I’ve increased to 15mg now as feel wretched.

I've come down by 2.5 at a time from 40 but seem to have hit a wall at 15 and symptoms are returning

Just emailed my rheumie and she stays no need to reduce dose

Thanks that’s good to know. I hope you start to get some relief soon at 15. It’s hard not knowing what to do . I was looking back and the last time I felt like this I had to increase to 30mg . Take care x

I made my own decison to go up to 40 as I went to 20 then 25 and it still wasn't working, so I thought go high and work down. 40 was fantastic -best I have ever felt in 9 years. But below 30 things have started creeping back. I may have to stay at 15 a while and next step will be 13.5. My rheumie is great and trusts me to know what to do. I do wonder whether being a long-termer means I need more than a newbie as my body has got used to being on Pred, or maybe because I'm not exactly thin I need more than a skinny person, who knows. I was getting very depressed about it all but now think worrying aint going to help me, I just need to keep calm and carry on, play it by ear.

This is the problem, I’ve had symptoms since 2012 now . As soon as I tapered off completely, it came back worse than before within a week. Rheumatologist said may have to stay on 5mg maintenance dose indefinitely.

Messed it up by getting Covid, increasing dose and dropping too fast .

No relief at 15 now . I was struggling on a low dose , for years , no quality of life . I can see that now .

I’d lost the huge weight gain at 5mg but fat tummy has never gone .

The worst thing for us is stress , worrying about dose is detrimental.

I think we have to accept, relax, try and follow a plan, in our own time and our own pace . The slower the better. Saying you felt great at 40mg , before I had the vaccine and was still taking 10mg , I was moving furniture. First time I’d had any energy for years .

Now know I’m going to need at least 20 or more to stop the pain and flu feeling.

I hope you settle once you feel in control and have a plan that’s working. x

💜💃💜

You too, I'm sure things will improve at least a bit in time, I find I'm more inflamed in winter than summer and so in a few months time things will have improved hopefully

So glad I saw your post, I don’t feel as alone. After the second shot, my shoulder and neck were in severe pain and I felt very achy that night, next day I was fine. I too am experiencing today very achy buttock 2 weeks post Pfizer 2nd shot. I can’t even sleep tonight it’s so bad plus top of my thighs and neck pain. Maybe I will try increasing my dose of 4 mg. I feel like I do when in a flare. It’s hard to tell if it’s vaccine related or something else. I am feeling at my wits end, trying to prevent a ulcerative colitis flare as well as I currently have no GI.

Hi Kath,

I had my first dose at the beginning of Feb. Small PMR flare but it disappeared on its own after a few days. Dreadful Crohns flare though which is keeping me awake at night too. Can’t seem to control it.

I can commiserate with you. Dreading the second shot.

Just hope we all have a decent amount of protection against Covid after all this!

Oh no, IBD flares are awful. Yes it is worrisome going to work or in public and not knowing how protected we are.

Are you doing any special diet for the Crohns?

I haven’t needed to in a long while, but I

am back on a low residue diet now and avoiding any food triggers. This is in

attempt to calm it all down.

A good friend gets IBS and is looking at gut health strategies to sort it. I've just read this article which seems to advocate FODMAP at least as an elimination stage, hence was curious as to what works

ncbi.nlm.nih.gov/pmc/articl...

Hi. A friend of mine uses slippery elm for her IBS. She finds it really good. I haven’t tried it for Crohns as until recently, I was sailing along quite nicely! I may yet try it! See the trial results:-

naturalhealth365.com/glutat...

It’s very interesting reading this - I was managing my PMR quite well but been in pain/flare since Covid jab - increased Prec from 14 now back up to 20 and still not much relief - jab was 2 weeks ago and started on 20 mg today.

I'll be eligible to receive my vaccine in about 2 weeks so it's been interesting reading this thread. I wonder if anyone has received the vaccination and not experienced a flare???

I'm seeing my Rheumatologist next Tuesday. I know he will continue to encourage me to go on methotrexate to help reduce Pred (have had PMR for 3 years, currently on 7.5 mg). He will also want me to go on Resindronate for Osteopenia I've developed. I've resisted adding anymore heavy duty meds as I think Prednisone is enough to cope with. But with my vaccination pending I'm wondering if this really would be a bad time to introduce new meds. Any thoughts/advice would be appreciated.

Have you had a dexascan to know it is osteopenia? Do you have the results, the t-scores in particular? I was classed as osteopeneic over 11 years ago when I finally got a diagnosis, I have taken pred since but the values have hardly changed. Osteopenia is a very broad range on the dexascan results from almost normal (-1.0 is normal, -1.1 is classed as osteopenia) to almost osteoporosis (-2.4 is osteopenia, -2.5 is osteoporosis) . If the t-scores are better than -1.6 no intervention is required. That deals with risendronate for now - and I would refuse that anyway until you have had both the vaccine shots. If it is osteopenia you aren't going to crumble in the next few months,

As for the methotrexate - that will not necessarily allow you to reduce much or even any further and to have got to 7.5mg in 3 years is not bad at all. Whatever you are being told, PMR does NOT only last 2 years, only a third of patients get off pred in 2 years, it can take up to just under 6 years for half of patients to be off pred and half of us need pred for longer than that.

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are links to articles about the same study but with different slants.

If you want to hear more from people who have had the vaccine and NOT had a flare (lots) then you would be better starting a new thread as a lot of people won't see your question in the middle of an existing thread - just the way the forum works.

Thanks so much PMRpro for your very prompt, thorough and thoughtful reply. As always, I'm very grateful for your guidance. Yes, I had the dexascan and for 3 areas (sorry I didn't match scores specifically to areas when being told results on the phone) my scores were -1.3, -1.6, and -1.8.

My Rheum is pretty relentless about adding the Methotrexate and I keep putting him off. We've been doing phone appt's but now he wants to see me in person. I will read the articles you've share and hopefully be better prepared for next weeks app't. Thanks again.

Just say NO, to both mtx and risendronate - those are excellent figures, better than mine last September. I expected the local osteoporosis expert to tell me I needed more than just calcium and vit D.Instead she was falling over herself to tell me what wonderful results they were!

Another dexascan in 2 years and in the meantime keep using one of the slowed tapers on the forum to chip away at the pred dose. Without mtx.

That is awesome news about bone density T-score results. Thanks for helping to put things in perspective. Grateful for your advice with this.

I asked my doctor about this today, and he said he didn't think there was a connection, but 24 hours after my covid jab my PMR was flaring, and three weeks on it's no better. I still have a bruise on my arm from the injection site. Reading these posts does make me think that, for some people, there is a connection here. After all, they both work with the immune system.

Which vaccine did you receive?

Logic suggests that ANYTHING that pokes at the immune system COULD theoretically lead to a flare. People develop PMR soon after having a vaccine, stress or illness also lead to flares - they aren't the cause, just the culmination of a series of insults to the immune system. But they do disturb the immune system.

I had the same experience with the Moderna vaccine. I started to experience some new onset pain but not like a PMR flare. I told my rheumatologist about it and she didn't want to guess what was causing the pain even when I said it was more like a flare of reactive arthritis. She wanted to help me figure it out the cause. She didn't want me to take prednisone because that would make it hard to know what was causing the pain. She said it was "possibly" related to the vaccine. I didn't want to say the vaccine caused it because I didn't have any flu-like symptoms.

Two weeks later, I told her I did a 7-6-5-4-3-2-1 prednisone taper over a period of one week. That seemed to help the situation. I was off prednisone for my second vaccine jab that was done yesterday. We will see what happens the second time.

A rheumatologist in the past was highly recommending another type of vaccine. I said that I was reluctant to do it because of flares. He simply said "that can happen" and dropped the subject. I wasn't at all reluctant to get the covid vaccine.

I suspect we know better than our docs on this subject. Regardless of the post vaccine flare, I would still choose the vaccine.💜🙏🏽💜

Astra Zenica

After my first dose of Moderna, I had pain at the injection site for 4 or 5 days and then it moved up to my shoulder. Then both shoulders and knees and I finally realized I was having a flare and upped my prednisone to 5 mg (from 3.5, then 4, then I just went to 5). Better, but not gone. My second shot is in a week, so I think I will stay on the 5 mg until I see what reaction I may have. Whatever it is, I know it is better than contracting Covid so, of course, I'll do it. Thank you all for sharing your experiences here about this. I always feel 'less crazy' when I hear from all of you 😘

PMRGCAuk

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