rheumyLetter mentioning the COVID vaccine

[Buttonshutton]

Thought this was quite interesting on the bottom of a lengthy copy of a letter from my rheumatologist to my GP

I've said all along I was fine till had the jab but I wonder what these other inflammation conditions are.

[DorsetLady PMRGCAuk volunteer]

Well yes it would have been useful to mention what they might be...but it is notoriously difficult to be precise sometimes without further tests, which is why she wants you to reduce quickly...good luck with that... and please keep us informed.

[Buttonshutton in reply to DorsetLady]

Hi. I will do. I do understand it's difficult. I suspect much will come to light in years to come re this period in time

[cycli]

This is not consultation but didactic decision making . You are key whatever he may speculate. Despite what he thinks you are not his experiment to put into pain just so he can test his theories. You feel real pain and TELL him. When he comes off his high horse(hard I hope) you can then discuss in a collegiate atmosphere how you tackle the issue without causing further pain. Then discuss the full range of results, what they mean, what they imply and what he thinks you should be tested for , if anything ekse, and what the implications of that test are and its possible outcomes. You are fully entitled to be in on HIS thinking.

[Buttonshutton in reply to cycli]

Hi. Love your pep talks.. Can you come with me. 😀

[SnazzyD in reply to cycli]

Well said, I’ve seen too many people subjected to suffering because the doc is going on a mental academic jolly. At the very least there should be cooperation with the patient to explain lines of reasoning, hunches and evidence as it stands. Most people can put up with suffering if they know why they have to be subjected to it. I do remember though a Rheumy saying to me that the reason they weren’t going through potential diagnoses at the time was because there were so many possibilities to rule out. However, they weren’t withholding pain relieving treatment to do it, it was just blood tests and no radiation was involved so there was no hurry or implications.

[PMRpro Ambassador in reply to cycli]

I don't think it is that unreasonable - it really isn't uncommon for a GP to make a diagnosis of PMR in response to a patient displaying polymyalgic symptoms without investigating as much as they should. I think piglette said the other day up to a third of PMR diagnoses aren't in fact PMR. Some are more serious but could be treated well if the right diagnosis were made so it can be very important. Unfortunately, there are tests that pred interferes with - and it also reduces inflammation that MIGHT be typical of a different diagnosis if it were apparent.

[Buttonshutton in reply to PMRpro]

I do understand this reasoning. Just the thought of the pain. I find the vaccine theory very interesting as I do believe it triggered mine. Been dismissed so far. So nice to see someone reputable saying it is becoming recognised as a possibility

[PMRpro Ambassador in reply to Buttonshutton]

I know - once you have tried pred and it works there is great reluctance to go backwards! I had full on PMR for 5 years before I got offered pred which works amazingly and I have few adverse effects now, all very livable with. I tried methotrexate - and felt worse on it than I did with unmanaged PMR!!

PMR can be triggered by other vaccines too - as well as lot of other things. Probably the biggest concern here is that it isn't "just" PMR that has been triggered but something else.

[Buttonshutton in reply to PMRpro]

5 years. That must have been horrible. It's the not knowing with me. Can't stand my over thinking

[Flivoless in reply to Buttonshutton]

I remain convinced that my 1st Jab was the cause of my PMR. Just too much of a coincidence and I cannot think of anything else I might have done to trigger it.

[Buttonshutton in reply to Flivoless]

Me too

[agingfeminist in reply to Flivoless]

There doesn't have to be an obvious trigger. Many of us get very suddenly whacked by PMR despite eating well and having a very healthy lifestyle. It chooses its moment. If there was a last straw, mine might have been transient exposure to chicken pox 6 months before I was demolished by PMR...though I never had chicken pox/shingles symptoms. I do have the feeling that PMR might be building up over decades...a bit like cancer or dementia.

[2013mayo in reply to agingfeminist]

Hi,I’m convinced mine started with shingles (3 times, ocular) low sodium, severe headaches, I had these for years before being diagnosed with GCA, maybe I had this all along and no one took any notice ? Maybe it would of stopped me having permanent blurred vision ?🤔🙁

Xx

[PMRpro Ambassador]

I know other forums have had people saying their apparently rheumatological symptoms appear post vaccine.

[piglette]

I did hear some PMR consultant say recently that the number of cases of PMR seem to have increased a lot since the Covid vaccine came on the scene. Perhaps it just triggers something. Being offered a PET scan is unusual as they are EXPENSIVE! So it seems he cares.

[Ballywilliam]

Interesting and frustrating for you . I feel your pain! To share my story post vaccine in May - I developed chest pain 24 hours after and ended up in Hosp for almost weeks myocarditis / pericarditis and pericardial effusion . My history ;prior long-standing back pain - queried muscular

But got these weird face / eye symptoms with the myopericarditis - sp they queried GCA - put me on high steroids and home to slow wean .

They then decided not GCA but prob Takaysus based on some calcification of aorta .

Now weaned off steroids had PET scan and minimal subtle inflammation of aorta - seeing Rheumy on Monday .

But I now have horrible hip stiffness / difficulty rising from chair etc which I never had before and my normal back pain and feel dreadful .

I don’t know now if the extra stuff is because of vaccine - and tbh I feel it may be - as my body really did a number just after receiving it .

I agree we won’t know for a long time the full reach of this vaccine .

Every doc I’ve seen in this has said the same thing. “ we don’t know much about this vaccine “

And I think they are just trying to work it out too .

I think your doc will firstly want to rule out all the other possible auto immune possibilities . And then work from there

The good thing is if it is the vaccine then it should pass /ease over time - my heart has healed after 4 months from my cardiac mri -last week amazing organ ! Thank god !

Just try to trust it will get better

You should report your possible reaction to the medicines board ASAP - this will keep a record for their sake and yours

[Buttonshutton in reply to Ballywilliam]

Hi. Oh you poor thing that sounds awful. Glad you are on the mend. I have reported it. Sorry you have the hip pain. I get it sometimes. Today it's my thighs. Trying to find it fascinating how it moves around identically both sides rather than upsetting. New theory find it interesting 🤷🏼‍♀️😳. Never gonna take off is it 🤣

[Effectual]

I am newly diagnosed with LVV and signs of PMR after presenting with lung blood clots which happened shortly after second Covid jab. Apart from blood thinners I was not prescribed anything but sent for PET scan which confirmed the LVV and PMR. Hospital Dr wants me on 40mg of steroids which so far I have resisted as I have no pain and feel fine.

[Buttonshutton in reply to Effectual]

Glad you are now out of pain

[Ballywilliam in reply to Effectual]

Do you know if your PET shows active inflammation ? If it does then depending on how active - it needs to be treated as puts the large vessels at risk if not treated . Do you have narrowing in the large vessels ? large vessels Aorta / carotid etc inflammation - def needs treatment .

[Buttonshutton in reply to Ballywilliam]

I don't know. I had a blood test as part of an mot at the doctors recently which showed my likelihood of stroke/heart attack and those were normal so I'm guessing I'm ok on that side of things but suppose the scan will show it all up. I was frightened of what they are looking for on the scan. I over think terribly. Not back to see the consultant till November so guess I'll see what's said then re having the scan

[Ballywilliam in reply to Buttonshutton]

Oh sorry I misunderstood - I thought you had the scam and they diagnosed the LVV. If not diagnosed and they not worried please don’t worry - I’m very like you and overthinking - funny after this recent illlness I’ve gotten better at letting the thoughts go x

[Buttonshutton in reply to Ballywilliam]

Don't apologise. I know I talk in riddles at times. Thank you for understanding. I've stopped with the doctor google. Lesson learned !

[Buttonshutton in reply to Ballywilliam]

It was me. Replying to you when you were askinb someone else. I do apologise !

[Effectual in reply to Ballywilliam]

I do not have answers to your questions. I have only had telephone conversations with hospital Dr. since PET scan. I need more information so requested a face to face consultation but still waiting for appointment.

[Ballywilliam in reply to Effectual]

I guess if they have said you have LVV and prescribed steroids - it might be wise to start them ? Is your GP involved . PMR pro explains it so well below .

[Effectual in reply to Ballywilliam]

Seeing G.P. next week. I have never met the G.P. I’m booked for nor the hospital Dr. I do not frequent my surgery apart from routine blood tests and flu jabs. I need very detailed explanations on what is diagnosed and preferably a look at the scan pictures to show me what is going on.

[PMRpro Ambassador in reply to Effectual]

You may not have any pain - but the inflammation is damaging the arteries and can lead longer term to things like aortic aneurysm and other forms of arterial disease. It increases the risk of atherosclerosis because of the damage done to the lining of the blood vessels which allows deposition of stuff on the walls which narrows them. Don't just think nothing is going on because you have no pain.

[DorsetLady PMRGCAuk volunteer in reply to Effectual]

Ditto to PMRpro’s comments.

[bresbo in reply to Effectual]

All these adverse reactions, plus the prospect of yearly or half-yearly boosters, do any of you folk wonder if the COVID jab is worth the risk? Just asking.

[DorsetLady PMRGCAuk volunteer in reply to bresbo]

COVID kills…..the adverse affects including GCA or PMR or whatever may be unpleasant, but very rarely do they kill.

[Seekingasolution]

The consultant is a ‘she’ btw. -Dr Ruth. But isn’t she suggesting a rapid reduction because the patient hasn’t ‘ experienced the usual excellent response to steroids’ which must be rather miserable. The question then becomes what would help the condition if not prednisolone. If it is related to the vaccine might it wear off? I had a new flare in the shoulders after the adjuvanted flu jab last October .. it’s just settled ... just in time for this year’s jab !

[Seekingasolution in reply to Seekingasolution]

PS your own back story is a fascinating read detailing your fight back to full health. Respect !

[Buttonshutton in reply to Seekingasolution]

I have responded but at higher doses than they'd like. The kettle is no longer a ton weight and I can get up out of a chair without rocking for momentum and get out of the bath. Impossible before. They don't like I didn't respond to 15/20. Or not enough. It took 25

[Buttonshutton in reply to Seekingasolution]

Just worn off. Wow. So here's to next March then !! I've not crossed her name out properly have i. Well spotted yes she is a she

[cycli in reply to Seekingasolution]

sorry, "she" it is. My bad. You are correct in that she is looking beyond the pred. to another cause. There was a point at 25mg or more when there was some relief if I read correctly but the reductions have erased that. I was more concerned with this rush down in dose without due consideration. It clearly is a double edged sword and the patient must be fully involved in the decision as it is their body which has to suffer not the specialists. That really is my main beef with so many posts of a similar nature. I simply find it hard to believe there are still so many insensitive professionals.

[madhouse1 in reply to cycli]

Sadly there are more insensitive than sensitive x

[Fudgeted]

I have always said that my symptoms started after my second covid jab.

[pigeonstreet]

Please report your reactions to the Yellow Card Scheme on the government website so that other people can make informed vaccine choices, thanks

[Buttonshutton in reply to pigeonstreet]

I have months ago

[AshPen9]

That's interesting, my symptoms, which appeared a week after my second jab, had all improved quite a bit (except for the exhaustion) before I started to take pred. Maybe mine is one of the cases of 'polymyalgic type symptoms' that the rheumy is referring to. I think I'll be resisting any suggestion of reducing steroids rapidly!

[Sophiestree]

I don't read this as didactic at all. I appreciate reducing the steroids might cause more pain, but she is saying that the pred didn't give the usual miracle result. I obviously don't know the background, and trust me, I am not a fan of consultants, but at the same time, if they are unsure of the exact diagnosis, surely you need to do some trail and error. The fact she has recommenced a PET CT is good, as that may well help in getting to the right diagnosis. I've read and sat next to far far more didactic, and rude, I really didn't read this as one of those consultants, and it certainly across as someone who wants to get the right result, and not just get rid of you quickly.

[cycli in reply to Sophiestree]

I may be wrong but earlier if I read right it said at 25 mg it was effective. It's the rapid reduction. If wrong ok. but going on this it is presumptive to reduce quickly. It may be something else. She has relief at 25 or over but not under where does everyone suggest that the pred isn't working if that is the outcome?

[Coffeebeans in reply to cycli]

I think it's actually very thorough of the consultant to investigate further if the patient doesn't quite fit the profile. There are many inflammatory problems that pred will reduce the symptoms of but it's important to know what they are because there is usually a better more specific treatment. Or there is a small possibility that it was a short term inflammatory response that will resolve without long term pred.

The only way to know for sure is to rapidly taper and investigate further when and if symptoms return. Pred masks too much.

[cycli in reply to Coffeebeans]

there's a split here. The message is investigate because the drug masks the cause. Ok. That's thorough. The means and delivery of the message is didactic because the patients state is not properly considered.. It's the delivery I'm arguing against not the message. It's the cause of so much unrest, and distress because professionals are not including the patient in the process empathetically.

[Coffeebeans in reply to cycli]

We don't know that. This is a letter between medical professionals, not a transcription of the consult itself.

I would hope the consultation did include the patient.b

[madhouse1 in reply to cycli]

I fully agree. It needs to be a partnership

[Predsharer]

At last a consultant prepared to write down that the vaccine may cause Polymyalgia type symptoms. My Rheumatologist said that my PMR was almost certainly triggered by the vaccine but she refused to report it on the yellow card scheme or put it in writing on the letter to my doctor. Whatever the diagnosis, the fact that it can be triggered by the vaccine has to be of interest, even if it has been lurking somewhere within us for years! I entered my diagnosis on the yellow card scheme (even though it was a right faff to do!) and note that almost every week there are about 40 people who report PMR as being triggered by the vaccination. Given that most people don’t report their side effects on the yellow card scheme, this is a lot!

[cycli in reply to Predsharer]

something else going on certainly and should be considered. It's a complicated disease which gets triggered by numerous things once we have prepared our bodies appropriately by overusing them it seems. What a tangle. I'm glad people want to investigate and try and sort it out, but I just wish they would have more consideration for the people who are providing them with the fuel lighting the fire of their enthusiasm.

[Bessie333]

I find this very interesting as I was diagnosed with PMR after my second jab and I am now beginning to wonder if there is a connection. I do not have such

[Coffeebeans]

I actually think this is a good way to proceed. The same thing happened to me way before covid jabs.

The basis of the reasoning is that there is the possibility of a reactive 'arthritis' from a jab that will resolve itself reasonably quickly and it would make sense to know if this is the case to avoid long term steroids. If the pain returns, it would appear the PET-CT would be ordered to check out what is occuring.

I see this as being very thorough and looking at all options, especially as you don't seem to fit the profile exactly. Make sure you use the helpline provided if the taper gets too much.

[WeAreAllMutants]

PMR appeared as sciatica symptoms one month after my second Pfizer jab on 12 March, 2021. This worsened for two months before bursitis symptoms appeared. At 3.5 months post-jab I could not roll over in bed or move a bed-pillow around - excruciating pain in most movement. Immediate, near total relief with 20mg prednisone. Reaction reported to Vaccine Adverse Event Reporting System (VAERS) in the US, and the CDC actually called with follow up questions.

I got the booster (Pfizer), along with the flu jab, four days ago, 4 October, 2021. For two days afterwards I felt beaten down but now I am the same as pre-booster. Fingers crossed.

Three months plus a week on prednisone and I am down to 13mg daily. It’s been nearly seven months since second jab. Tapering slowly, looking out for symptoms.

I am clear that the vaccine triggered my PMR, but think I was predisposed because my poor mother suffered back & shoulder pain for decades, undergoing multiple operations and forever taking pain killers. No PMR diagnosis for her, just surgeries and lots of pain pills from the 1960s until her death in 2009. How my heart goes out to her now.

[madhouse1 in reply to WeAreAllMutants]

Very similar with my dad. He was rushed to his our all with GCA and out in high dose of pred and all his (what I now know as PMR symptoms) disappeared. As they lowered the pred quite quickly all his PMR symptoms returned. No PMR mentioned back then at all.

[Smallstepsforward]

My rheumy has said much the same in my reports. He also said that he seeing a big uptick in patients coming to him with inflammatory conditions post covid and/or vaccines.

[Buttonshutton in reply to Smallstepsforward]

That's interesting. I'm booking my booster unsure whether to but can't get any worse hopefully !

[Smallstepsforward in reply to Buttonshutton]

Mt rheumy said that the effects of covid in relation to inflammatory conditions is at the start of a very long story....

[Buttonshutton in reply to Smallstepsforward]

I've no doubt all sorts will come out in a few years !

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

No doubt it will, and Covid will still be about as well…WHO concerned about new variant in Southern Africa as we talk about it- which may be even more transmittable.

The only way is vaccines and masks!

[Buttonshutton in reply to DorsetLady]

I know. It's here to stay isn't it. I'll get the booster I was just concerned. But it can't be worse than now regards PMR long term don't suppose so I'll bite the bullet

[Smallstepsforward]

I have been told to hold off until my next appt with the rhuemy. I will have to get one as I want to go to Australia next year, but as I am relatively symptom free right now, I am not keen!

[Buttonshutton in reply to Smallstepsforward]

Yeah I know what you mean. I've booked it once then cancelled it but my mum is really upset at me saying may not get it. My rheumy said do it but I don't have any faith in her !