1. < Polymyalgia Rheumatica (PMR)

PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | Jan 5, 2023
In reply to @suetex "Wow! I am curious as to what your symptoms were. (Only disclose if you are so..." + (show)
@suetex

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.

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Oh …LDN and not LDH. I don’t know too much about LDN. I have never discussed it with anyone. I know from reading things on forums that many people seem to say that it works.

I can describe what my symptoms were when I was diagnosed with PMR.

My rheumatologist now says that I have a full range of rheumatology problems.

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suetex | @suetex | Jan 5, 2023
In reply to @dadcue "Oh …LDN and not LDH. I don’t know too much about LDN. I have never discussed..." + (show)
@dadcue

Oh …LDN and not LDH. I don’t know too much about LDN. I have never discussed it with anyone. I know from reading things on forums that many people seem to say that it works.

I can describe what my symptoms were when I was diagnosed with PMR.

My rheumatologist now says that I have a full range of rheumatology problems.

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LDN stands for Low Dose Naltrexone and is an immune modifier with few side effects. When it does work for you, it can be life chaging. Read about it on the web first if you like. The LDN Research Trust is a good source. They are a non profit in Britain.

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connelly | @connelly | Jan 6, 2023
In reply to @richardab "I'm tapering from 15 to 7.5 mg daily. The bodily aches have greatky increased as I..." + (show)
@richardab

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.

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An increase in pain is a cause for concern. Your reduction from 15mg to 7,5mg does sound precipitate and may be much too sudden. In my own experience the pain of PMR has remained reasonably constant, over a ‘taper’ from 15mg daily a year ago to the current 3mg daily. Bearable pain but not disabling, once things get moving in the morning. No spectacular cure, no major relapses. Though you do have other problems, a return to a more effective level of Pred, with a slower reduction may be advisable.

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richardab | @richardab | Jan 6, 2023
In reply to @johnbishop "Do you mean you went from 15 mg down to 7.5 in one taper? That might..." + (show)
@johnbishop

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.

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Hi John, no, it's been a process of reduction, not just halving my dosage.

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analog | @analog | Jan 7, 2023
In reply to @dadcue "These are just my thoughts on the subject of prednisone withdrawal because 40 mg of prednisone..." + (show)
@dadcue

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!

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Thanks so much for your thoughtful and thorough response! You've been through quite the journey, and it seems like there just aren't clear answers that work for everyone; I'm really glad to read that you've found a way to get off the Pred and move forward listening to body wisdom.

This is the route I feel like I'm going to have to take, and hopefully glean some knowledge about side effects others have experienced to help guide me. For example, dropping from 40 to 35 and 35 to 30 after a month at each was fine. I got impatient and went to 25 after 14 days - within 5 days was feeling disoriented and disconnected. Took 30 for a day, symptoms cleared a bit, so I got greedy again and went back to 25. Today, 5 days later, dizzy and disconnected again. Lesson learned. Going back to 30 for at least another few weeks, then moving more slowly.

So while some people have been able to drop more quickly, I'm going to listen and try to accept the reality of MY situation. Probably extra important at this point because I just yesterday got an "abnormal" cologuard result, meaning I need a colonoscopy to see if I have cancer, or pre-cancer, or nothing. But the stress of that is no picnic, so I need to be extra gentle with my PMR stuff I suppose.

I would be interested to hear how you were able to finally get off Prednisone, and how long it took, and if you had any side effects outside of aches and pain....

Thanks again for sharing so much!

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mnmom1 | @mnmom1 | Jan 8, 2023

I have been treated for PMR since July. I am on 15mg of prednisone. Waiting for my labs (CRP) to come down so I can start to taper.

Question: how does activity affect those of you who have had PMR for a while. It seems if I am very active one day, the next day I am exhausted! Is that also your experience? My pain is pretty much controlled on the prednisone but I don’t like the prednisone side effects.

Thank you.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 8, 2023
In reply to @mnmom1 "I have been treated for PMR since July. I am on 15mg of prednisone. Waiting for..." + (show)
@mnmom1

I have been treated for PMR since July. I am on 15mg of prednisone. Waiting for my labs (CRP) to come down so I can start to taper.

Question: how does activity affect those of you who have had PMR for a while. It seems if I am very active one day, the next day I am exhausted! Is that also your experience? My pain is pretty much controlled on the prednisone but I don’t like the prednisone side effects.

Thank you.

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@mnmom1, When my PMR was active, if I overdid exercise or activity during the day, I generally was hurting some the next day and did feel a little fatigued. I don't think anyone likes the prednisone side effects 🙃 Weight gain was awful for me the first time with PMR. The second time not so much because I was more aware of it and changed my lifestyle some by eating healthier and exercising a little more.

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mnmom1 | @mnmom1 | Jan 8, 2023

I do exercise and that is helping me to keep my wt, BP and blood sugar down along with watching my carbs intake. This whole thing is the pits. I can’t believe you have been through this more than once. My biggest thing is I’m tired. I don’t sleep very well at night due to the prednisone, I think . Sleep 4 hours then I’m ready to go. Get up and read, then I get 3/4 more hours of sleep. I dislike being on prednisone…..

Thanks for the post.

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mary4 | @mary4 | Jan 13, 2023

After 2 plus years on prednisone, I have tapered to 1 mg for a month and then .5 for a.month. I started at 15 mg and tapered slowly. I am concerned about stopping cold turkey even though my taper has been slow. Does anyone know of another more gradual taper than cold turkey? Thanks so much. The information and collective wisdom from this group has made a huge difference in my journey.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 13, 2023
In reply to @mary4 "After 2 plus years on prednisone, I have tapered to 1 mg for a month and..." + (show)
@mary4

After 2 plus years on prednisone, I have tapered to 1 mg for a month and then .5 for a.month. I started at 15 mg and tapered slowly. I am concerned about stopping cold turkey even though my taper has been slow. Does anyone know of another more gradual taper than cold turkey? Thanks so much. The information and collective wisdom from this group has made a huge difference in my journey.

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Hi Mary @mary4, You are doing great! If you have been OK with .5 for a month, you have been tapering slowly and stopping prednisone at .5 is a good test to see if you are still OK with the little to no pain when you wake up the next morning. I did that for six months my first time around with PMR bouncing between 1 and .5 until I could finally stop taking prednisone with little to no pain. It had lasted about 3 and half years by the time I was off prednsione the first time.

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