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PMR Dosages and Managing Symptoms

Polymyalgia Rheumatica (PMR) | Last Active: Jul 27 8:00am | Replies (468)

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@analog

Hi everyone. I know there's a topic about tapering, but it has a lot of data in it about how to taper, when to taper, etc - and I'd like to focus on the people's experience with withdrawal symptoms so I can hopefully prepare myself to understand them if they appear... I also think it would be helpful for those, like myself, that just found out they can mimic a flareup.

Any general experiences with withdrawal would be extremely helpful I think, and if anyone would like to respond to my personal situation, I've detailed it below. Thanks to all - this is a fantastic resource!

My situation:

As I've mentioned, I'm fairly recently diagnosed (symptoms came on fast in September, diagnosis in late Oct) and began with 40mg of pred a day which kept me from becoming completely disabled (I was well on my way). After some back and forth during blood work etc, my rheumatologist confirmed the diagnosis and I went with 40mg/day, with a plan to taper by 5 mg/day every month.

I followed that for two months with no increase in pain, and just recently (5 days ago) tried accelerating just a bit, dropping from 30 to 25 after two weeks instead of waiting four. My reasoning was that I could tolerate a bit of pain in exchange for less pred side effects sooner.

Things were pretty O.K (a very small pain increase in the morning, but easily tolerable), but today I woke up pretty disoriented - I almost feel a bit drunk if I'm up and moving around. Very unpleasant and not easy to put my finger on.

BP is normal (it's controlled with meds though), and I'm not sure what's happening. Has anyone had withdrawal symptoms like that, and do they go away or should I bounce back up to 30 for a bit?

Thanks so much.

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Replies to "Hi everyone. I know there's a topic about tapering, but it has a lot of data..."

Hello @analog. You will notice I have moved your post into an existing discussion on PMR dosage. I did this so that you may connect with other members who may have also experienced withdrawal symptoms that you are interested in learning about from others. You can find your post here:
- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Members like @karinaph @tillysam @jfannarbor and @floridabonnie may be able to come in and offer you some support based on their experience.

How are you feeling now after several hours?

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!