Hi all! I have had PMR and been on prednisone for about 2 yrs, 4 months. I have been tapering by 1/4 mg. every 2 weeks. I'm currently on 1.5 mg, and as soon as I went to 1.25 mg I started getting classic aches in shoulders, hips and neck. I consider the pain relatively mild, but it's there. So, I've gone back to 1.5 mg intending to stay here for a month or until I feel no pain, but am worried that I am going to have a flare. What do I do when feeling some stiffness but don't think that it is enough to be considered a flare? Follow the flare protocol to flush out the inflamation by increasing by 5 mg? Sticking at 1.5 mg and seeing what happens? Increasing just a bit?
Last year December I got down to .5 mg and as I reduced down to .25 mg, I had a bad flare. I didn't have success with the flare protocol, and after struggling I landed at 4 mg and have been on a slow taper back down for the past 14 months. I'd really like to avoid having to increase and start again from a higher dose. Thanks in advance for any suggestions.
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I'm 2 years 5 months in and have had to slow down the tapering as I've got lower- just moving to 2mg after over a month on 2.5mg. I've used 5 or 7 week tapers (half mg each time). I've found a 5mg increase for a week has dealt with flares and then I've dropped down to the same dose but just stayed there a bit longer before trying to reduce again. Good luck!
Every journey starts with a single step - and every flare starts with it just being a minor niggle that tries to kid you into thinking you can manage this and you keep tapering. And then it hits!!
You have your warning signs - heed them NOW, don't tempt fate. Make sure you are at a dose that feels really good and take a holiday from tapering and worrying for a couple of months. Then try the 1/4mg again. At this stage we say the lower the slower - and really mean that, sometimes you need a couple of months to know you are still doing fine.
As long as you are taking enough pred for each day's added inflammation you shouldn't flare and it does pay to be extra careful. 1.5mg is such a low dose there is nothing to worry about - but it isn't such a low dose that it isn't doing anything, even 1/2mg has been known to be the difference between being fine and not. But if you can feel any symptoms that you know are YOUR PMR, and aren't sure, always have at least a few days at the higher dose for a flare to clear things out. But if you need that, don't go back to that previous dose, do one above, and leave a bit longer to the next reduction step. You are doing brilliantly.
At just over 2 years there may well be a lot of life left in your PMR [despite what you may read or your doctors may think] so maybe just give yourself a break from reducing for a while. Listen you your body, as it’s obviously telling you you’re trying to reduce too quickly.
Hopefully the month at 1.5mg will prove to be enough to get things back under control.. but I’d stay there for about 3 months to be sure.
And even though you are reducing in small amounts, if you go below the level of Pred your PMR requires you will struggle.. it’s easy to assume that 0.25mg won’t make much of a difference - for some it does.
As for failing with the usual protocol for previous flare , then that just re-iterates you had gone much too low and had unknowingly allowed the inflammation to ramp up again. Don’t let that happen again.
As we say almost on a daily basis - the Pred dose not cure your PMR -it’s only controls the inflammation caused by your PMR, and it’s not a cause of take the Pred and it’s easy-peasy. You are not reducing relentlessly to zero, you are tapering in a timely manner trying to find the LOWEST dose to manage your disease until is goes into remission. It will do that, but in its own time..just be patient.
I can give you one of my Tee shirts for this.! All has been said so heed the advice. I've been where you are four times or so over the past 7 years. The problem is, the more times you overshoot or flare the harder it becomes to get back down to where you were. If you can reliably be at 1.5mg after a couple of years celebrate that and sit at that dose for a while. Autoimmune illnesses are fickle. Your Pred dose is very low so don't poke the sleeping bear.
Thank you all so much for your thoughtful responses! I’ll stay at 1.5mg for 2-3 months. While here, if my aches increase, I’ll jump up to 5 mg for the flare protocol. Such a delicate journey!
Hello. think that when you stabilize and are ready to decrease the dose again, that you could experiment with tapering more slowly. If 1/4 mg per 14 days hasn’t worked, you could try 1/4 mg per 28 days for example.. In my case, a decrease of 1/4 mg per 21 days at the below 3mg worked whereas quicker than that did not.. For sure, every case is unique. Keep calm & carry on
I agree. A fortnightly taper especially at very low levels, is quite rapid, even if it is such a small dose. I took about three months to taper by 1/2 mg steps between 2 and zero, a whole year, and even that wasn't successful the first time I tried it! You can't trick PMR into remission.
Just wanted to share my current tapering story with you in hopes that it will be helpful. This group has been so very supportive with understanding that our bodies are all different and adrenal gland function is unique to each individual, oftentimes from one week to the next. I also greatly appreciated comparing our inflammation accumulation as a bucket that fills to the point where we have a flare up and cannot remedy it without increasing our Prednisone.
I have listened very closely to how my body responds to a taper even now at 1.5 mg. What is working for me may not work for someone else. I do still have tapering symptoms and don’t ignore them even though I have been told by doctors--at that low dose I should just stop taking it. Believe me I want to, but my body is in charge, as those of us who have struggled with PMR, flares and balancing our Prednisone dose know!
So here’s the method that’s working for me, and bar any other health issues I should be able to allow my body to take over without prednisone in the near future. I introduce my adrenal glands to the new lower dose 1 day during the week, say Sunday I take 1.5mg instead of 2mg. See how my body responds to it for a week or even two if necessary then sit with that until I feel it is handling the 1x a week reduction. Then I pick another day not too close, such as Wednesday and introduce a second lower dose of 1.5mg for a 2x a week reduction. I continue this tapering process with lots of patience as my body adjusts.
If my adrenal glands are not happy I stop the tapering right where I am, get some rest and TLC while I patiently wait for them. (I don’t set my tapering schedule aiming for an immediate daily drop, because at this low of a dosage it becomes more of a goal to successfully wean off the Prednisone -very slowly.) My adrenal glands cannot be rushed and in the past I had been listening to everyone else but them.
The greatest stroke of luck was finally finding a Rheumatologist that looked out for problems monitoring my progress all the while praising and supporting my ability to listen to my own body. Trust is so crucial to the doctor/patient relationship. I wish you well in this journey!
I have had PMR for 5 years. I have been on 1mg for over a year. I did still have mild symptoms, but I somehow convinced myself that I could manage without it. I think part of me wanted to find out for certain if the PMR was still there or if I was just feeling normal age related pains. It was a stupid idea and the Dr who always fought me for staying on Prednisone long term advised against it. Well needless to say it was an epic failure and I had a huge flare to the point where I couldn’t even walk. All that happened within 8 weeks time. I went back on 6mg for a month until symptoms decreased. Now I’m back to 2mg where I will stay for the foreseeable future and yes I still have those mild symptoms but they are tolerable. I think this is just going to be my new normal. I don’t see this ever going away so I just have to keep it at a manageable level and accept it for what it is. I won’t be experimenting anymore. Lesson learned.
I was where you are. I used to attempt a small taper and if there were any niggles I learned (the hard way) not to ignore them but to retract the taper. Eventually, after several years, I did get to zero successfully, but full disclosure, this was only after I had the shingles vaccine, Shingrix, which, possibly coincidentally, but I think related, seemed to enable me to complete successful tapers - at the time I'd been back up to around 7 or 8 following a major flare, and had been for quite a long time. It still took a couple of years but from then on the tapering was successful (done v e r y slowly). So there is still hope, although probably not for a while. 🍀
This is a bit of a side Question but I'm intrigued about how you taper a 1/4mg? As far as I can find out my chemist only dispenses Pred in 5mg, 2.5mg or 1mg tablets. Many thanks
In Canada we don't even have 2.5. So cutting 5s and/or 1s is a necessity! We don't have coated tablets either, so that isn't an issue, which it is for some in the UK.
In theory we do have coated versions in the UK. In practice they’re rarely prescribed as they cost a lot more & ultimately they come out of the budget for the Medical Practice.
I see you've had lots of great advice. As further reinforcement here's a quick outline of my story:
Started pred June 2015 at 15 mg. After a month reduced at doctor's instruction by 1 mg a week, also told to stop reducing if pain returned. Pain returned at 9 mg. I went back up to 10 after researching in the middle of a sleepless night (Dr was away) and stayed there for about three weeks. After that I started a slow taper plan (specifically Dead Slow Nearly Stop) and used this for the rest of the following years, with some variations (like tapering by only 1/2 mg after I got to 8). I was at 3 mg at the end of the first year, which is very fast, but it took another year to get to 1.5 and that proved to be too low.
The relevant part for you is when I got to 2 mg I found it impossible to go lower without the niggles. This went on for several years. In 2019-20, I tapered from 2 to 0 by repeating each step of the slow plan twice, three months for each step. Having read of other people who had been slightly uncomfortable as they tapered off but felt fine after a few weeks I attempted this. Within six weeks I was back on pred, still at the old low dose. I attributed my continuing pain to osteoarthritis (which I do have) but in few months realized I was beginning to feel just like I did before treatment. Also my CRP was higher than it had ever been. A return to 10 mg was needed, although I got down to 8 quite quickly, and stuck thereabouts for a while. Eventually I was able to taper again and achieved zero pred just over a year ago, Feb 2024. Since then, despite various stresses, I've not had a return of PMR symptoms, unlike 2020-21, so my PMR plus pred journey lasted 8.5 years!
The several years at 2-2.5 mg seem to have done no harm, my adrenal function is fine, and during those years the small dose gave me a good quality of life in terms of being painfree and active.
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