When to start taper

My PMR attacks my left shoulder joint more than any other part of my body. I have been on 15mg Prednisone for nearly a month, and I do still feel very slight pain there (and only there) in the early mornings (the worst time of day for PMR symptoms because the body starts pumping out Cortisol to prepare for waking). This suggests to me that while the Prednisone is doing its job, the PMR is still active in my body.

I am due to attempt my first taper in about a week, but like you I am curious if it might be too soon given that my PMR symptoms have not 100% disappeared. I really want to start getting off this stuff ASAP, but not if doing so too soon ends up keeping me on it longer. It's a tough balancing act.

I will try to remember to post back here after the consultation and guidance from my rheumatologist in about a week.

@superfly999 Thanks for the reply! My left shoulder is also the worst, but my split dose plan is working well enough that I can deal with the slight stiffness in the morning. I really need to know if all symptoms should be gone before a taper is attempted.

I found the article below helpful. Most of the protocols are variations on the conference held in 2015 (international) to establish treatment and diagnostic protocols.
https://pubmed.ncbi.nlm.nih.gov/26359488/
https://www.ncbi.nlm.nih.gov/books/NBK537274/
Welcome to the club! This disease is beatable. Tapering speed and amount is highly individual. But, tapering too quickly is dangerous and invites flairs and adrenal insufficiency issues. It is a marathon, not a sprint.

I always wondered what a flair or "too much" pain was. I was informed, via this forum, that a flare is any pain that is intense enough to think it has come back and that pain has not abated after a week or so, and seems to be getting worse.

Some pain and stiffness in the AM is normal and some pain for a day or two after tapering is normal but you have to be the judge of this. Complete freedom from pain during the process is rare. The best freedom from pain I had was being on 15 mg for the first month. I literally have never felt that good in my entire life. I could do anything without pain or stiffness during and after the activity. That was a delusion and not reality. Reality is that some pain of all sorts comes into life on a daily basis.
Good luck.

@superfly999
Hello. I'm 73 and almost three years into PMR. Going thru the same thing with my left shoulder.
I was down to 1mg for approximately 3 months, hoping to come off Prednisone completely until a slow flare up. Starting in my left shoulder then to both arms and my neck. Went up to 5mg but left shoulder stayed refractory until Prednisone was increased to 10mg. My MD wants me to check in after two weeks on 10mg. This disease definitely brings discouraging moments for me.
It feels like the 10mg is just barely enough. My concern now is how the tapering resumes.
Best wishes for success on your journey.
Ernie

I have a few more comments on tapering and when to start. Pain subsidence with prednisone initial dose is a good marker. But do not forget about getting your CRP and ESR tests before the 15 mg initial dose and then after you are feeling better on prednisone (at subsequent doses as you taper). Getting them every two months or so can be helpful and is what my primary care Dr recommended (I am not with a rheumatologist). I found that at whatever the prednisone dose I was at when blood tested (I am at 3 mg now) the markers were at normal ranges. So, at 15 mg I showed normal ranges, at 9mg I showed normal ranges, and at 3 mg I am showing normal ranges. This information can be helpful in knowing if the PMR is remitting/abating at specific intervals of your tapering journey. It is a compliment to a daily pain journal.

@petermccarville So to be clear are you saying don't start taper until after I no longer have symptoms?

You ask if you should not taper until "I no longer have symptoms". Hmm? That is a tough one to answer because everyone has a different pain tolerance. Mine pain tolerance is high because I have lived much of my life with pain from Ehlers-Danlos syndrome. (FYI- I am a VERY active 63 year old male)

I followed the protocol that is outlined in the 2015 paper that I sent a link for. I did not have any symptoms of pain after the suggested month on 15 mg (my start dose). Maybe an odd one here and there but nothing like my first month or so of no medication, prior to diagnosis. I had that "cannot dress myself" pain and stiffness, "cannot role over in bed" pain. Super debilitating. The month on 15 mg prednisone took 99% of that away. My first three hours on prednisone cut it (the pain) in half. After a month I got a full benefit . AND my CRP and ESR blood markers showed no more elevated values. It was as good as it was going to get, is how I felt. I could do what I wanted. Granted the prednisone made me feel kind of weird. Like someone else was in charge of me. I had a slight hand and inner body tremor too.

I am not sure how long you have been on your primary dose, nor what that dose was/is. And, I do not want to direct you as to what to do. You and the dr need to go thru that discussion. I just know I was ready to start tapering.

I was scared to start the taper as you might be. I did not want that terrible pain and debilitation to come back. But I also knew/know that high dose prednisone is not a place to "camp out".

I tapered from 15 mg to 12.5 mg after a month as recommended by the 2015 study's protocol. I felt it immediately that I had gone down in dose. That is when I asked the folks on this platform about flares. Was I having one? I did not feel back to square one where I was before prednisone but I did feel some morning pain and stiffness. Maybe 10% of the pre-prednisone pain/stiffness. It was suggested by the great people on this site that I give it a week at 12.5. Take some tylenol and hang in there they said. I did and it gradually went away. I adjusted to the 12.5 mg.

I continued to follow the 2015 protocol (settled on this after discussing with my Dr). The next drop was to 10mg after another month on 12.5 mg. Same "adjustment" occurred (ie a few days of slight stiffness and pain). I am now at 3 mg and continue to follow the protocol with some slight modifications in dosage and time on each dose. I have stopped having the rebound of some pain as I did the first two to three taper moves. For example, from 5 mg to 4 mg I did not have a rebound of any pain but I am still clearly worried or concerned at every taper drop. Hope this helps.

@petermccarville Excellent information -- thanks.

@retiredphil
I am curious about this too.
I am an active 73-year-old. First PMR 2014. Treated w/Prednisone, relapse in 2015. 18 mo total on Pred. including taper. Flare in Dec 2024. I tapered til mid Aug. I don’t know how long I stayed at 20 mg before tapering!? That’s what I’m curious about now because in mid-Nov I relapsed. I tried controlling it with diet and supplements but fell short so back on Pred. again. I got the blood work done but had enough Pred. To test how little I could take before I could function again (17.5 mg). Does anybody know of studies done about duration of top dose and length of tapers as they impact relapses? I too am working on this together w/my PCP and a naturopath (for dietary support) not a rheumatologist.
Good discussion!

I have a. question….I have tapered (since March 2025) from 15 and now down to 2 mg/ day. Is it better now to break the 1 mg in half and drop to 1.5 mg/ day or to “ pulse with 2 mg, 1 mg, 2mg, etc as I continue downward?