Following my last post, I have change my regimen of further tapering of prednisolone.
I was going to alternate 0.5mg and 0mg till the end of July 2022 and stop taking the prednisolone.
I decided to take the plunge and test the functioning of my immune system . Therefore I have been on 0mg for the last 3days and still feeling good.If I did have a flare what would be the recommended dose to go back to.
Many Thanks.
That's another "how long is a piece of string" question..😉
If you still have disease, it depends on how long it takes the build up of inflammation to be enough to cause a problem..i.e. return of symptoms. and (like at the beginning of the journey) varies from person to person.
As for dose, again that varies...0.5mg may be enough if the inflammation is slight...and you catch it quickly. Anything between that and 5mg if you leave it too long.
Unfortunately it's not an exact science...if it was, we could all get it right first time around.
Thanks for the reply. I guess with PMR, its trial and error towards the end . I was going to continue with 0.5mg for another while but I had to ask myself: how do I know when to stop taking the prednisolone. I could go on taking for another few months and when I do come off, there is still no certainty that PMR might reoccur again! So I guess I want to try without taking the prednisolone
Mmm - I do get your point BUT if you have had a few months at 0.5mg and then zero doesn't work you do have a better idea where it went wrong.
My tapering regime from the start of my PMR September 2021 was with the recommended guidelines 15 mg( 2weeks) 12.5 mg( 2weeks) followed by monthly, 10mg, 9mg. But from 8mg, I had a different regime, reducing by 0.5mgOn 6.5mg( Feb22’) Bloods CRP and ESR were normal
On 3mg ( May 22’) Bloods CRP and ESR were excellent.
Thereafter, still slow reduction till 0.5mg of recent.
I wasn’t in a rush to come off the steroids, but am testing my functioning of the adrenal glands and how well my immune system is coping. I guess its trial and error
PMR that started in Septemer 2021 wouldn't often have gone by now - under a year is very short. Was it in response to having a Covid jab? But it also means adrenal function is more likley to return to normal quite fast as well.
Fingers crossed - as DL says, not all aches and pains are PMR. But if it does reappear, don't be in denial. Good luck
That’s right, symptoms of PMR was only after getting the Pfizer vaccine in Mid- July and 2nd dose in Mid- August 2021. I did very much struggle on till I decided to see my GP on the 1st of September 2021. From my presenting symptoms, he knew straight away most likely PMR.Had bloods done next day with very high inflammation markers (ESR and CRP). Perhaps, he had other patients with the similar condition after receiving the vaccine.In my journey with PMR, I have managed to keep well without any flares and have been cautious reducing the prednisolone with the help of blood results.
If I stay well, I will get bloods done in August 22’, to check on my inflammation markers.Hopefully, please God, my immune system is functioning ok🙏🏼
It could represent a reactive form of PMR - though it COULD be a reactive arthritis with a polymyalgic presentation. That is usually in respnse to a bacterial infection but the SARS Cov2 virus is a law unto itself. I think there may be a reactive PMR - that's where the shorter versions arise.
Hopefully that’s the case in my circumstances. In fact in September 2021, I filled out forms complaining of my adverse effects of the Pfizer vaccine to the Health Regulatory Product Authorities, in Ireland.They took note and made contact with my GP. I never heard from them thereafter. I guess my complaint was put on their statistics and that was the end of the matter.To me, importantly, if I can stay well without prednisolone, it will be a great achievement.
Fine -time will tell -hope all okay….. and remember not all little aches and pains are PMR.
I hope to ride out the storm.Many Thanks
No definitive answer I fear! It depends to some extent on how much residual inflammation there is - if there is none it could be months before it builds up to a level you can feel, if there is already some inflammation but not enough to cause symptoms yet it could be much sooner. And it also depends on how active any residual a/i disease is - the more active it is, the more daily inflammation is dripping into the bucket. I have known people who had symptoms return in a few weeks - others for whom it took 6 months.
I suspect the activity forms a sine wave - and while it is on the way down it is easy to reduce the pred dose but then it increases again and the dose you had got to with the wind behind you may not be enough. But that applies all the way through.
That's why we recommend going REALLY slowly at this point - even at the low doses of pred the same applies and you may really need 1mg but you haven't been below that long enough for it to manifest before you stepped down again.
If it happens and you are confident 1mg was enough then a couple of days of 5mg before dropping back to 1mg may do the trick - it really is suck it and see,
Thanks for the helpful information
Good for you! After 11 months, I was off Prednisone…..I felt blessed but vulnerable. I took very good care not to over do anything…..I ate well, napped, de stressed. A twinge in my arm or back, I took an aspirin, etc. Fatigue was still a problem so went with it….never pushed myself. Worked for me….but I eliminated as much stress as possible.
I hope I can be as successful as you. Time will tell.Take care and best wishes.
Because the possible cause of your case of PMR may be different from what we oldtimers have experienced advice may not be entirely relevant. But for what it's worth.: In 2021, when I'd been on pred for about six years, I was in the process of tapering from 2 mg to zero. It had taken me a year to get to zero, doing much as you did, in .5 mg steps, but taking three months for each step. I seemed okay. I stopped pred. I got, as I somewhat expected, some PMR symptoms quite quickly, and hoped they were only pred withdrawal. Six weeks later I decided enough was enough, I couldn't carry on as I had been, pain had really built up. I don't remember exactly what dose I took the first couple of days but for a number of months I was back where I'd been for several years prior to this adventure, which was around 2-2.5. (So much for that year of careful tapering!) I was okay there for quite a long time, but eventually I had a real flare, a rather intransigient one, and it took a long time for me to get back down again. I have posted elsewhere that in my case I believe the vaccinations helped me. Not Pfizer which I first had when I was already flaring and seems to have been a bit of a non-event in relation to my PMR, but I also had the 2-dose course of Shingrix; after each dose my difficult taper suddenly seemed to go more smoothly, Then a second booster, this time Moderna, and lo and behold I'm now as low as I've been for a couple of years and no PMR symptoms!
If I were you I'd keep your vanishingly small dose on hand and any sign of PMR symptoms would have me taking a dose, maybe only 1 mg, depending how you feel, and not being afraid to carry on with this for a while. No symptoms after several days of no pred indicates that you are not getting any pred withdrawal symptoms so anything you feel would most likely be PMR inflammation building up again. It seems to me you are doing very well and it would be great if you are now home free!
Hi HeronNS,Many thanks for your reply and that’s true, my case will be very different from many of the members in the health forum. It’s not unusual but unique to have encountered with PMR in view of my demographics.
Furthermore my symptoms of PMR happened only after having the 1st and 2dose of Pfizer vaccine.Throughout my journey with PMR, I have been cautiously reducing the prednisolone medication and getting blood results to check ESR and CRP. Perhaps, I am lucky not to have had any of the
original symptoms of PMR whilst reducing the prednisolone medication.I believe it’s a trial and error situation towards the end tapering regime. I have been off the prednisolone medication for nearly a week now after nearly 10.5months on it and seem to be doing well. I have spare prednisolone just in case I need it .Hopefully, I can be successful in overcoming this medical condition of PMR.
Thanks for your kind thoughts. Best wishes.
Very interesting. I do hope that some record is being kept of cases such as yours. PMR is, by definition, a diagnosis of exclusion. Sometimes the symptoms are actually evidence of another disease, and what we call PMR is what's left after all known causes have been eliminated. In all likelihood you have indeed had a vaccine reaction and hopefully have now seen the end of it! 
All the best!
Thanks
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