Booster effects

[Daisyharper]

Has anyone else’s PMR got worse since they had the COVID booster, mine is just like at the beginning of 2014 when I was first diagnosed. I am currently on 6mg of pred.

[Seacat30]

I had Pfizer on Friday morning. The painful arm and tired feeling have gone away now. My body doesn't feel good but I think that might be due to the persistently wet, windy, cold weather rather than the vaccine? Which jab did you have when?

[Daisyharper in reply to Seacat30]

Hi I had first two Astra Zeneca and the booster was Pfizer, wondering if I should up my pred!

[Seacat30 in reply to Daisyharper]

Same combination here. Have you given the vaccine effect, if it is that, enough time to go away?

[PMRpro Ambassador]

I had the Moderna jab for the first two - the second caused a flare with pain for a few days but then it was more fatigue. However, since I had the booster which was Pfizer I have actually felt better and been able to to reduce as I had increased the dose over the summer - though it is difficult to say if it was the vaccine or the fact my husband was seriously ill and I was doing far more than I would ever want to. He died at the end of October and since then the PMR has calmed down and I can reduce again.

I wouldn't increase the pred yet.

[Daisyharper in reply to PMRpro]

Thank you

[Pinkpepper in reply to PMRpro]

I’m so sorry to hear of your loss xxx

[Daisyharper in reply to Pinkpepper]

Thank you

[lkcreedon in reply to PMRpro]

So sorry for your loss xx

[Daisyharper in reply to lkcreedon]

Thank you

[DorsetLady PMRGCAuk volunteer]

There is plenty of information in the FAQs and related post about this, but as others have said give yourself a bit of time to recover from vaccine before upping Pred.

Guess you taken paracetamol and followed usual advice following vaccine.

[Daisyharper]

Thank you, my husband passed away in September, so I am generally struggling, it is two weeks since my booster and the pain in my thighs isn’t getting any better.

[Daisyharper]

Thank you, no I will take paracetamols now though.

[powerwalk]

I had some kind of flare, went back to my pelvic girdle/hip issue, could hardly walk. I can only think it might have been the vaccines? I let go for few weeks but it wasnt getting any better so i increased my pred for about a week and it settled. See how you go. Hope it settles for you.

[Daisyharper in reply to powerwalk]

Thank you

[Hidden]

Not sure really as I was tapering 7th day of 6mg Had booster 10 days ago had bit of temp for few hrs but felt fine, that night woke up with sore arm that day, then 3 days later hip leg back pain where I was taking co cordimol in the middle of night. My first 2 I had az and booster pzfier so not sure if my pain is from tapering or booster

[Smallstepsforward]

Hi there - my rheumatologist has said that he thinks that my PMR may have been triggered by a 2020 covid infection. Then exacerbated by the 2 vaccine doses. I’ve been advised by him not to have the booster for the time being. I’m seeing him on Friday to review things - amongst these what to do about the booster as it’s a bit of a damned if you do and damned if you don’t situation.

[Oldfogie]

I have had real problems after each 3 Covid jabs and even the flu jab. Aching limbs and terrible fatigue. Roughly 3 months after the 2nd AZ jab I started to improve and by September was making good progress then in Late September I had the flu jab and the next morning I was in agony. I had my 3rd Covid jab on 5th November (Pfizer) and things got much worse again. I saw my Rheumatologist last week. Bloods fine - I’m just unfortunate. He’s recommended a short, sharp increase of Prednisolone from 4mg to 10 for 7 days, then 7.5 for 7 days then 5 and stick to that with fingers crossed. Before the 3rd jab my antibody levels were checked and they were minimal. I’m dreading my next one in May! Apparently there are people worse than me after each jab but it is so important to keep having the jab for whatever protection it may give.

[Daisyharper in reply to Oldfogie]

Thank you

[Viveka]

Yes. I GCA flared after third primary Phizer. (It started after first vaccine AZ). Have gone up from 6 to 15 and am desperately trying to stabilize here. My consultant said that he is seeing a lot of people flaring after vaccines and that it appears to be able to reenergise the immune response in some people. I sometimes feel as bad as I did in the beginning and certainly worse than much of the last 9 months. However, on the brighter side, he believes that it will lose potency after 4 to 6 weeks. (I feel it may be a bit longer.) Because I have gone up and settled on a dose I have to taper properly again but it may be possible to accelerate the taper if things go well, eg 2-3 weeks rather than 4. So it is a thing - could you try and talk to your rheumy about your situation? I would think perhaps you may need a bit of extra pred help.

[PMRpro Ambassador in reply to Viveka]

My Pfizer flare was pretty much gone after a couple of months - I had other, extra reasons for a flare though. All improving now

[Viveka in reply to PMRpro]

Two months seems about right in relation to the vaccine impact. Glad things improving despite all the difficult times. X.

[bresbo]

From what I've read it appears that over time the vaccine's protection against getting the illness declines, but the protection against the illness being serious is maintained. If that's true, then if there's a higher risk of a bad PMR/GCA flare than a bad case of the virus, then it might be worth thinking about delaying the booster. Everyone's different, I know. It's hard to judge what's right for each person. But if there are rheumies who are telling some patients to wait a while, at least that shows they've recognised we're all individuals.

[Viveka in reply to bresbo]

Some of us are more susceptible it seems. I think its about minimising risk. I would rather have isolated through the winter than had this flare and set myself back 6 months of extra pred. But water under the bridge now; as long as I feel reasonably ok, I'll take that.

[bresbo in reply to Viveka]

Yes, I understand. The hard thing I find is getting enough good information to compare the risk of suffering the virus with the risk of a flare. With the new treatment pills for Covid coming available, plus the fact that the jab significantly reduces the severity of the illness, I'm wondering about the balance. I mean, if we're all going to have to receive a booster every 6 - 12 months, that could be 2 bad flares per year for some people, with the prospect of never getting the pred dosage down. On the other hand, a relatively mild dose of the virus ... just thinking aloud.

[PMRpro Ambassador in reply to bresbo]

Not something I'd risk - I'll take a flare over the risk of Covid. Since our immune systems are compromised, I'm really not taking as read that I am immune, but the boosters do seem to be improving things for us.

[bresbo in reply to PMRpro]

My reading of the data is that in the absence of co-morbidities and with relatively low doses of pred (some say <6mg, some say <8mg) then the immune system is not compromised.

[PMRpro Ambassador in reply to bresbo]

But if you have an autoimmune disorder - you have a potentially compromised immune system. And there are no crystal balls about how future mutations will act.

[Viveka in reply to PMRpro]

It'll be down to individual circumstances. I agree with Bresbo - new treatments and the thought of this happening every vaccine is untenable. I would have been down to 5mg at christmas and may well have been off pred a few months later. I don't have any comorbidities; lungs and heart ticketyboo. I dont have children, I live in the country, I can see friends outside, everything is on zoom or teams. Now I'm flaring and, though fully vaccinated, worrying about my single christmas meal out tomorrow cause being on 15 means my immune system is compromised again. Will be wearing mask apart from when actually stuffing food in my mouth!

The other thing going through my mind is that a vaccine gears the body up to fight something but it turns out to be an enemy that is just visiting, hopefully like the Russians on the Ukrainian border, so it turns on the arteries again. What if it had a proper enemy to fight - perhaps this would make it do a proper job? (Just a theory).

Anyway I do not feel like moaning. There have been days in the last month when I experienced Dementors - feeling so ill existence is futile. Today I feel ok. Can't ask for more than that.

😊

[bresbo in reply to Viveka]

Regarding wearing masks. If you are sure that you don't have the virus, then wearing a mask has been shown to have no effect on whether the wearer will or will not get ill. Even Transport for London in its recent mask mandate conceded:-

"Scientific advice suggests that although face coverings are unlikely to prevent an individual from catching the coronavirus, they can help prevent someone who is infected from infecting others and thus help control the virus."

view.email.tfl.gov.uk/?qs=b...

So, Viveka, if you want to really enjoy your Christmas meal tomorrow, make sure that everyone there isn't carrying the virus, and you can all leave your masks at home. Cheers!

[Viveka in reply to bresbo]

I wear an ffp2 medical mask which is supposed to block 95 percent of virus? Will hang some decorations on it. X Interesting discussion.

[PMRpro Ambassador in reply to bresbo]

I fear you are out of date with your research. There are several studies that show the wearing of masks DOES make a difference, by reducing the amount an infected person spreads and also how much a person inhales. Providing the mask fits well. And a very recent piece of work from a German University, I think Goettingen, has shown that the rate of infection experienced by a person wearing a well fitting FFP2 mask, the minimum required by law in public transport here, is as low as 0.1% even after 20 minutes in the same room as an infectious person also wearing that type of mask.

We will have to learn to live with Covid, it isn't going to go away. But living safely with Covid will not be achieved solely by vaccination, non-pharmaceutical measures are also essential to reduce the spread. Large numbers of infections, especially in persons with deranged immune systems that are unable to respond appropriately and where the infection lasts longer than expected, are where new mutations develop. But vaccination to reduce that risk is also essential.

[bresbo in reply to PMRpro]

Yes, it was the Max-Planck Institute in Goettingen; here's the original paper:-

pnas.org/content/118/49/e21...

It's interesting that they are the first people recently to have come up with a significantly positive effect of mask wearing. One explanation I've read is that they are physicists, and that this research didn't involve real people (at least as subjects of the experiments :-)), it's largely theoretical and has lots and lots of really complicated equations. This means it probably has little relevance to real world scenarios. I mean, TfL's mask mandate, which I mentioned and quoted from, was only published a week ago. They are hardly likely to have ignored this new data unless they (and most epidemiologists) don't really believe it.

But whatever the case, we have to keep our eyes open for new information almost daily. My wife and I joke that people like you and I will still be debating the issues long after everyone has actually had the disease, and around 99.8% of us will still be around to tell the tale

[Boss302Fan in reply to PMRpro]

When I read some of the BS about masks not being effective I question the intelligence of those doing the study. If a mask has a proper fit and worn properly on a clean shaven person and is of the proper type (non-woven, electrostatic) it will reduce exposure to viral particles. More effective for those suspended in respiratory droplets but also for virus released as desiccated from evaporation of microwater droplets.

Before I believe that crap I want to see the quality test data for the mask.

Plain old surgical masks or worse, open weave cloth, ok, maybe the filtration isn’t effective enough to notice a difference especially if people insist on being in each others’ faces.

But tell me it doesn’t reduce viral load and I’ll tell them they’re full of it. Before they evaluate data they best keep other contributing variables (separation distance, crowd density, mask type, proper fit. Etc) static.

[bresbo in reply to PMRpro]

I was under the impression that auto-immune disorders (PMR, GCA, UC, Crohns, Lupus, RA, etc) are indications of an over-active immune system, not a compromised one. Hence the need to take either anti-inflammatories like steroids, or more targeted medications, that suppress the immune response. Sufferers of these diseases are usually defined as immuno-compromised because of the medications they take, not because of the disease itself. Once again, every individual will be different. If this new virus variant causes much milder symptoms than previous variants, there might well be justification in some individuals deciding that the risk of the illness is lower than the continued risk of jabs repeated once or twice a year ad infinitum.

[PMRpro Ambassador in reply to bresbo]

Not necessarily over-active, differently active, deranged.

But the point I am trying to make is that you don't know in advance whether a variant is more or less dangerous - no-one does until some weeks after it is identified. By which time, it will already be in the population.

[bresbo in reply to PMRpro]

Agreed. But by the same token, nobody knows if the current generation of vaccines are effective against a new variant. At the end of the day, we each have to have a trust in life, don't you think, and behave accordingly.

[PMRpro Ambassador in reply to bresbo]

There is evidence - according to Pfizer today - that the booster, the 3rd shot, provides good protection against the existing variants including Omicron. And they are working on the next generation.

[bresbo in reply to PMRpro]

Yes, I'd just read that too. So that's today's worry solved.

[Boss302Fan in reply to bresbo]

That’s true for any vaccine. It depends upon how much of the viral protein construct remains similar enough to have cross reactivity. In the case of the Sars-cov-2 vaccine which codes for all or part of the spike proteins the only way I could conceive of zero cross -reactivity is if that protein molecular makeup was completely different.

[Pinkpepper]

Yes I had a third vaccine last Wednesday and now my neck and shoulders are really painful.

[LBM1953]

I developed PMR after my second AZ jab in May and am convinced it is what caused my PMR so was a bit concerned about having my Pfizer booster on 20th November. However I have had no ill effects (to date), not even a sore arm. Wife had her (Moderna) booster yesterday and is in bed as I write. It seems everyone reacts (or not) differently.

[cranberryt]

I didn’t have any reaction to the jab initially. However, a week later my PMR was full blown. I had to increase my dose significantly and it took me 2-3 months to taper back to where I was. Because of my reaction, I am honestly nervous to get a booster.

[Jane424]

My first Moderna flared me and 10 weeks later I am still a mess.

[Whitner]

I had 2 Pfizer shots and one Pfizer booster and had absolutely no reaction other than a sore arm. I'm on 5 mg of prednisone. I hope you feel better soon!

[Boss302Fan]

I got Moderna and my answer is No.

[Daisyharper]

Thank you all for your helpful information, good health to everyone and hope 2022 is a better year, for me I am not sure it can get any worse !🙏

[humlies]

I had a really bad flare possibly as the result of a booster jab; I was totally put right by an amazing physio. Obviously it depends what the underlying cause is, and not everyone will be helped by this approach, but anyone living in south Devon is welcome to contact me, if you think this might help.