Newly diagnosed. : Hi i am new here. I had... - PMRGCAuk

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Newly diagnosed.

Buttonshutton profile image

Hi

i am new here. I had stiffness etc from just after my first covid vaccine and have seen someone else mention theirs started after the first one too so so im interested this was mentioned. It was over on another site but lots of replies suggested coming on here instead. I mentioned the vaccine coincidence to my doctor as he insisted im too young for PMR even though im almost 51 and symtoms perfectly match

I suggested the vaccine could be responsible but he didn't think so as seen no one else with it just after. But how do they know when most have had the vaccine now ? Anyway. After ruling out Lupas RA myeloma and scaring me to death. He has put me on steroids. Was on 15mg for four days. Had a review. Whilst the stiffness and movement has improved I've not noticed a drastic improvement so he's upped it to 20mg. Started this yesterday. Expected to be like a gazelle this morning but not much difference. Am I being impatient. Worrying it is something else after all. Everything I read online says it should be like a miracle overnight ??

Any advice would be great. Thank you

111 Replies

It isn’t a miracle overnight for some patients. More like two weeks for the Pred to deal with the build up of inflammation. As you already know 51 is not too young to develop PMR. I wish doctors would revise their view that somehow it is a disease of the over 70s. I don’t think there is definitive proof of a link between the vaccine and PMR. It may just be the final straw among a number of stressors.I would advise you to relax, take care of yourself, pace your activities, move to a very low carb diet, allow your stress levels to normalise and see if Pred can perform its magic. If not, then it is back to the drawing board. Occasionally people have required a start dose of 25 mgs - 30 mgs but it is unusual.

HiThank you so much for your quick reply. I do feel reassured by this. I am in Sheffield funnily enough ! Just expected a miracle from googling. I have been terribly stressed this year with lots of things going on which won't more everyone with. Ah so if I stop worrying for the next week or so then it will have had two weeks to kick in. I've had it since the end of March so maybe a lot of inflammation. The vaccine actually yes could have been the final straw couldn't it. I've been throwing money at chiropractors physios etc as the GP thought it was mechanical, discs and posture etc. Very very busy desk job full time so I went along. Then a family member saw how I couldn't get off the floor one day and asked about symptoms. She said I've had that it's PMR and her description matched exactly. So I suggested to docs etc who said he dismissed it initially due to my age and it started it my legs not the typical shoulders which came quite a while after. Anyway sorry I'm waffling. Thank you for replying

The inflammation has had a long time to build up then. My symptoms were most noticeable in the groin area, making it impossible to get in and out of the bath/bed/chair. There is a characteristic walk - like a penguins’. My shoulders did join in eventually.Of course your doctor has been terrifying you. Your recovery doesn’t depend on not worrying, it just helps. You aren’t waffling, just coming to terms with it. Another beautiful day in dear old Sheffield.

Yes ! Exactly the same. I get up from my desk and walk exactly like that. My inner thighs burn. Then after a few steps goes away. Thank you. I feel loads better already. Yes it is gorgeous today

Mine started in my legs first then spread to my shoulders and arms. Diagnosed 3 1/2years ago and still getting flares. Be kind to yourself and rest when ever you can. I'm currently working as a nurse on an acute ward, but honestly can't say how much more I can take. I was 57 when diagnosed.

Hi. It's reassuring to hear so many also started in their legs as I was wondering if mine fit properly. Not that it's good you have it mind. Oh poor you. That sounds horrific. At least I can sit down to work. Are you able to consider any options Re work at all.

Maybe I could use an electrical wheel chair to get around my patients.

Hi ButtonShutton, same happened to me with the onset of PMR. I had the 2nd pfzir jab and felt like I had been hit by a bus! The pain and stiffness started and it was confirmed my blood inflammation levels were 67! Started on steroids at 15mg had a quick response but took almost a week for most of the pain to go (still have neck pain). I am like you, highly stressed with a job sitting behind a computer most of the day. Spent a fortune on physiotherapy and Osteopath with little effect. I think the vaccine triggered mine and mentioned this to my doctor, she says little is known about the side effects and to report it through the yellow card, which I did..

Down to 9mg on prednisolone now, but want off them as weight is going up and my ankles swell along with being very irritable.

Hi karendeena. I'm pretty convinced was the vaccine. I was walking 6 miles with my dog. Really active. Never been a poorly person. Been lucky in that respect all my life. I was having lots of stress work Is crazy. My dog since died suddenly various other things going on I do believe my body went into overdrive following the vaccine probably trying to mend me!! Oh the irony. Do you mind me asking how long ago you first got PMR. I'm gutted I spent so much like you on physio etc.

Have you been ok continuing with work. So sorry all the questions I just can't afford to not work. Mind you carried on this far !! My bosses are good though. One of them has had pain for years and he had PMR suggested. He believes it doesn't exist it's just something to fall back on when doctors don't know. But it does exist as the symptoms are a particular type!! I didn't argue not worth it. My neck is the bit worst affected currently too. Legs seem to be responding quicker than the top part of my body. Thank you for replying. It's so helpful knowing not alone

Ye my thighs and my neck were affected first, my shoulders a good bit after, the pain and stiffness in my neck lasted over 2 years, and it literally vanished, shoulder pain and stiffness started then 🙈

Crackers isn't it. All the supposed text book stuff I read isn't necessarily so by a long way. I'll

See what the coming weeks bring. Next review with the GP is in mid august

JGBH profile image
JGBH in reply to Buttonshutton

Yes, I too believe the vaccines bring some nasty side effects, although one is not allowed to say so…. I too had much increased pain in my joints, in the groins and in my shoulders and hands too. I had AZ vaccines and the second jab made matters much worse. As already mentioned it’s important to reports all side effects on the yellow card system. After all this is still experimental, being the 4th phase whereby side effects will be recorded. Many people I know have reported similar side effects as well as problems with their heart. A friend who is very healthy suddenly developed something that looked like atrial fibrillation. He saw a top cardiologist privately (couldn’t wait to be seen on the NHS because of Covid) and was put on beta blockers and blood thinners… eventually he stopped using the beta blockers, went back to the cardiologist and had more tests, echocardiogram, etc… and to the cardiologist’s surprise there was no trace of AF…. The cardiologist told him he thought the problem with his heart was a side effect of the vaccine because once AF is diagnosed it just doesn’t disappear…. Yet there was no sign of AF on the second tests. He had AZ too. He is tapering the blood thinners now and the cardiologist will keep on monitoring him. He’s starting to feel much better. So it’s very difficult not to think the vaccines can affect one quite greatly. We shall know more about any problems by the end of 2023 probably. Meanwhile it’s stressful and concerning but the worry of getting Covid is present too. Hope you can improve soon.

Buttonshutton profile image
Buttonshutton in reply to JGBH

Hi. Yes my dad has AF deffo doesn't just go. It only. It's disturbing all these effects. I have reported to the yellow card scheme now. Just hope if the vaccine is responsible for a lot of things that they are only temporary. Thank you. Feel a bit stiff this morning disappointed with that. And the back of my knee hurts now. Maybe I'm looking for stuff !

JGBH profile image
JGBH in reply to Buttonshutton

You are not looking for problems, you know your own body better than anyone else. I am in much pain and feeling so stiff like yourself. Take care.

Buttonshutton profile image
Buttonshutton in reply to JGBH

Sorry you are in pain. I felt ok ish yesterday but more stiffness again today. Sure I need to be patient but keep reading all this fine back to old self stuff and thinking I've got something else instead. Think pred doing something but not enough. I've only been on it a week though and only day three of the upped dosage. Hope you feel better soon

PMRpro profile image
PMRproAmbassador in reply to JGBH

To be fair - most of the time you could do tests on me that wouldn't show AF, If you have the paroxysmal variety, everything can look totally normal inbetween episodes. The vaccine didn't make mine worse - but a flare of PMR normally does since it was almost certainly the autoimmune part of PMR that caused mine in the first place.

JGBH profile image
JGBH in reply to PMRpro

You might not be as fit and healthy as my friend (with due respect, not being rude)/. He’s a retired airline pilot who has always been very fit, pilots have thorough medicals every 6 months. He continued having these medicals once retired because he flies with friends as a hobby (small planes now!). He’s so fit, slim, cycles and walks miles.,,, and this happened after the second AZ jab. He felt so ill, also the joints in his hands swelled up and were painful for 2 weeks. So, rationally it looks like these effects are due to the jab. Even the cardiologist said he and his colleagues felt the vaccine caused the side effects and that it will take a while longer to really find out what is happening. It makes sense since we’re going trough the 4th and final phase.Noticing facts and recording them is a important phase of scientific research.

We don’t know enough about those vaccines yet. Time will tell.

PMRpro profile image
PMRproAmbassador in reply to JGBH

PMR can be triggered by a wide variety of things - including the flu or shingles vaccines. Previous health and fitness has little to do with developing an autoimmune disorder since I suspect this guy could have given your friend a run for his money:

healthunlocked.com/user/Ski...

He has since climbed Annapurna IV a couple of years ago - there is a post about it.

Venus Williams also has an autoimmune disorder - showing fitness doesn't have that much to contribute ...

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Wow ! Just read that. And my boss says polymyalgia doesn't exist !!

And your boss is qualified to say that because...?

Reckons because the literal translation is many muscle aches so it's just something to say when don't have a clue. But we know it's a SPECIFIC set of aches/stiffness/areas so of course it does. They were trying to be helpful as in pursue diagnosis but it wasn't very helpful really

No, not very helpful really!

Perhaps I shouldn't have written it. Probably going to incense many. The condition needs to be more "out there" for sure

Problem is we all "look so well". I'm sure they'll learn a bit more about it over the coming months! 😉

I'm sure they will. I can moan for England ! 🤯

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

What an idiot!!!! The name of the disease often has little to do with what the illness is! But I bet he has fibromyalgia in the back of his mind too - but that is also a "real" disease. Being a nasty person deep down - I do hope your dear Boss gets a nice dose of PMR and then he can offer an opinion as to whether it is real or not when he's sitting on the loo wondering if his arms are long enough to reach ;)

Buttonshutton profile image
Buttonshutton in reply to PMRpro

🤣🤣

JGBH profile image
JGBH in reply to PMRpro

Interesting read. However in a recent post he also mentioned reading about many people who have been “double vaccinated “ AND still got covid. It could be people like us who have many autoimmune diseases and using strong immunosuppressants are not actually helped by such vaccines. Same with the flu jab. It makes complete sense. The weaker the immune system the less likely we are protected from anything indeed. However, I have heard reports of people who aren’t immunosuppressed and who still got Covid post second jab. We are still finding out about the vaccines. Only Time will tell. Please note I wasn’t referring to PMR being triggered by the vaccines (although quite a few people have experienced the side effects and hopefully have reported them to the yellow card scheme), I was stipulating they can affect the heart and circulation generally (we know about blood clots already).

My friend doesn’t have any autoimmune disease, in fact he has never been ill and yet suffered serious heart problems after his second jab. He consulted a respected cardiologist (not a charlatan) and saw all his tests results.He’s highly intelligent and isn’t the type to get fooled either. His father was a cardiologist. From the results there appeared to be signs of AF. A while later, after second tests there were no AF signs. This cardiologist is working at a top hospital (but he saw him privately to expedite the consultation as he was seriously unwell) and his colleagues have seen and noted these odd symptoms and are recording them as they should. Also my friend’s fingers became very swollen and painful for 2 weeks post second jab. He doesn’t even have osteoarthritis.

No point in denying what’s happening. It’s most important to record any side effects so we understand clearly what is or is not happening. This is the scientific approach.

Having several autoimmune diseases I really know how they affect one’s fitness! I was incredibly active and fit prior to being diagnosed with RA, hypothyroidism, Sjogren’s, Raynauld’s, uveitis etc. To say they don’t affect fitness is not really true. All the people I know who have serious autoimmune diseases have seen their fitness diminished drastically in some cases.

I believe it is always prudent to see all sides to a situation.

PMRpro profile image
PMRproAmbassador in reply to JGBH

I don't think I have said that they don't affect fitness - I said being fit does not protect you from autoimmune disease. You also don't need to tell me about scientific process - I've worked in science all my life.There are a lot of reasons for swollen fingers - not just OA. In fact, autoimmune disease is more likely to cause it. You can develop autoimmune disease from one day to the next - and something triggers it. There are many causes - including vaccines, not just the Covid vaccines and a whole range of illnesses that may upset the immune system and make it deranged.

JGBH profile image
JGBH in reply to PMRpro

Well, yes should my friend have suddenly developed an autoimmune disease it would then have been triggered by the vaccines. But he doesn’t have any autoimmune disease. However, he developed serious heart problems, it’s exactly what the cardiologist firmly believes and he and his colleagues will follow up all similar cases they find. From my experience autoimmune diseases take a while before being diagnosed so one never really knows when the process started. It took quite a few years for my RA to be diagnosed, when it was rather obvious but I knew before the diagnosis was made. Of course autoimmune diseases can be triggered by anything, stress, viruses, bacteria and Covid. But my friend hasn’t suddenly developed an autoimmune disease but serious heart problems following the second jab.

I find it somewhat odd you find it difficult to accept the vaccines can cause such side effects. After all, we’re only going through phase 4 therefore nobody knows how they may or may not affect people. Not even the actual scientists who worked on these vaccines. They might have an idea but that’s not evidence, that will come in a year or so, post inoculation. Also we are all different so people will react differently as for anything else.

Why are you getting very defensive, keeping on saying you worked all your life in science. Were you you directly involved in scientific research, and at what level? Am sure you would agree that doesn’t mean one knows everything about all matters scientific.

Can we not all express what we find in trying to understand what is happening. Personally I don’t feel this needs to turn into a battlefield.

That has never been my intention. Just reporting side effects is important, there needs to be clarity. Good as well as bad is important to have a balanced situation.

Frankly I have now exhausted this topic. We’re both entitled to our opinions as is anyone else who can apply critical thinking. It’s not a question of downgrading the vaccines, just finding the truth eventually.

PMRpro profile image
PMRproAmbassador in reply to JGBH

I am NOT saying that the vaccines don't cause all sorts of things - and if anyone is defensive I'd say it is you. I merely attempt to look at all sides.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, and welcome,

Firstly, don’t believe everything you read on t’internet about your illness or your medication (good or bad) - or everything the doctor says about PMR.

Gazelle? maybe, but give it a couple of weeks at least……and maybe have a look at this for a bit more info -

healthunlocked.com/pmrgcauk...

And have a browse through the FAQs - healthunlocked.com/pmrgcauk...

HiThank you.

The gazelle reference was because my friend stated she took pred and the next day jumped out of bed like one ! Guess I expected the same. I know. Dr google can be very unwise. Glad I've found this instead.

Thank you so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Buttonshutton

Yes…we are slightly more realistic!😉…some are like your friend, but many do take a bit longer…..depends (like so many things) on the individual.

Many feel like a plodding cart horse pre diagnosis, pre meds, so aiming for a gazelle is okay….but just remember they sometimes have a short lifespan…..better perhaps to go for something in-between….and more sustainable. 😊

Haha. That made me laugh. Maybe a tortoise is preferable. Much longer lifespan. Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Buttonshutton

You will see a references to hare and tortoise when you start reducing—-and tortoise is better! But that’s for the future.

It was the third morning I got out of bed and was puttering around and suddenly realized I had not had to plan every movement in order to get up. For several months it had been a painful four-step process. Not a gazelle, but I was happy enough!

nickvah profile image
nickvah in reply to HeronNS

I've done that today. Got up and realised. Oh. I've just got up without rocking to get momentum ! Yes gazelles are over rated!

Just read your fantastic post with all the information. Brilliant thank you for taking the time. I am going to print it off

PMRpro profile image
PMRproAmbassador

It isn't always a miracle overnight - took 6 hours for me and I know one or two others with a similar experience but we are actually quite unusual. A week or more is more likely. And it only happens if the dose is high enough to start with. It also helps if you do your part - i.e. not trying to do your normal level of activity because you feel better.

The guidelines worldwide say over 50 - and you can have it younger just it isn't very common. Or maybe it is but doctors like yours refuse to see it. I was still 51 when the symptoms started, nearly 57 when it was diagnosed.

There is no single cause of PMR - it is a culmination of events that have stressed the immune system over the years and finally one thing tips it over the edge and the immune system goes haywire, unable to recognise the body as self and attacks body tissues, causing an autoimmne condition. Which label you get depends on the tissues involved and the symptoms caused. That final straw can be anything - emotional or physical stress, illness, injury, environmental or chemical, pharmaceutical, a drug or a vaccine. It happens after flu or shingles jabs too.

And he should KNOW that it is possible - we have several people on the forum who are newly diagnosed since Covid or the vaccine and many of us flared post vaccine. It has been noted by a few doctors that Long Covid has a lot in common with autoimmune disoders including PMR and GCA. Of course - it is quite likely he hasn't seen enough of his patients to know ..

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Hi. This is great all the support so quickly ! Thank you. I've had an awful year as has everyone I know but honestly a lot of events. I reckon yes it's stress and then the final straw. Don't get me wrong. I'm not anti vaccine in fact I was doing my best to get it. Does make you wonder though.

Interesting you were the same age as me too.

So sorry it took you so long to be diagnosed. To be fair my doctor has been very thorough but in the process frightened me which added to the stress amd I'm the worlds greatest over thinker as it is !!

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

One thing you will always find on this forum is support - although we also tell it as it is and will tell you when we think you are wrong! So don't run off in a huff when we do ;)

Buttonshutton profile image
Buttonshutton in reply to PMRpro

I don't mind that. With my wild imagination it's good to be told I'm wrong 🤣

I developed PMR after travel vaccines in 2019 and now have been diagnosed with GCA following 2nd Pfizer. It was my normal rheumatologist who made the link to the PMR and vaccine and has seen plenty of examples to believe there is a link. Interestingly none of the doctors (6) I saw in my recent 6 day hospital stay when diagnosed with GCA questioned when I said I had the symptoms following the Pfizer vaccine. The meds take a few days to 'kick in'.

Hi SusanThank you for replying.

If this doesn't work I'm being referred to a rheumatologist so I'll be asking out of interest their opinions Re the vaccine etc if this happens.

Can't be a coincidence can it. Sorry to hear you got GCA. Hope you are ok and it's under control. I had the AZ one.

Thank you, at least caught early before no damage to my eye. To be fair to the vaccines it is not their fault it is our weird immune response, that could happen with any viruses.

Yes agreed and glad they caught you in time

Songbird69 profile image
Songbird69 in reply to Susan1705

Hi. I have had three admissions toHospital since my Covid vaccination. Not with the PMR/GCA but for a bad Crohns flare.

Various consultants said they were not surprised when I insisted that this all happened because of the Covid jabs, as they have seen many other similar cases.

As I now know that I have little protection against Covid, I wish I hadn’t had the jabs. But hindsight is a wonderful thing!

Totally believe in the link .....

Hi. I think there is something linked for sure. A couple of physios told me they had seen an increase of people complaining of muscle pain since the jab. My friend has Chrohns and colitis but was fine. Think she had Pfizer. You just never know though do you. I hope you are ok now

Luck of the draw .....

PMRpro profile image
PMRproAmbassador in reply to Songbird69

But you don't know how much protection you have - and the chances are there is some. Which is far better than none ...

Hello Buttons. Like you , my PMR came on fiercely after the first Pfizer vaccination. And my doctor still thinks it was a coincidence. We are not alone - several other contributors to this forum report similar experiences. Though it is also true that it is likely just the last straw in a series of stresses pushing our bodies towards this response.If it turns out that you do definitely have PMR, you should report to the Yellow Card Scheme which collates adverse reactions to all drugs, not just the Covid vaccine. If you don't know anything about this (I didn't) you can find out more on Google and report online. It is very easy. And I believe it is important to do so. One more little chore to tackle, but it won't take long! Then relax.....

Karendeena profile image
Karendeena in reply to bussell

Same happened with me Bussell, after the 2nd pfzir vaccine. I too have reported through the yellow card. My doctor says 'It's a possibility' but not enough is known about the vaccine

Hi. Thank you I am going to report to the yellow card scheme as you suggest. Agree very important. I almost did it yesterday then thought perhaps should hang fire to ensue deffo this. But I will be doing it. I strongly suspect in a few years time it will be very much a recognised side effect. All be it from a last straw point of view. I tried the 2am steroid taking today to combat the 4am new inflammation as many have suggested on here. It's feeling tons better than usually does in the morning so I'm going to continue that. Thank you amd hope you are still feeling ok. Wish I was one of the instants !! 😊

My PMR started 3 days after my first AZ vaccine in late January. Seven painful weeks later my GP came up with a diagnosis of PMR and the 15mg of Pred worked pretty quickly for me. I identified with the person above who mentioned realising that it was no longer necessary to rock back and forth to gain sufficient momentum to get out of bed! Do report via the Yellow card scheme: yellowcard.mhra.gov.uk/

Yep. Today not rocked to get out of my garden chair ! It's a strange old disease isn't it

Trainy profile image
Trainy in reply to Buttonshutton

Hi, my PMR started week after first az vaccine. Just tiredness after 2nd jab. Was initially reluctant to have it. Started 15mg, now on 10 via 12.5 taken at 2am daily, thanks to the guidance from the group .Now just a routine. Didn't take it until 4.30am one day last week. Oh, what a reminder about can't get out of bed. Pain an intermittent 1/10 at each reduction for first week. Walking like a penguin comment made me laugh. That was me 2 months ago and rocking to get off the sofa. I've been lucky, apart from getting PMR, with quick diagnosis and good response to pred(so far).

Buttonshutton profile image
Buttonshutton in reply to Trainy

Hi. The vaccine again. Does make you think. I've only done the 2am meds once so far last night but I've felt almost normal today. So going to continue. Interesting you were back to cant get out of bed after the 4.30am. 2am isn't always ideal though. Well if ever ! Both rocking comments were me. I forgot I'd joined health unlocked under nickvah when I did the couch 5k. Going to delete that profile or will get confusing. Confused enough without talking to myself. I completely related to the penguin thing too. Glad you are doing ok

I would say in my case it was instant ! i felt fantastic within hours of taking pred ! but thats me ! Good luck i hope you sort it out . Everyone is different ! x

Buttonshutton profile image
Buttonshutton in reply to Viv54

Hi thank you. I am glad you were one of the luckier ones. I feelLoads better today from a 2am dose

Viv54 profile image
Viv54 in reply to Buttonshutton

Great to hear 😊

Like you my "suspected" (I have no doubt but Rheumy is yet to be convinced) PMR, which almost crippled me, started shortly after receiving my first dose of vaccine but, as others have suggested, that could have been merely coincidental or the straw that broke the camel. I was initially prescribed the, one size fits all, 15mg Pred, only after blood tests, which had little to no effect. Increased to 20mg which did do the trick but it did take quite a few days to kick in.

Hi. Oh you sound identical to me. I was only given pred after bloods too. In fact when I called my doctor after speaking to my friend who told me it was likely PMR, to ask if another person joining us in Cornwall could bring me a prescription for steroids he said can you come back from holiday ASAP to take bloods first rule out other things!! Panic stations from me. But wouldn't have been fair to drag my family home so I waited until back. To be fair to the doctor as soon as he took the bloods he gave me a prescription and explained that had steroids got into my system the blood wouldn't have been true which makes perfect sense. Also he wasn't satisfied with my yes it's better but .. answer on follow up so he said it's not been dramatic? No what should I expect? He said well people report a new lease of lode (like my friend) so told me to up it. I then expected a miracle. Hopefully like you these will kick in over the next few days. As I say today I feel better but by no means perfect but would say the 75% improvement has maybe happened. Hard to put percentages to it isn't it though. I'm asked pain 1 to 10 by the doctors but mood plays a part. Some days a 5 would be 10 and vice Versa? Blimey I'm going on again. Sorry. Initially I was relieved nothing too sinister happening with me. Then yesterday afternoon I was feeling a little down as it sank in I have a disease. Worrying about being tired to work. But been working all along undiagnosed with no pain relief so sure I'll be ok. I need to put big girl pants on. I have friends with much worse autoimmune conditions which they won't have wanted either. so I need to belt up and get on with it. It's just tiresome being in pain isn't it. Thank you for taking the time to reply (amd read this essay)

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

The use of pain scores is being a bone of contention in a PMR research group I am part of. I pointed out that all day low level pain is horrendous - far worse than half an hour of 10/10 pain that then goes away. But none of the scoring scales really takes that into account for research purposes.

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Exactly that ! Plus as I say if feeling ok in head one day could say oh it's at 2 when another day if down the same pain could be 10. Sometimes I just say anything to Answer the question ! Thank god for people like you pointing these things out. Common sense should dictate that shouldn't it. Guess one of those if not experiencing pain no way of realising how horrible it is.

I believe that the Vaxx made my PMR much worse - others on this site have said that the adverse effects can persist for a number of weeks, as was the case with me. Pred has been very good for me, but the 'side-effect' from Vaxx was not improved by upping the steroid dose, unfortunately, even at 30 mgs. My Rheum is as clueless as most that I read about on this site.. For example, I was on 17.5 mgs. Rheum said I had to be off it asap because of side-effects. Why? It's pretty well the only drug they have for PMR and I was put on it by a Rheumatologist. Why the sudden panic? He outlined the following scheme - reduce to 15 mgs immediately; 10 days later reduce to 10 mgs; 10 days later reduce to 5 mgs. Agony after I got to 10 mgs, Back up to 12.5mgs and going v v slowly. I won't be calling him back. Moral - trust yourself, your body, and this site. Expect that the majority (not all) of Rheumatologists are only there for presecriptions and tests, not treatment advice. That sounds a bit brutal, but I think I won't be alone when I say that most of our consultations with Drs is like reversing the roles, where we are educating an obstinate pupil!

Hi. I am sorry to hear that. It's certainly a learning curve isn't it. And I'm learning that we seem to have to work with the doctors Re dosages and are put in quite a lot of control over doseage rather than the docs deciding fully. It's clearly a little known about condition for instance. I bet non of them know about the 2am thing ! This site and the people on it are going to be invaluable. In fact it shows how people go searching and end up here as given little information in the first place. Hope you feel better soon.

thanks - I am improved actually! Vaxx side effects have faded largely. But I am irritated by Doctors, to whom we go in some desperation, and are disinterested, hidebound, out of date and often woefully unable to help. Not all obviously and I will get over it! They should be made to read this wonderful academic paper that informed persons on this site referred me to - rcpe.ac.uk/sites/default/fi...

PMRpro profile image
PMRproAmbassador in reply to Predderman2020

Obviously hasn't got the slightest idea about how PMR works has he!!!! I don't understand why they bother to diagnose and intiate the only management medication there is only to stop it after a short time. PMR is a chronic illness ...

Thanks, PmrPro. T

Just to reassure you, I joined this group because my partner was finally diagnosed after his 1st AZ vaccine. Two days on steroids and he was like a new man, and now gradually reducing. However, he was reluctant to have 2nd jab. In the event, he has it after a consultation with a doctor in hospital last Sunday and has been absolutely FINE! Just general fatigue, the same as most people, but it only lasted a couple of days. I just think if he didn’t have the jab, what would happen if he had COVID? As others have said, he’s felt he’s had this for a long time but having the jab just brought it to a head.

Buttonshutton profile image
Buttonshutton in reply to PMRZ

Hi there. Thank you. I know. I've been saying not having a booster etc. But I suspect any vaccine involvement in PMR starting or flaring happens once to a person. Seen lots about people being fine after it and as you say Covid potentially much worse. I'm not going down the anti vac route I just feel it's more than a coincidence especially now reading. Mine started a week after the first AZ. (26 March) In fact I didn't immediately connect it because like most I imagine I was looking for a reaction to the jab in the days following and in fact was bragging how I was fine no reacting didn't even feel the needle la la. Then this started and I left it a month thinking pulled something as was only affecting legs at that point. Didn't go to the docs till 30 April. When asked to pin point when started I couldn't. It was only looking back on messages for when I started moaning to people about this weird pain that i realised was a few days after the jab. Nothing at all before in fact was running a bit before had started couch to 5k again. I agree. It's perhaps been sat waiting for a trigger and the vaccine provided it. Thank you. It's good to know we should be ok continuing with vaccines. Glad he's ok now too and responding well

GrandmaPirate profile image
GrandmaPirate in reply to PMRZ

I was diagnosed with PMR in April 2020, started on 20 mg pred and reduced dosage with 1 mg each 4 was. PMR was well controlled. I got first AZ vaccine injection in April 2021 just when tapering off from 2mg to 1 mg pred. PMR flared up after AZ and rheumy allowed me by phone to go up to 2 mg again but symptoms remained. Couldn't take anything out of my kitchen cupboards anymore. Had appointment with rheumy on 15 June, was allowed to go up to 6mg pred.again. it took 8 days of pred.6mg/d before the active grandma was back to normal more or less. I was allowed to stay on 6 mg until 4 days after second AZ injection on 5 July. No fever this time, no flare up of PMR. I am now already 4 days on 4 mg.pred. Walked 10 km with dog yesterday, cycled 1 hr, did 40 minutes of pilates. PMR is under control and I feel better protected against covid. Less stress, so much better for my immune system.

Thats all great news you sound really active. Thank you. Gives lots of Hope

I had no adverse reaction after my 2nd AZ vax in March, 10 weeks after the first one in Jan which had resulted in PMR. By that week in March I was on 12.5mg of Pred.

Hi Buttonshutton. My experience may help (I'll try and keep it succinct).

Mild symptoms early May

11 May second covid jab.

11 May - 28 May. Symptoms get worse. Get to 9 and a half on the Richter scale. Can't walk. Can't sleep. Can't move really without excruciating pain.

28 May. Diagnosed PMR and given 15 mg Pred. No relief

6 June. CRP marker 98.

12 June. Pred increased to 20 mg. No relief for first couple of days and had a blackout episode. However after a couple of days some relief occurred but not for whole day.

18 June. CRP 106. Pred increased to 25 mg. Relief at last. Still some residual symptoms shoulders, upper arms and hands (tingly palms), but all generally OK.

24 June. CRP down to 22

2 July. CRP down to 13

3 July. Pred increased to 30 mg. GP wanted to try and get rid of residual symptoms. Not much effect though.

16 July CRP down to 1!! Pred reduced to 27.5 mg. 20 mg at between 4 and 5 a.m and 7.5 mg between 9 and 10 p.m. No untoward effects of the reduction so far. Taken with a drink of full fat yoghurt and milk. Also taking 15 mg Lanzaprazole (although thinking of stopping this) and 500 mg Glucophage (now diabetic because of the steroids but my markers may be coming down).

My PV marker has also come down from 2.06 beginning of June to 1.66 now which is in the normal range.

The thing to note for me was that my GP (who I think is great and I do feel that we are on my PMR journey together) was reluctant to increase my Pred from 20 mg because the guidelines say 15 - 20 mg but I had the feeling that as I was getting partial relief for most of the day at 20 mg, then 25 mg would be even better.

I am now walking five miles (more or less daily) and have far more energy. Not resumed golf or gym yet and in my mind have written the rest of the year off for these activities but am just glad to get back to half normal. I have kept a daily "diary" of my journey and found it extremely useful (especially for writhing this piece)!

Finally I would not be where I am today without the knowledge gleaned from all of the Sages on this Forum. Thanks to one and all

Hope this helps.

LBM1953

HiThank you. Excellent bullet points. Maybe I should try that.

Really helpful. Another confirmation I am not at all unusual in the small response to the 15mg.

That's hugely reassuring. Sorry you got the diabetes but hopefully it's temporary as going down. I don't know what my inflammation markers are. He said they were borderline high. I had my second jab in May too. But can't say things got worse I don't think. Very hard to pinpoint. A diary is an excellent idea. I'm going to do the same.

I have been prescribed lanzaprole too and the calcium/vit D tablets and alendronic acid which am reluctant to take.

So if I have to go up from 20mg I shouldn't worry too much and the fact you are walking so far again is great news.

I think like you my GP and I will learn together and if it helps others at the younger end be diagnosed early that's a good thing. He has been good. He admitted didn't initially think could be due to my age etc. They are thorough at our surgery. Side effects of that is they scare you but better than something being left undiagnosed I guess.

Totally agree Re this forum. Thank you so much for all this info

PMRpro profile image
PMRproAmbassador in reply to LBM1953

The most recent Guidelines actually say lowest effective dose in the range 12.5-25mg, exceptionally 30mg. They realised 15-20mg might not be enough to get the speedy response - if it is something else the response tends to be slowe.

ard.bmj.com/content/74/10/1799

Have a scroll through to find the summary box. Maybe your GP would be interested in it

I had my AZ vaccine on a Monday and by Wednesday I started with pain and stiffness in my legs, feet ankles and lower back (I have never really had many problems in my shoulders and arms!) It took two months to be diagnosed, by which time I couldn’t get out of bed without help, get in the bath or up and down stairs.

Steroids made me feel better straight away, but I felt as high as a kite and had to reduce the dose in order to be able to sleep. I am now reducing and can’t sleep because the pain is coming back! So steroids act differently with different people and need managing carefully.

My GP has been great and accepted that the vaccine had triggered PMR, along with a difficult couple of years. I reported on the yellow card scheme, where there are sometimes 40 cases reported a week. So just imagine how many there really are, given people don’t report symptoms or just don’t know about the yellow card scheme.

Good luck with your diagnosis and treatment.

Hi. Thank you. It does make you wonder doesn't it how many others there are. I almost got stuck in the bath last Friday. Stupidly decided to have one whilst partner away on a stag do. Was thinking I'm going to be found in the bath in three days time 🤣 Christ knows how I got out. Had to hang on to my sense of humour and turn round and somehow got up on my knees.

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

I last had a bath 15 years ago ... Showers rule!

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Learned that the hard way!

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

We try to warn people - it's very embarrassing when you locked the bathroom door and are stuck in the bath ... Even more so if you have to get the paramedics to dig you out ;)

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Bet that's happened few times

Honestly, Steriods work (for me anyway) within hours! Also, I highly recommend eating fresh pitted cherries or Cherry Juice. It (for me again anyway) reduces aches and inflammation!

Buttonshutton profile image
Buttonshutton in reply to

Ooh thank you. I know someone with gout swears by cherry juice. I'll get some

in reply to Buttonshutton

I wish you the best of luck. I've had RA for about 25 years and tried nearly everything for relief. Cherries help! Maybe only a bit and temporary, but they do help!

Buttonshutton profile image
Buttonshutton in reply to

Thank you. You too

Well I certainly wasn’t like a gazelle within hours. Having started pred on a Tuesday I suddenly realised I’d actually managed to put my pants on standing up on the Friday for the first time in months. Small step but good enough for me! Manage your expectations and you’ll feel better for it in the long run. Not everyone can be a gazelle!

It's the little things isn't it. Fastened my bra this morning ! Thank you !

I was a lucky one I guess. I started at 20mg and was somewhat better within 6 hours. 80% better within 24 hours. It did take about a month to be pain free though. I was 48 when I was diagnosed. While I had it before Covid, I had a major flare after my jab. I would say give it a bit more time but if the steroids really aren’t helping after a month, consider that it may be something else?

Thank you. Just reading the book recommended on here by Kate Gilbert and she advises anyone under 55 to push for rheumatology referral just in case it's something else like vasculitis.

I certainly did not recover overnight it took months to see any improvement but I did suffer bad side affects from steroids. Everyone is different and recovery is not the same for everyone. As you will learn on this site you need to be patient with progress and listen to your body.

Buttonshutton profile image
Buttonshutton in reply to Liby57

Hi. Thank you for your message. Patience is not a virtue of mine but realising gonna gave to get some.

Liby57 profile image
Liby57 in reply to Buttonshutton

You will.

Thank you for all that you've shared with us. I too started PMR with acute pains in the legs which were initially ascribed to a (non-existent) hernia. I started on 15 mg.pred. in August 2020, and am now down to 4 1/2. You mentioned Lansaprozole; when I had a DEXA scan the other week the radiologist recommended that I should take it only when I needed it, rather than regularly. I was delighted to comply, and have not actually taken any for the last month.

Hi. Yes my legs were put down to a disc initially. I kept saying but it's completely symmetrical. Couldn't understand it. Same pain same place same time both sides. Had hamstring issues too. I think that may have been a separate issue tho as that went during chiropractic sessions. But the inner thighs didn't then hips started followed by shoulders. Thank you for the tip Re lansaprozole

I experience all of the PMR type pains and stiffness (hips, shoulders, neck, wrists and fingers) five years prior to awakening to all of them at once a year ago. Those original pains were caused from taking Simvistatin over a three year period. So, for what it’s worth, if you are taking any kind of statin drug, you should consider talking to your physician about it.

I read that somewhere else today too. Fortunately I'm not. But thank you

Ye that's where my PMR started in my thighs, neck, didn't have it in shoulders, for a long time, but went on to get GCAI started off on 20mg and it was like a miracle, one day I couldn't get out of the bed and the next day i could.

What vaccine did you get?

Hope medication works for you.

Hi. I had the AZ vaccine. Thank you. Feel loads better today. But my back hurts now so I've come to bed. It's been a weekend of much learning and support. Thank you to you all

I'm allergic to polyethylene glycol it's in Pfizer, so I seen a few post one here where people had flares in condition, so I have chosen not to get vaccine, I've had this condition for over 6 years, and I'm trying to get off steriods, I think I might have been on15mg but it was the 20mg that did it, take care

Thank you. On day three of 20mg. Yesterday felt better today little stiffer disappointed but I need to give it chance I know. Hope you get off them soon thank you for your message. You take care too

Hi this is not obviously related to comments about link between pmr and the vaccine but could be . I developed pmr at the end of last year and am gradually reducing prednisone going to do it by 0.5 each month now from current 8.5 as gp asked me to to reduce by a larger amount and symptoms returned so i increased it . I have heard of quite a few people that I know or friends of friend who have developed pmr in the last year and I do wonder if there is any research being done about a link to covid .

I didn't have any symptoms of covid and there was no testing early on in the pandemic so I don't know if i had it mildly and if so whether it could trigger pmr linked to its effect on the immune system . If so then I guess it may well be that in some folk having the vaccine could trigger pmr . I am no doctor or researcher but find it interesting . I guess there is a lot more learn about this nasty virus and its effect on the immune system. Anyway take care everyone .

PMRpro profile image
PMRproAmbassador in reply to Mofred

There is certainly some thought about the fact that Long Covid can feature many characteristics of autoimmune disorders including PMR. It has been known for years that a viral infection can trigger a lot of long term conditions - remember Yuppy Flu, now called ME/CFS? And post-viral syndrome is more non-specific but there.

There is a whole range of things that can be the final straw that breaks the immune systems back and sends it haywire after an accumulation of stresses on the immune system throughout your life. It can equally be the flu or shingles shot, flu or shingles themselves, an accident, bereavement, illness or environmental or chemical triggers. The Covid vaccine - or Covid - are candidates like any other.

Buttonshutton profile image
Buttonshutton in reply to Mofred

Hi. Guess we won't know for a good few years. But I wouldn't be surprised in the least. So many people are mentioning it. I also think it's odd PMR isn't more well known. The amount of people who are saying to me what's that never heard of it.. it is interesting I agree. Just wish wasn't appearing to be a thing

This is so useful reading all this! I’ve been on steroids 15mg for 5 days, I do feel better but still very tired, sound like I need to wait for blood test in 10 days?

I can't decide how much better I am on the 20mg. Keep telling myself to be patient. Sunday felt really good compared to how I've been. Then yesterday and today quite stiff again. Not sure if it's usual. I've got another blood test mid August think to see if the inflammations gone down. But if you don't feel it's working ask to go to 20mg. I did after four days on 15mg. Hoping kicks in properly this next week. Definitely easier but have to admit am disappointed. I need to stop concentrating on the miracle stories and focus on those like me who aren't so lucky I guess. It is useful I had no idea !

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

Did you do more on the days you felt better? If so - that could well be why. Pred doesn't mean you can go back to pre-PMR activities, the disease is still there. Like feeling a bit better having taken some ibuprofen when you have flu - you aren't cured!

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Hi no. It was on Sunday I felt better. I did nothing but sit in the garden. Then woke up on Monday feeling stiff again and the same today. I was happy on Sunday I felt better and enjoyed reading my book in the garden instead of worrying as usual about is it something else ...

I also have had PMR symptoms post AZ vaccine. I had more than a week of noticeable fatigue following both doses and didnt feel normal for a month or so

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