Been there, done that : I got my astra whatever it... - PMRGCAuk

PMRGCAuk

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Been there, done that

Singr profile image
63 Replies

I got my astra whatever it is vaccine yesterday. Was no bother, no pain just a wee cold spell on injection. I felt fine, in fact I felt high. Ha! ....and then the pain started in. I'm lucky if I got an hour of sleep. Feels like flu. Feels like the start of PMR & GCA all over again pre steroids. I was having temperal lobe and whatchamacallit headaches. Oh the other thing, my vocabulary is missing and my speech all mixed up. Thought I'd got away with it but no. What were you're experiences?

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Singr
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63 Replies
SheffieldJane profile image
SheffieldJane

I had no reaction, not even a sore arm. My husband was ill with flu-like symptoms for 5 days. He has no underlying health problems.I would be inclined to check with my doctor about increasing Pred by 5 mgs for a week to 10 days and then return straight to my original dose. It is beginning to sound like a flare.

maria40 profile image
maria40

I had very nasty flu like symptoms. I was icy cold and wanted to crawl away from everything. This started about 12 hrs after 9 am vaccination and I still felt rotten the next day. For the next few days I felt desperately tired. Viewing 2nd shot with trepidation.

piglette profile image
piglette in reply tomaria40

Was your vaccine Astra Zeneca? If so the first dose is supposed to be worse than the second dose.

maria40 profile image
maria40 in reply topiglette

Yes it was. That's something to hope for then.

Singr profile image
Singr in reply topiglette

Hoping so,

herdysheep profile image
herdysheep in reply topiglette

Sincerely hope that is the case as the 1st one didn't trouble me at all!

Singr profile image
Singr in reply tomaria40

I seem to be unseizing and headaches are gone.

diana1998 profile image
diana1998 in reply tomaria40

My friend had a bad reaction to the 1st jab, but none at all on the 2nd so try not to worry.

1602 profile image
1602 in reply tomaria40

Same as you for first jab, second jab completely different. A little tiredness next day then fine xx

HeronNS profile image
HeronNS

Personally I wouldn't increase the immune suppressant to deal with this. You want a good immune response. Try the ordinary otc painkillers first. And try to sleep it off. I used to try to sleep when I had bad migraine in the bad old days. Hope you feel better soon.

Have to say I'm becoming more and more relieved I'm not in an age group that will get A-Z in my jurisdiction, at least not yet.

piglette profile image
piglette in reply toHeronNS

Don’t believe all you hear about Astra Zeneca. I smell fake news.

HeronNS profile image
HeronNS in reply topiglette

What I have heard is the very rare atypical and sometimes fatal blood clots, mostly in younger and middle aged women. This effect has not so far been noted with the other vaccines in use in our North Atlantic region. I don't believe this is fake news.

ctvnews.ca/health/coronavir...

researchsquare.com/article/...

KellyInTexas profile image
KellyInTexas in reply toHeronNS

Hi Heron,

Thank you for your last really nice response to me. I read it with the warmest of thoughts for you and am so sorry I have not replied.

Dr. Beverly Hunt, who is a top hematologist in London, is following the AZ clotting issue very closely.

She stated on Twitter that the age group you have referenced was a bad study in that this age group also includes women in child bearing years on birth control and pregnant women, so more likely to form clots.

She announced a few days ago ( via Twitter)that she is focusing her efforts into AZ to investigate whether or not there is a higher incidence of thrombosis in unusual sites, and a higher incidence of thrombocytopenia.

Beverly Hunt

@bhwords

HeronNS profile image
HeronNS in reply toKellyInTexas

I thnk that was the initial reaction of the experts but there is something odd about this cluster (I guess it is a cluster) which warrants further study. All stuff that would usually go on behind the scenes while vaccines are tested in final stage trials. I do believe it is a very good thing it's been taken seriously because that increases my faith in the process and confirms the safety of vaccines.

Singr profile image
Singr in reply toHeronNS

Yes this did bother me as no one was checking on my medical history. I was worried that as GCA is inflammation of the blood vessels that might mean we are more prone to clotting. So the headaches worried me. The lack of discussion over what we have, what we are taking and how it may have contra-indications is really worrying.

Singr profile image
Singr in reply toHeronNS

I am worried about the lack of cognisance taken of our conditions, medication and other things.

HeronNS profile image
HeronNS in reply toSingr

I think data is being collected all the time, from everyone who is being vaccinated, at least in countries where it can be done. By this time next year, long after we've all received two shots and probably in line for a booster, we'll look back on these days as the dark ages of the vaccination campaign.

My personal worry is that that sudden delay of from three of four weeks between shots to sixteen weeks may work fine for healthy people with good immune systems but be a bit of a disaster for those with faulty immune systems. On the other hand my information submitted when I booked my vaccination includes the fact that I have PMR and am on a certain dose of prednisone. I suppose at some point all this information gathered from millions of people will get crunched and some sort of picture will emerge. Right now each one of us is an anonymous pixel and the image is barely starting to form.

Presumably among the millions of people already vaccinated, apparently none of whom have developed serious covid or died from covid, many have a compromised immune system, this being common amongst the aged, who have been the first to receive mass vaccinations. That should encourage us all.

piglette profile image
piglette in reply toHeronNS

It is, believe me. Those sort of blood clots can occur without having any sort of vaccine let alone an Astra Zeneca one.

HeronNS profile image
HeronNS in reply topiglette

Fair enough, but we aren't hearing same about the other vaccines, that question has been asked and the same effect has not occurred, at least to date. Also, we aren't seeing same issue everywhere A-Z is being administered. If it was simple background occurrence we'd be seeing it. I think it a mistake to deny there may be a problem. Much better to look into it and make sure, and also to exercise caution until we know for sure. If there is a problem it may be something which can be solved relatively easily. Or they may even determine certain contraindications so people who could be at risk can be properly advised, and offered a different vaccine. It seems possible, from what I've heard, that there was something wrong with a particular batch. If that's the problem, find out what it was so it doesn't happen again. Everyone wants A-Z to be successful as it will be a very useful vaccine in parts of the world that don't have the facilities to handle Pfizer or Moderna. I'm not getting my info from social media, I'm hearing it from our Public Health officials.

piglette profile image
piglette in reply toHeronNS

Why isn’t more fuss made about the severe allergic reactions, including anaphylaxis, that have been reported following the Pfizer-BioNTech COVID-19 Vaccine?

HeronNS profile image
HeronNS in reply topiglette

Maybe because we all know that anaphylaxis is possible with any vaccine? We all have to stay in a separate area for 15 minutes after the vaccine in case anyone does have a reaction.

Singr profile image
Singr in reply toHeronNS

Not us. Just sent right out of the building.

HeronNS profile image
HeronNS in reply toSingr

Wish it was like when, in the days I was able to donate blood, after you'd finished you got to eat a cookie and have a drink. I've planned my appointment for a time when I can go next door to the bookstore afterwards so I hope I don't have any sort of reaction, After my first flu shot lo these many years ago as it was being administered I was told that some people felt strange after the shot and if I did I should tell them and in fact I did, right away, and had to sit for about twenty minutes before I felt fit to go home. It turned out I developed a massive bruise on my arm which took ages to fade so she must have hit some sort of blood vessel.

Blossom20 profile image
Blossom20 in reply toHeronNS

It is worrying, and it is difficult to find reliable information about it. I have been trying to! It is not just young females on the pill, there are several young men who have died as well. Of course the numbers reported depend on the ease and accuracy of the reporting mechanism. The latest that I have heard is that it may be that the vaccine triggers an immune response in some people to attack the platelets - similar to what happens if they are given Heparin (HIT) (Heparin induced thrombocytopaenia). If this is the case then they may be able to test for this before the vaccine is given maybe.

It is good that it is being investigated. I am sad for AstraZenica because I like the fact that they are offering the vaccine at cost and not trying to profit out of it.

But what to do about the second dose? I'm inclined to wait a bit. But I suppose that if it didn't happen after the first dose then I don't have that tendency... It is all a bit of a gamble though, especially as we are already attacking bits of ourselves.

HeronNS profile image
HeronNS in reply toBlossom20

An initial study seems to indicate there is little if any association with the birth control pill. It's a different kind of blood clot than usually associated with that. This is what is causing concern in Canada. and it's really not a big issue here because there are heaps of people between 50-64 who are metaphorically lining up to get it, and the younger cohort can get Pfizer, and Moderna whenever the next shipment arrives. In Nova Scotia they have never given AZ to people over 65 as when it first arrived here there was some question about whether older people should get it. Can't remember what the reason was, but that has changed, although in Nova Scotia my age cohort (everyone 65+) will continue to get Pfizer, etc. It's an evolving situation that's for sure. And like I've already said, everyone wants AZ to be successful. I personally am very pleased that all these issues are being taken seriously. The point about anaphylaxisis with Pfizer and Moderna has been raised and that was a very early issue, determined that in many cases people had already shown allergy to an ingredient, or had multiple allergies generally, so now the questions we have to answer when booking our appointment include saying whether you've previously shown an allergy to any of several ingredients found in vaccines. Hopefully they'll find a similar risk factor to explain these unusual clotting events to lower the risk. We are so lucky to have alternative vaccines available already!

PMRpro profile image
PMRproAmbassador in reply toHeronNS

It probably isn't fake news - but the incidence of the cerebral ventricular clots is not yet higher than in the general population. The peak is in a sub-population of young women with other risk factors.

But I suspect it is being politicised - AZ made some elementary errors in their original study documentation and that has led to a degree of scepticism. And they won themselves no friends by insisting the supply problems in the EU were due to manufacturing problems (fair enough) but at the same time going about fulfilling contracts to the UK and Australia rather than the contract drawn up with the EU.

The AZ vaccine can't entirely be compared with the Pfizer/BioNTech and Moderna vaccines - they have very different mechanisms so hearing nothing about clots with them is hardly surprising. In most countries they have also been used for much older patients - removing any potential confusion due to the high rate of clots found in young women taking the contraceptive pill.

HeronNS profile image
HeronNS in reply toPMRpro

Therefore my opinion (and that of our own public health) stands - that we need to exercise caution while we learn more. That's true of all the vaccines of course and I'm sure if potential problems are noted with the others we'll learn about them rather promptly these days! There really isn't any room for mistakes.

piglette profile image
piglette in reply toPMRpro

There are also various “companies” who are none too keen on Astra Zeneca starting to be involved in vaccines for the first time and to add to that selling at cost. Doesn’t it sound strange the things that have turned up, eg in France - it does not work on over 65 year olds (French manufacturer of Covid vaccine Sanofi). Germany - should not be used in under 60s due to blood clots (German manufacturer of Covid vaccine BioNTech). I am being sceptical again having seen Big Pharma at work. I should add this is my personal opinion.

PMRpro profile image
PMRproAmbassador in reply topiglette

Oh yes - it all stinks. Mind you, BioNTech doesn't seem to be benfitting Germany much ;) I saw a bit behind the scenes at Roche - wouldn't trust them to see me across the road!!!

piglette profile image
piglette in reply toPMRpro

Do you remember Roche and diazepam, dropped their prices drastically, everyone else left that market place then they started charging astronomic amounts? Of course Germany may want us to look at Astra Zeneca rather the severe allergic reactions that have been found with the BioNTech vaccine!!

HeronNS profile image
HeronNS in reply toPMRpro

and piglette

ctvnews.ca/health/coronavir...

piglette profile image
piglette in reply toHeronNS

Someone is doing a good job at trashing Astra Zeneca!

HeronNS profile image
HeronNS in reply topiglette

I can't understand why you seem so opposed to clinicians doing due diligence.

piglette profile image
piglette in reply toHeronNS

I am very happy that everyone seeks as much information as possible but I would like to see a level playing field not the seeming bias that we are getting at the moment.

Singr profile image
Singr in reply toHeronNS

Thanks, I slept on and off during the day just easing off now.

Carriemetz profile image
Carriemetz

I had no reaction at all - no sore arm, nothing. My husband likewise.

I had the Pfizer jab late January, felt ok for about 10 days then had a PMR flare. Got it under control with increasing 5mg for nearly a week. But I haven't felt like my old self since. Various pains develop arroud my body which don't last more than a few seconds, but feel in general that I have aged 10 years. Weard or what.

Poshdog profile image
Poshdog

I had a flare a week after second AZ dose and arm began to ache around jab site but as this coincided with beloved terrier being put down I am not sure of cause. Started pred 4 years ago, was on 4 mgs, down from 15 but have upped it to 8 mgsWill see what happens

Viv54 profile image
Viv54

A friend of a friend ! who a Dr said to start taking Panadol etc , for at least 2 hours before the jab then carry on every 4 hours till bedtime , my family all did this and whether is was luck or not, it helped ! i shall be doing this when my second jab comes around ! No side affects at all .

Becki-boo profile image
Becki-boo

Hello Singr, you have just described my experience after having the AstraZeneca injection with the pains and temporal headaches. I was told to report my side affects to 119, which I did but 10 days later I was still the same where my doctors did tests and said it was PMR. I have since seen my arthritic specialist who has confirmed at the age of 40 I do have PMR. What he doesn’t know is if the injection caused it or if it was just a coincidence that it happened after having it? It may be worth speaking to your gp (after 119) to see if you can go back on your high dose steroids to help you out while you feel so poorly if the pains continue. Good luck xxxxx

PMRpro profile image
PMRproAmbassador in reply toBecki-boo

Or, as yet, if it is a form of reactive PMR, a bit like the reactive arthritis that they do know about. I think that the cases that resolve in under a year are a specific form of PMR and some of them at least are a reaction to something specific. I'm not saying that only the short duration cases are the reactive form though.

Who is your doctor? Someone who accepts PMR can happen in young patients would be a really useful find ...

Becki-boo profile image
Becki-boo in reply toPMRpro

Hello, my doctor is brilliant she’s been looking after me for years. She diagnosed me with osteoarthritis at the age of 24 after years of pain and nobody listening to me. Her name is doctor jogia (think it’s spelt that way) she did explain that younger people can get it but it’s a rarity. After all the blood tests and how high my levels were she said it was no doubt in her mind that it was PMR. Xxxxx

PMRpro profile image
PMRproAmbassador in reply toBecki-boo

Which hospital? She sounds great!

Becki-boo profile image
Becki-boo in reply toPMRpro

I think she’s from Leicester hospital I see her as a specialist at my local medical centre xxxxx

PMRpro profile image
PMRproAmbassador in reply toBecki-boo

That's good - seems to be improving, they were very poor in that area a few years ago.

Singr profile image
Singr in reply toBecki-boo

Headaches have lifted now but I wasn't sure what to do as it was the middle of the night. Now I just feel like I have flu with sore throat.

Becki-boo profile image
Becki-boo in reply toSingr

That’s good that your starting to feel better. I was told the symptoms would ease after 72 hours, I was also told that if you have side effects with the first dose when it comes to the second you shouldn’t have any. I will find out in 3 weeks if that is true xxxxx

York54 profile image
York54

I had AZ and was fine apart from feeling completely wiped out the next day. Hubby had then chills in the early hours of the next day, took paracetamol then was fine.

Seekingasolution profile image
Seekingasolution

I had a flare of PMR in my shoulders and arms ( previously in hips/ legs) after the adjuvanted flu vaccine this year. I can’t seem to reduce it with pred. And don’t want to increase the dose any higher. Was nervous about the AZ C19 vax but apart from a few hot and cold chills on night one, nothing further. Have now reported flare re adjuvant on yellow card system on line. I’ve also read that previous adjuvants have been known to cause trouble too - suspected with Gulf War Syndrome. Having read about clotting I’ve also started a small aspirin per day for the time being as a blood thinner.

so sorry for you very unfortunate. do hope you recovery soon, just have to give yourself up to it rest plenty fluids no stress... nd wish you a speedy recovery... please forgive my mentioning but registering on yellow card scheme (last thing you feel like doing at the time, but totally precious and vitally important), truly deeply helps everyone on the planet, if you ever feel up to it, in the mean time many blessings and please God don't be left with an additonal autoimmune thingy, one at a time please!!! thankyou for sharing, polly

Oumaof2 profile image
Oumaof2

I had 2nd Pfizer yesterday... Sore arm same as 1st... After the 1st in January, I felt really energised, which lasted until three weeks ago when adrenals didn't want to share that energy... Currently on 3.5mg...Have felt very lethargic since, until yesterday!... Same result, came home, cleaned the oven, hoovered and washed floors... Still feeling energised today... I don't know what to make of it, but will accept extra energy where ever it comes from... Has anyone felt this or heard of anyone who has experienced this?...

A Happy Easter to everyone 🐣🐤

Becki-boo profile image
Becki-boo

I have it in my back and in my shoulders mainly and have had to have many minor operations to shave away bone that is growing on the joints. The specialist told me it was hereditary as both my mum and nan had it. We are in control with the osteoarthritis pain as I take oxycodone, pregabalin, nortryptoloine and oramorph when I’m really bad. Now with the PMR I also take the steroids xxxxx

Singr profile image
Singr

I'm really not a fan of increasing my pred by 5mg. It took me so long to get down under 10mg.

every 0.5mg drop was torture. Severe depression, lethargy, steroid withdrawal psychosis. among many other things. I'm told I'm really sensitive to the withdrawal process. I tend to only reduce every 3 months or so but in some cases longer. Can you imagine how long it would take to get me down to 7mg again? I think I'll ride out the discomfort for the moment. The good thing is the headaches have gone. That was the worrying thing. Had that lasted I would have called to A&E. My family have me thinking I'm a hypochondriac. Yeah, like you would really want to feel this crap deliberately eh?

HeronNS profile image
HeronNS

Yes, I still think it's interesting they haven't approved the vaccine for their own use yet, but I suppose we should give them the benefit of the doubt - share with the neighbours before the doses all expire? To be honest I'm not sure why Canada was included in this deal, although all three countries are part of what used to be called NAFTA. Seems to me the Mexican need is far greater, as is the need on the part of the US to secure their southern border not so much against migrants as against constant importation of covid. I don't know why I got so deeply invested in this conversation. What I really want to see is the two leading Canadian candidates get through the preliminary trials and prove worthy.

1602 profile image
1602

Hi there, I was same as you, poorly for several days. It passes. Second jab completely different a little tiredness for day or so then fine. Hang in there, it passes, be kind to yourself xx

piglette profile image
piglette

The AstraZeneca vaccine may not have a large role in vaccinating people in the United States because the three companies already approved (Pfizer, Johnson & Johnson and Moderna - all American) to supply vaccines in the country agreed to provide enough doses for anyone who wants one this year.

HeronNS profile image
HeronNS

It's an odd gift, described as a loan (how can you lend vaccines?), as we are expected to send vaccines to the US later..... Nevertheless it helps deal with the shortage in Canada as we stupidly gave away our own vaccine production capability years ago. Can't say I was sorry to hear that my 43 year old daughter received Pfizer, however. Like me she has to wait 16 weeks for second dose.

I knew the much lauded Connaught Laboratories had been privatized and then sold. What I didn't know until a couple of days ago was it had been sold to Sanofi, which closed the facility. And has now been given big funding to build a new vaccine plant in Canada. Different government, but still.... 🙄

piglette profile image
piglette

I believe the vaccines are sitting at an Astra Zeneca facility in Ohio and also at one of their contractors plants I believe in Maryland.

HeronNS profile image
HeronNS

Clarifies: smithsonianmag.com/smart-ne...

piglette profile image
piglette in reply toHeronNS

There are two sides to this story. I will not go into the complexities.

piglette profile image
piglette

Oxford University said they wanted it distributed at cost. The University already had a base as they had been developing the MERS vaccine which had not been needed in the end but MERS is also a coronavirus they had a base for the Covid vaccine. As I said Astra Zeneca were not in the vaccine business so it was there opportunity of getting into it. Astra Zeneca set up vaccine manufacturers around the world over a year ago. I am not sure how many they actually used as I believe one was in China and also India. They did this over a year ago and would naturally have included the US.

HeronNS profile image
HeronNS in reply topiglette

I think our first batch of AZ, about a month ago, was from India. It had to be used up really fast because it had an expiry date of late March.

HeronNS profile image
HeronNS in reply topiglette

You and Hidden (and others) might be interested in this article:

cbc.ca/news/health/astrazen...?

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