PMR Dosages and Managing Symptoms

66 year old male, 6-0 204 lbs. Woke one morning early September and unable raise arms above head. Both shoulders involved so injury unlikely. Several days pass and weakness sets in. Felt lousy. PC doc suspects PMR. Orthopedic PA takes X-rays. Minor arthritis in shoulders and right hip. Orders 2-week prednisone cycle starting at 20MG and tapering. After 2 days symptoms gone. Lovin’ that pred. 2-3 days post cycle symptoms begin to return although mild by comparison. PC orders 7.5MG/day to see response. Symptoms again disappear. Referred to Rheumatologist. Slowly tapering. Now at 6mg/day and still no symptoms. Will drop to 5 after 3 weeks. Told not to drop below 3 until after next appointment with Rheumatologist. Fingers and toes crossed. Best wishes to all fellow warriors.

My rheumatologist said the last 2mg were the hardest to wean. I had gotten there after 5 years of trial and flare ups, then came up with GCA and dose is now at 60mg. Vision almost back to normal. no pain at all. I realized how much pain I was actually tolerating, feeling that as long as I could dress myself and get around I could tolerate it. I now realize the toll that was taking on the quality of my life and relationships . I know I can't stay at this dose, but guess I need to be more realistic about how much pain to tolerate vs the impact on my quality life.

These are just my thoughts on the subject of prednisone withdrawal because 40 mg of prednisone was what I started with when PMR was diagnosed. My rheumatologist wasn't too interested in telling me how much prednisone I should take. My instructions were that I should find a "stable dose" of prednisone that works to control most of my pain and other PMR symptoms. My rheumatologist only frowned when I reported back that 40 mg was the dose that worked to control everything.

I was not a stranger to taking prednisone when PMR was diagnosed. I took prednisone for other autoimmune conditions for 20 years before PMR was diagnosed. My ophthalmologist prescribed prednisone for uveitis which is eye inflammation associated with inflammatory arthritis. My usual treatment for flares of uveitis was 60-100 mg of prednisone. I was able to taper off in a month or two as the eye inflammation decreased and the body aches and pain improved. My ophthalmologist once made the comment that I was "skilled with prednisone tapers."

PMR changed everything I thought I knew about prednisone. I was diagnosed with PMR and took prednisone for more than 12 years prescribed by my rheumatologist who said my primary diagnosis was PMR with a "history of" inflammatory arthritis. The first thing I needed to understand was that having one autoimmune condition puts you at risk for other autoimmune conditions. The idea that I had multiple autoimmune conditions was difficult for me to understand.

I have 20 years of short term but frequent high dose prednisone use for inflammatory arthritis with uveitis. I have an additional 12 years of long term, moderately high dose prednisone use to treat PMR. With all that experience, I thought I knew everything there was to know about tapering off prednisone. When I was unable to taper off prednisone after PMR was diagnosed, I became interested in the subject of prednisone "dependence" and prednisone "withdrawal" symptoms. Both of these are related to adrenal insufficiency caused by prednisone use.

Your body needs cortisol which is a hormone essential to life. Cortisol is called the "stress hormone" but it is a hormone that regulates many things throughout the body. The following link explains it better than I can.
https://my.clevelandclinic.org/health/articles/22187-cortisol#:~:text=Cortisol%20is%20an%20essential%20hormone,Suppressing%20inflammation.
I only wish to mention all this because the body regulates the amount of cortisol it needs on a minute by minute basis. Too much and too little cortisol circulating causes a plethora of problems. When cortisol isn't regulated, inflammation isn't regulated along with many other things that aren't regulated. The body will attempt to adjust cortisol levels and compensate for too much or too little.

When we take prednisone, the adrenals stop producing cortisol. The way I think about things now is that the amount of cortisol we need on a daily basis is very complicated. Prednisone "overrides" how cortisol is regulated in the body and we assume manual control of something extremely complicated.

Unfortunately my body got dependent on me deciding what dose of prednisone I needed on a daily basis. I was forced to conclude that I had no idea how much prednisone that I needed. Now that I'm off prednisone, I let my body decide what it needs!

HI @flymetothemoon, I'm not sure your comment was meant for me. Starting with 40 mg, I tapered down 5 mg of prednisone every two weeks until I got down to 10 mg, then the taper slowed down. I was able to get off prednisone with no flareups a few months ago. I've been lucky. I read what others go through here and it isn't so easy for many. Best to you in 2023.

That’s great. That’s a fast taper so I’m happy it worked for you. I hope you continue to feel good.

As someone else who has multiple autoimmune disorders I would recommend the 2nd volumn of The LDH Book put out by The LDH Research Trust. You will find a wealth of information on autoimmune conditions. Oddly, they don't cover PMR. You seem to have a good understanding of our hard working adrenal gland.

I'm tapering from 15 to 7.5 mg daily. The bodily aches have greatky increased as I do so. This a.m., I started taking a Gabepentin and will do so at night also. I also took aspirin and the aches have subsided. I'm seeing a new rheumatologist but not until March so I'm lacking that support now. I also think I might have other autoimmune issues. I do have Atypical (Smoldering) Myeloma, not sure how that affects the PMR.

Do you mean you went from 15 mg down to 7.5 in one taper? That might be too much too fast? For both of my occurrences, once I got down to the 15 to 10 range, I used smaller tapers and kept a daily pain log. If my pain level was higher than 2, I increased the dose to half of what I previously tapered to see if I still had the pain the next day.

I know what LDH is but I don’t know exactly what book you are referring to.

I think most of my problems were cortisol related. A GI infection seemed to set everything into motion until one thing led to another and another.

I ended up in intensive care at one point thinking maybe more prednisone might be a good idea. The doctor’s were suspecting that prednisone was the problem!

Wow! I am curious as to what your symptoms were. (Only disclose if you are so disposed.) As to the book... The LDN research Trust has put two books out titled just that. II is the mort recent research and put out in 2020, so pretty recent. Although doesn't talk about its use in Long Covid. Too recent. Amazon has it.