Since my second dose of the covid vac, which was back in Feb, I feel I should be taking more pred, than I do, maybe just a half of of mg. would do it, but, damm, I don't want to. I am down to 3 mg. Right after the second dose, I did go up a half, because I was feeling very unwell and exhausted, but went back down to 3 soon after. Now, I go about my days hoping tomorrow will be better. The exhaustion, has gotten better, but there are still the "small niggles", that I recall from the beginning or from a flare. It is not debilitating, but it is there. I keep thinking that if enough time goes by, (removed from the vac), it will get better, without me increasing the pred. Wishful thinking?
Anyone feeling the covid vac has made their PMR a... - PMRGCAuk
Anyone feeling the covid vac has made their PMR a bit worse?
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misspops
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I haven't felt as good since the second shot - and I did go back to 15 from 13mg because the fatigue was crippling. Now trying 14mg again. It isn't a real flare, bit achy and, as I say, the fatigue.
in reply to PMRpro
Same here, but sticking to 3mg at moment. Just seeing how it goes. (Pfizer vaccine second shot 17th April)
Which vaccine did you get? Here we are now expecting a four month delay between doses of all two-dose vaccines, but that may be shortened if the vaccine supply allows. I'm not looking forward to second dose. Had Pfizer and am sure I had a reaction, although I felt at the time it only lasted about four days. Unfortunately I now seem to be stuck at my current rather high for me dose and not getting any better. I hear the second Pfizer reaction tends to be significantly worse than the first so not really looking forward to July!
I don't know if any effort is being made to collect data on this as there are now a lot of people in the country (Canada) getting their second doses. I do know when I booked my appointment they did collect some health information including that I have an autoimmune disease, so the possibility exists to collect more data. Whether they do or not remains to be seen.
The hard thing is not knowing whether it's the vaccine or simply continuation of a flare I was already experiencing, or whether the vaccine has delayed the decline of the flare.
Hi Heron, bug Sister had Pfizer and heard yesterday that no. 2 is now booked, that will be 14 weeks gap.
If I could have seen the future, I would not have gotten my second dose of the Moderna vac, especially knowing now that we, immune suppressed, probably aren't protected.
We are probably still better off having had it than not - and there is evidence on this forum alone that we do produce antibodies, several people have had them checked. If you don't have the jab and meet Covid your immune system has no previous experience to go on. And at least with the vaccine you can't get Covid from the vaccine
So you think we are protected then? I'm recalling the article in the Atlantic recently.
Well the other thing is, just how immune suppressed are we, really, compared with people on much higher doses of immune suppressants for other conditions? I don't think we can compare ourselves to transplant patients, or cancer patients, unless we also happen to have those conditions. If one has to have an autoimmune disease, PMR is the one to get!
We may be - it's a don't know. What is certain is that if you don't have the jab - you have NO protection. I have had it, assume I haven't got a lot of protection and continue much as I have for the last year. It will emerge eventaully how well protected we are - or not. But I have every intention of giving myself the chance.
I guess you means this - theatlantic.com/science/arc...
This is from UK site -
This statement has been developed by the British Society for Immunology COVID-19 and Immunology Taskforce which is made up of experts on how the immune system works. This statement is aimed at people who either have a medical condition which means their immune system doesn’t function optimally or people who take medication that suppresses their immune system.
All three of the COVID-19 vaccines (Pfizer/BioNTech; AstraZeneca/Oxford; Moderna) that have currently been approved for use in the UK are safe to use for people who are immunocompromised or immunosuppressed. None of these approved COVID-19 vaccines contain any active SARS-CoV-2 virus. The Pfizer/BioNTech and Moderna COVID-19 vaccines are both mRNA vaccines which contain a small piece of genetic code from the SARS-CoV-2 virus to generate an immune response. The AstraZeneca/Oxford COVID-19 vaccine is a viral vector vaccine, which uses an inactive unrelated virus (the viral vector) which cannot replicate to deliver SARS-CoV-2 genetic material to generate an immune response.
While COVID-19 vaccination might provide a lower level of protection in people who are immunosuppressed or immunocompromised compared with the rest of the population, it is still very important that you get vaccinated as it will offer you a certain amount of protection against catching COVID-19. It is important that you receive two doses of the vaccine to maximise the protection that vaccination offers you.
COVID-19 vaccination will work best if you have a functioning immune system. For people currently undergoing whole organ or stem cell transplant and who may be severely immunocompromised, you should talk to your medical treatment team about the most suitable time to get your COVID-19 vaccination.
It’s important to remember that the COVID-19 vaccines can protect you from getting seriously ill with COVID-19, although if your immune system isn’t functioning optimally this protection will not be complete. We don’t currently have any evidence that the vaccines can stop you passing on the virus to others even if you make a good immune response. This means that even after you have been vaccinated, it’s very important that you still follow social distancing guidelines and wash your hands regularly.
If you have any questions or concerns, you should talk to your medical team or GP in the first instance.
Doesn’t say you aren’t protected, just your protection may not as good as someone without a compromised system... not quite the same message.
I thought with the vaccine we reduce the severity of Covid if we get it. But wondering about your last statement:“ And at least with the vaccine you can't get Covid”
You can't catch Covid from the vaccine ...
Misspops this is simply not true. There are people on this forum including myself, who have had both jabs and have then had the immunity test which you can buy. We have all been surprised and delighted to find that we show plenty of immunity.
However my friend who has been on cancer drugs for years had the same test as me and showed no immunity.
Re the second Pfizer dose, for me the expected worse reaction didn't happen: slightest of headaches and, when I went to bed, I slept much more heavily than usual but in a most satisfying way. Wish I could sleep like that every night!
My PMR activity is very low at present, and didn't flare. But the fatigue has I think been worse since the vaccine, not lifting after a day or two which happened with the flu shot. Fatigue's my main problem atm anyway, so maybe the 2nd vaccine does exacerbate whatever's going on for each of us.
Interestingly, our son aged 52 who has been a Type 1 diabetic since childhood says that since his AZ vaccination his diabetic control has been extremely bad. He says it is a dramatic change and there is nothing he can do at the moment five weeks after his second jab. He has increased his insulin dramatically and cannot eat any carbs whatsoever and hopes that time will improve things
I am currently on 4mg pred and have had both vaccines, Pfizer. My reaction was no worse than the rest of my work colleagues and we all got them round about the same time. Maybe a bit more fatigued day three and four after the first but I still went to work
hello,HeronNS, the Yellow Card report Scheme here in UK asks us to let them know any chnages we experince after our vaccinations. sadly people dont realise you can have a reaction 1 day, 1 week , or even 1 month after vaccinations. so because they usually feeling rubbish, they fail to connect the dots back to the vax.
Then the powers that be bless them understandably dont want negative feedback to deter people from having the vax, so posting reactions on here that might be a reaction, has to be worded very very carefully, as it is vital not to put folk off ; but equally vital to make people aware of the possible side affects, to be armed with knowledge and readyness if they occur.
I've had both pfizer vax and had really terrible reactions both times, so dreading booster in autumn; but have to do it if I want any semblance of my life back, even with the life changing reactions.
More good reasons to vax are in The BMJ report on 22 09 2020 discusses findings on Silent Covid and how it drives the virus undetected, making vax to protect us even more important.
Long Covid breaks my heart for all those poor souls trapped and locked in a maze of searching for a post covid diagnosis of their horrific symptoms, many left with life changing auto immune dissease which have been triggered, as with other lesser vax like the flu jab triggering shingles etc,
We protect ourselves and each other by having the vaccination. The true fallout of those sacrificed on the anvil of max herd coverage, will never be told. Especially as so many do not even realise the condition or symptom they are left with, was triggered by the covid vax.
The majority of people realise thank goodness, the combination of vaccination and testing and guidlines and travel restrictions are the key to unlock this viral grip on our planet.
Speaking from the anvil, I hope to play with my grandchildren safely in the sunshine one day. Bring on the Boosters, best wishes grandmother polly
I had Pfizer first dose, end January. Next day had a huge upsurge of PMR type symptoms, which I still have. Originally had GCA (since Dec 2016), and had got off pred late 2020 - symptom free for about 6 months.
Felt v unsure, but decided to go ahead w 2nd dose, which I had end April.
And this time, only minimal side effects - slightly sore arm for a couple of days. So, glad I had it.
Still battling the PMR + related problems. Trying to avoid pred because of side effects. But relieved to be protected against Covid.
Onwards with hope.
Yey, def big not bug!!! She'll be in the 78 years range - really old compared to me!! She and OH had no reactions, but they are not on same medication/s as us.
Felt dreadful 4days after my second Pfizer jab ,totally exhausted. I now have a urinary infection. Don’t know if there’s any connection or not . Don’t think I will be having the booster one that they are talking about.
Just think how you might feel if you actually had got Covid?
You must have the second shot unless there's a real medical reason why not to. It's the second dose which really gets the immune system in fighting trim to deal with any covid infection. This is the reason I'm concerned that I have to wait so long for my second one, because I don't know if the priming from the first one will have faded too much by then.
I don’t wish to sound discouraging but I had really bad fatigue with the 2nd Pfizer jab. I was taking 7 mgm of Pred and upped it to 8 mgm after a week of having the 2nd jab. I have dropped again to 7.5 and at last I feel ok after a month after the 2nd jab, but cautiously have stayed at 7.5 mgm and will for a few weeks. Having said I feel okay, have had back pain for 10 days. Always something isn’t there? 😬
I have been even more exhausted and achy. It was 2 weeks ago. I wonder if the extra 5 mgs for around a week and then straight back to 3 mgs would work for you? It might just zap the inflammation. I haven’t done this because I am on Actemra injections and I want them to work for me.
So I took 5 mg at 2am this morning. Hoping this is enough, I will know when I walk out to the barn to look for an egg. I would like to be upbeat when my kids call me today.
Do you think it will be ok to go right back to 3 after a week of 5? No hanging around 4?
Thanks to everyone for their input and advice.
Hi Misspops,
I know you feel really good that you have got as low as 3 mgs pred per day - well done!! I'm jealous!! But, at such a low dose I rally wouldn't worry about having to up to say, 5mgs to get you through the reaction to the vaccine. Many doctors are of the opinion that below 5 mgs there's not too much to worry about. The last thing you want is for the inflammation to build up again when, increasing by an mg or two can bring it under control.
I had the 2nd AZ injection in April, I was on 4.5 mg pred. After the jab I got all the old symptoms, I waited for about 10 days, in the hope that it would fix itself. It didn’t get any better and so I increased the dose to 10 mg and after a week I will reduce down to 5 mg tomorrow. By coincidence I have a COVID test tomorrow prior to some surgery on Friday.
Had both jabs (moderna) no side effects, not even a sore arm at the injection site which I always get with my flu jab!
Hi misspops, I can totally relate to you as I am on 4mg and have been feeling very fatigued since my second Phizer jab in april, everything is such an effort at the mo and by evening I have achy arms and shoulders, not as bad as when first diagnosed but annoying. I have been wondering if it had anything to do with my jab. Been thinking of increasing my dose to help but I am reluctant as my doc and rhumy just want me off pred!!!! Diagnosed March 2016. Hope you feel better soon. x Jenny
Obviously your GP and rheumy don't "get" that they don't make the decision - the PMR does. As long as it is active, you will need some pred. Would they tell their RA patients they need to get off their DMARD? I think not ...
I've had both my jabs, I had AZ, after the first one I felt really cold and had the shivers all night, I could not get warm at all. Had no immediate reaction after the second one which I had three weeks ago, but the last week or so I've been feeling a bit dodgy, muscle pain, shivers, ibs playing up, feeling a bit headachy and very tired, I'm wondering if it is the jab making me feel like this, I've been on 6mg of pred for a few weeks now, I'm so reluctant to go up because it's taken me a long time to get this low
I had real fatigue after my first Pfizer jab so after my secomd one I upped my pred slightly and this has helped. I am on 4.25mg and upped to 5mg for one day and 4.5mg for 2 days. Now back on 4.25mg. I did ache a bit but I have some protection
I have had both Astra Zeneca jabs. At first I thought I had absolutely no adverse reaction at all, not even a sore arm. However, I had tapered down to 4mg pred for pmr, and have had to go up to 8mg because of flares. So many in this thread have complained of tiredness after the jabs, and that is my main complaint. Total exhaustion. My flares consist also of painful wrists and hip, but it's the deadly fatigue that clobbers me! I'm beginning to think this is a result of the vaccine as so many others are experiencing it. Vaccination is still very much worth it though!
I had both Pfizer shots. No immediate reaction, but 2+ weeks after last injection, (Feb 12), a full blown flare started. It took another 2 weeks to mature, ...at which time, I finally admitted it was a flare😡
I raised my pred from 6.6 to 20 mg for 3 days, then began reducing back to current dose of 7.5. The take-away message from me is that my reaction was delayed more than 2 weeks after the second injection.
I am mostly back to "normal" now, and starting my next taper regimen.
Kind Regards, Jerri
P.s., no matter the reaction, I WILL be in line for any boosters! Covid would be much worse.
Really interesting to read everyones comments - I had the Pfizer in december and second one 12 weeks later - no problem with the first, but soon after the second I started to feel rough, exhausted , aching - I put it down to a reaction at the end of months of stress, and thought I was having a flare as a consequence of that, but reading the comments seems like it probably is a result of the 2nd jab. Upped my pred from 3.5mg which I've got down to steadily for quite a while [I've had PMR for around 8 years] Very reluctant to do so and only went up to 5mg but already trying to drop back. Cold windy weather didn't help, a confusing catch 22
but found everyones experiences helpful as always and the up side of the jab is having resistance to Covid with an auto immune condition.
How long did you stay on 5 mg? More than a week? Did it get you back to 'pre vac' feeling? And are you tapering back down, or just free fall to 3.5? Just wondering what I should do, very similar to your story. Today was my first day back to 5 mg, and it was slightly better, but not enough........
I didn't equate all the symptoms to the Pfizer 2 jab until i read the posts last night. As I said, I had been going through a really emotionally taxing house clearance for an elderly relative over weeks, so put it down to the mental/physical stress. I only stayed on 5mg for 3/4 days then dropped to 4.5 for a few more days and now on 4mg where I think I will stay for a week depending on how things start to resolve, then back to 3.5. I have rested a lot, couldn't do much else, and I think this has helped but I was really affected by the v cold weather and gale force wind over the past month - its all a bit of a conundrum - its now warmer, the extreme rest has helped, but never quite sure at the moment what each day is going to throw up. I've had previous flares over the past 8/9 years learnt lessons about not trying to cut the dose too fast and have once or twice had to almost start from scratch and take months to reduce, but have until these past weeks fluctuated between 3.5 and 3 for several years and tried to avoid situations like the one above. SO ..... really difficult to say what works for each person -
Patience isn't one of my strong points so had to learn the hard way !
I do hope things work out for you. 5mg isn't too bad a level so maybe stick with it until you start to feel ok and then reduce slowly.
Knock on wood, but no. I was at 4.5mg when I took the 2nd dose of Moderna on 3/26. The day after my arm was very sore and I was tired. But the following day I felt fine. I stayed at 4.5 for another week then started the taper to 4mg. Today is starting the 2nd solid week at 4. If no problems I’ve decided I try the next taper to 3.5 on 5/23.
I had my second Pfizer on Thursday. Bruised feeling in arm which is getting better. But the muscles at the front of my legs are really aching. It’s like I’ve been running or walking masses (which I haven’t) and doesn’t feel like a PMR flare. I’m pretty sure this is a vaccine reaction. Currently two weeks into reducing pred from 10 to 9. I was almost down to 7 at the time of my first jab but had to go back to 10.
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