PMR Dosages and Managing Symptoms

Dr. Gupta (a UK PMR expert) now leaves many patients at 2 mgs. for years. Evidently there are few side effects and some benefits in reducing flares and the need to yoyo prednisone.

I was put on 12 - 15 mg pred almost a year ago - told to take 15mg on days I anticipated being more active, but target dose was 10 mg. Being on pred was a revelation as my horrible PMR pain was gone, and I was able to enjoy the hiking trip my husband and I had planned for our 35th wedding anniversary. I am grateful my husband found this site, as my rheumatologist seemed a little cavalier about changing dose according to pain or activity level. I read here - mostly thanks to Mentor John - that one needs to reduce gradually. So after initial euphoria over pain reduction and getting my life back, I have now reduced 1/2 mg at least a week at a time to 2.5 with little trouble. I also take methotrexate once a week. My doc tried me on Humira as he didn't think I was getting below 7 mgs of pred soon enough (this was maybe 8 months in). Did OK on it for 2 months - though injecting myself was bizarre - but when I had the pred down to 3.5 I had a terrible injection site reaction to the Humira. Pharmacist and Rheum thought perhaps reaction had been masked by higher pred doses. So no more Humira! We weren't sure it was helping anyway. The last couple of 1/2 mg increment reductions, I have actually gone down by 1/4 for 2 days (tough to split the 1 mg tabs Mentor John recommended into 4, but I do it for a couple of days). Rebound pain is real if I taper too quickly, and it's not a return of PMR pain. Pred rebound pain happens in different places for me than PMR pain - worst in my hands. I also read here - but didn't heed sufficiently! - that we can overdo with sports while on pred. That's been my biggest problem lately = all the strains and stresses I did without realizing it. I can't listen to my body with pred silencing any pain! So I wouldn't back off for a day or 2 as I normally would, if I had overdone a little one day. (I hike, bicycle, and am a competitive equestrian in dressage). So don't overdo as I did! Thank you to Mayo and our volunteers - super helpful info here!

I was able to get down to 7 mg of prednisone. I do have some pain in my upper arms when sleeping but once I am up and take a hot shower it is not too bad. My doctor started me on methotrexate but I have only taken it for two months so far. I went off it this week since I got my booster shot for Covid. I have been on prednisone for almost a year, I guess that is why he wanted me to get the shot. I also have an autoimmune disease CREST. For the last couple of days I am experiencing wrist pain in both hands. The right hand is the worst since I believe I have carpal tunnel. Hand and fingers numb and hard to bend. Heat seems to help.

Any suggestions?

Thank you so much for this group!!

Hi @kimmgb - You mentioned you also have CREST syndrome from what I understand is also called Limited Scleroderma a subtype of Scleroderma. Has your doctor mentioned any hand exercises to help with the pain?

Here's a YouTube video that you might find helpful -- Webinar: Improving Function of Hands and Face, with Dr. Janet Poole

Thank you so much John. The video was very helpful!

I was diagnosed around the end of April of 2021. I was put on 15 mgs of Prednisone and within 2 days my body felt 99% better. I could walk, get up out of a chair unaided and other things that had gotten so hard to do, I could now do again. I was told to try to decrease my prednisone gradually. Not knowing exactly what was meant by that, I decided on my own to go down by 1/2 a pill, once a month. That was a 2 1/2 mg per month decrease. Well, I got down to 5 mg. and my pain was back. Not as bad as when I started, but it was painful. I called my doctor and he said go back up to 7. He called in 1 mg tablets for me. I went back to 7 but still had pain. On my own, I went to 9 mgs.
What I want to know is with the prednisone, are you supposed to be pain free, or just good enough to manage . I still have pain and feel sluggish. I am not myself. When I was at 15 I felt much better. Now I can still feel aching if I don't move around regularly. After sitting for a while, when I walk, my legs feel heavy. Not really painful, and getting up doesn't hurt, but I don't feel right. Any ideas??

There is no science in tapering off prednisone - only suggestions. If it was known how prednisone works to decrease the pain, then we could have a better idea on what to do in getting off the drug. Is there anyone that has a reference showing how prednisone exactly works? Exactly how does it decrease information?

@floridabonnie, My rheumatologist suggested I keep a daily log of how I feel on a pain/ache scale of 1 to 10 with 10 being the worst and also what dosage I was on for that day. Then he also gave me scripts for 5, 2.5 and 1 mg prednisone tablets so I could easily go up or down by 1 mg. Everybody's pain scale is different but I only went down a level on the prednisone when my pain was a 1 or a 2 level and if the pain crept up I would stay on the level for a few days to see if it got better or I would bump it up by 1 or by 1/2 mg by splitting the 1 mg tablets. You also need to incorporate some level of exercise or movement/stretching to help along with eating healthy which can help a lot when you are tapering off of prednisone.

You might find the following discussion helpful:
– Tapering off of Prednisone https://connect.mayoclinic.org/discussion/prednisone/

Also, here is a good article on Medical News Today that offers some suggestions.
-- What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Thank you for your insights. Very helpful, after looking at the diet, it doesn’t sound too good. I’ll have to try some of it, but okra? Eww. The journal sounds like a fantastic idea! Thank you! I will do that. I want my energy back.

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?