PMR Dosages and Managing Symptoms

I have my own theory based on the many comments I have read and from my own experience. Apparently, every GP remembers the day in Med School when they were all told that Prednisone was very toxic and the first thing they should do as Drs is start tapering and taper very aggressively. They make two mistakes from this training; the first is that the initial dosage is usually too small and the second is that they start a downward taper too soon and too fast. On the other hand, you have rheumatologists who understand the initial purpose and goal of Prednisone which is to reduce pain and inflammation to zero! Only when SED and CRP lab tests AND the patient's report of perceived pain indicates that all of the inflammation and pain are gone will they decide to reduce the dosage. Then and only then will they start a tapering schedule but the likelihood will be that the taper schedule will far less aggressive than most GP's would urge. When you understand that the original goal of the Prednisone is to make the pain disappear, why would you be satisfied with anything less than a pain score of 0 or 1? Next, since you will be on Prednisone for 2 years (or more) take out a calculator and compute the total Prednisone taken over those 2 years based on two assumptions. The first is the approach of a GP but you have to include several flares where you have to repeatedly return to a higher dosage because you have tapered too quickly. The second is the the rheumatologist approach which has a higher initial dose and a much slower taper but far fewer flares which actually means lower cumulative totals for Prednisone plus the added advantage of no pain. Remember the very old TV ad about auto repairs that went "you can pay me now or you can pay me later" meaning that when we finally are finished with this horrible disease and this horrible treatment, the total we will take will be about the same so do you want pain or do you want relief?

It’s been a while since I contributed on the PMR threads due to the tapering going well. To recap my tapering from 10mg I have been dropping 1mg every five weeks and has been predominantly pain free other than my R knee which has been X-rayed but no results yet. I am now on 5mg and dropped to that eleven days ago but am experiencing quite a bit of pain (scale of 6) in my L shoulder from first thing of a morning. It (and my knee) does ease off during the day but the shoulder pain remains although it is bearable. I do not take any pain relief at all, my choice. I am hopeful that it will eventually settle down before I get to reducing to 4mg. Seeing the rheumatologist on the 27th October and will discuss it then. Keep safe everyone.

I was diagnosed with PMR right after my 70th birthday - I am under the care of a great rheumatologist who listens to what I say, and has no problem with me talking to others who also have this issue - My understanding is the goal is to find the lowest possible dose of prednisone to keep you comfortable, and not to try to make the goal zero - hoping that you might get there. I use the DSNS method of tapering, and it works well for me - in these last 6 years, I have had 2 major flares - once from tapering way too fast, and once from standing in the middle of a fire ant hill. I am now tapering from 5 mg per day to 4 mg per day - I am pausing for a few weeks at 4.5mg. I have found in the tapering process, my body rejects my great idea of tapering and I experience some mild symptoms of a flare - night sweats, extra stiffness in the morning, greater fatigue, etc. I have learned over these years, that if those symptoms don't get much worse it is not a flare, and if you baby yourself a little, they eventually subside and if you wait awhile, you can begin the tapering again. This is my experience which I am sharing in the hopes it might help you in your journey. Take care and good luck!

I too find this. I was diagnosed with PMR at 59 yrs old. I have been dealing with it for 10 years on and off. So far I have found trying to keep to an anti inflammatory diet, helps when going through a flare up.

Yes, an anti inflammatory diet would help. Thanks for mentioning that.

I was wondering how everyone who has been dealing with PMR for a while now manages their Prednisone dosage. I just got diagnosed at end of December 2021, so a newbie. I am being treated with 12.5 mg Prednisone and will check my levels end of January. The 12.5 mg dosage helps tremendously from where I was without meds but I still have some pain and stiffness but manageable. I opted not to go up on the dosage in order to eliminate all pain completely and figured I would just deal with some pain. Is that approach wise or should I eliminate all the pain in order for this to work and get me slowly down in dosage and then off Prednisone completely? Net net question: should the meds eliminate 100% of the pain now in order to eventually be pain free without the Prednisone?