I have been carefully and successfully tapering since the autumn. I am now on 5mg and this coming weekend I start going down to 4.5.
I have just received an invitation for my 6th covid booster shot, but every booster shot so far (and my flu shots) have made me flair. I have never had covid myself even though I nursed my sister and my husband through it (although my husband thinks that I must have had it asymptomatically because he cannot understand how I escaped it). I just want to keep on going nice and steadily down, and am therefore tempted to to ignore the invitation. My husband thinks I am mad.
Your thoughts please.
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jinoadby
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I can’t advice you one way or another, but I am at a similar stage in my taper, having just finished tapering from 5 mg to 4.5 mg. I am getting my 6th booster shot tomorrow, but they have never made me flare. My symptoms have mainly been a sore arm and twice, feeling like I was coming down with the flu for a day or two. The last time, I took a Tylenol the night before and then the morning of my shot, then took one later that day and I believe the next morning and I was symptom free, except for having a sore arm. I will do the same tomorrow. Good luck on making your decision - it’s a tough one. I can’t say for sure, but if the Covid boosters had caused me to flare, I still think I’d get them as I really don’t want to get Covid, or any other virus while on Prednisone.
I was a bit anxious about my last booster after reading on here, but went ahead with no problems at all. I am going ahead with my next one on the basis of not wanting covid to knock me over should I get it!! I think we have to make decisions according to our own circumstances.
Had my booster jab last week (6th? i'm beginning to lose count). A sore arm and I felt a bit grotty for 24 hours, but otherwise fine. My personal view is to accept any jab that is offered, but of course it is an individual decision for each one of us.
Thank you all. The trouble is I have been more stable for the last six months than at any time since I started, and it is quite restful. I am not problem free, I am having the dreaded adrenal fatigue but I am coping with it quite well. I just feel like I want to carry on cruising along.
Definitely an individual choice. I had the initial 2 doses (Moderna) in 2021. Then got Covid about a year later. Fairly mild lasted a week. And I have chosen no vaccines since. I am on Actemra every 2 weeks and have been fine. Am working part time, have traveled and socialize moderately.
It's each one of us to our own - you have to make your own decision. Boosters have made me flare so I am going to give it a miss. Good luck whichever way you decide.
I had mine last Friday and no problems apart from a sore arm. You could try staying on 5 for an extended time. In the whole scheme of things a few more weeks is preferable to a flare and more yo yoing.
No 6th jab for me. I had covid last Nov, like a bad cold. Recovered fast. Jabs make me nervous as I got pmr after being talked into the shingles jab 7 years ago 😫
better a flare than covid...even though having a flare is so challenging physically and emotionally...you know what to expect from a flare...on the other hand, covid???
Clearly, it has to be your choice. But, going on previous experience:
* Vaccination -> flare -> more prednisolone -> flare suppressed but greater risk of side effects. (All medications come with side effects.)
* No vaccination -> perhaps more severe illness if you catch covid, but based on your previous experience, possibly nothing at all.
Unfortunately, for those of us who reacted adversely, most people seem to take vaccinations without ill effects and their experience is relatively meaningless for us. (My PMR was triggered by my first 2 Pfizer vaccinations, so I have refused any subsequent covid vaccinations.)
How recently were you looking after people with covid? The chances are that gave you a 'live virus inoculation', which would add to your immunity.
Ditto ditto! I could have written your post. At the moment (and I could change my mind) I am avoiding this Spring booster and will take the Autumn one if and when offered. My husband thinks I am mad too! I have asked my Rheumatologist and my GP but that was a bit unfair as what can they say.
I have reacted with a flair of varying degrees to all but the third which was the Pfizer. No 4 & 5 were Pfizer and I got a flair. The flue gave me a fever for a couple of days then I was fine. I have also had Covid confirmed twice and possibly a third time at Xmas.
I just can’t deal with another flair but………? Better than being frighteningly ill with Covid?
Thank you all. I have decided not to have my booster shot. I am at the stage when I am coping fairly well with the side affects of my adrenals waking up and and I don't want to put any more strain on them. I will have my autumn shot if offered, and take care when I am out and about. Keep well.
I had 3 no problem shots of Pfizer. Then 3 Spikevax. All 3 made me flair and the latter one left me with a permanent aching arm. Have booked 7th but want to see GP first and also know which booster it is. Hope all goes well for you 😊
Hi. 5.5 years in with PMR, tapering very slowly. I have had three covid jabs and didn't get any side effects apart from the usual sore arm. I feel I was very lucky. I am not an anti vaxer and never will be. I know I did the right thing... however, I now personally know five very different people, ( from different areas, with differing specialists who have had their 4th jab and 4 of them developed PMR and one has another auto immune reaction whereby she is losing her hair. The specialist in this case is an eminent skin specialist in London who has said that she has seen a huge increase in these cases and it is her expert opinion, and that of her other medical colleagues, it is as a result of, in particular, the 4th jab. In each case the rhumy or Dr have said (off the record) that they are seeing it a lot because of the strain it puts on the immune system. So ... am I having another jab? No. I feel I've done enough. As I say, I am NOT an anti-laxer, and I can't understand those who are .. but in my case, enough is enough. Please no negative feedback, its enough having to deal with this condition. I am merely expressing what is happening around me, with people who I know.
totally agree with you. Got PMR after 4 th or 5 th booster but think it was hovering about in a mild form for two years prior. So no more boosters or flu for me as to best of my knowledge never had ether
There is also some new research out showing increased auto immunity problems after covid infection therefore it needs to be considered in the round and certainly worth discussing with medical teams.
I was diagnosed in August 2022 and am now down to 4 mg. I have done very well until I went from 7.5 to 5 mg and then a month later from 5 mg to 4 mg. Though my inflammation numbers (SED 2, CRP 2.7) continue to be low, I have had more stiffness and pain in pelvis, hips and knees than anytime since I started on Prednisone.
I am assuming this is because my adrenal glands are sluggish after being off for so long. I am meeting with my doctor soon to discuss this and plan my next taper. I am thinking of decreasing by 0.5 mg (not 1 mg) to 3.5 mg. I am definitely not getting the next Covid booster - that is what triggered my PMR. I am not even considering another Covid booster or any vaccines until my PMR is in remission.
I know it is a tough decision - good luck all! Wishing everyone good health and healing!
Could be adrenals stuttering-but also sounds suspiciously like your PMR grumbling -so just monitor and don’t let it get out of hand or you’ll need an increase in Pred.
As for bloods, they very often lag behind symptoms…
Thank you for your response. I went 5 weeks instead of 4 weeks when I decreased from 7.5 mg to 5 mg and that last week things seemed better. Maybe I should drop down by 0.5 mg and stay longer at the new dose say 5 or 6 weeks? Give my adrenals a chance? What would you suggest? Thanks so much for taking the time to reply and for your advice and support. Best, Ginger
7.5mg to 5mg is a big step -so no wonder your body thought “wow what’s going on?”
Much better idea to do 0.5mg steps from now on-and stay at each dose longer -or try one of the slower tapering plan. Adrenals like slow and little steps…. As does your PMR when you get below 5mg .
Couple of slow tapers - much of a muchness but slightly different approach -
If you dropped directly from 7.5 to 5 that is a change in dose of 33%, more than 3 times the recommended 10% maximum recommended taper step. And ALL guidelines say only 1mg at a time below 10mg. The body is always likely to protest at that size of change when you have been on long term pred.
I was concerned but was doing so well that I didn't argue with my doctor. Now, I am definitely going to ask him to slow down! Going to suggest I do 0.5 mg for at least a month and see how I am doing. If I am still feeling discomfort - I am going to stay at that dose until I feel good. Thanks for your comments and support.
Ah yes - but it is always a sudden change of direction when it happens and the lower you get, the nearer it is going to be! Even 1/2mg can be the differentce between being fine and not ...
Hi. I'm sorry you are having such a tough time. However, that does seem like a big drop - know, unfortunately, from experience, that is a tiny drop at a time. It does take ages but it's worth it in the end.
As my rheumatologist thinks the Covid vaccines (2) triggered the PMR, I was told NOT to take any vaccines without talking to him. So, I have not had any boosters. Not much help to you, sorry.
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