1. < Polymyalgia Rheumatica (PMR)

Trying to determine long term prednisone versus other prescriptions

Posted by mikeshell @mikeshell, Jul 13, 2023

I have been diagnosed with PMR for 15 months and began my prednisone journey on 20mg daily. I am now currently taking 3mg daily had having extreme fatigue, aches, dizziness, etc. I was able to function better on 5mg daily, but with some similar symptoms. My Rheumatologist wants me to start taking Celebrex long term. My social life includes occasional weekend alcohol, which is not tolerated with Celebrex. I do not want to give that up. My Rheumatologist said that she is "O.K." with me continuing long term prednisone at 5mg daily if that is my decision. My Endocrinologist is telling me no way is that a good decision and that I need to "get off" of prednisone because of the many side effects. I have cardio vascular issues and diverticulitis and concerned about the possible effects of these type of anti-inflammatory drugs. I'm having a hard time deciding what to do ( I lean toward long term prednisone at 5mg daily) versus taking Methotrexate and/or Celebrex or Meloxicam. I was functioning ok while on 5mg of prednisone. I know of other people that have been taking prednisone for long term therapy and seem to be doing fine. Is the risk so great at this dosage that I need to focus on stopping the drug and begin taking other medications that have side effects and limit my social life (the little that I have with this disease?) I also have had neck fusions and prior to my PMR diagnosis I was receiving regular steroid injections to manage the pain. Since I've been taking prednisone for my PMR , I have not needed those injections anymore. Any wisdom and advice is greatly appreciated. I just don't what is the best decision for me. Thank you all very much!

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nenie | @nenie | Aug 1, 2023
In reply to @emo "Short answer: Yes, unfortunately. My dad has PMR, and at the moment I don’t believe he..." + (show)
@emo

Short answer: Yes, unfortunately.

My dad has PMR, and at the moment I don’t believe he has fibromyalgia.

Longer answer and context: But I have seronegative spondyloarthropathy (a different autoimmune inflammatory arthritis), POTS, hyper mobility spectrum disorder, small fiber neuropathy, and central sensitivity syndrome.

The last diagnosis to come was fibromyalgia.

I can’t remember if I mentioned it already in this thread or if it was another one, but the physician who diagnosed me (at Mayo) explained it’s thought to be common with these chronic pain conditions because the long, enduring pain, with the potentially long time it takes to diagnose, treat, and relieve can trigger changes in the way the central nervous system processes pain—resulting in fibromyalgia.

Do you think you have fibro too?

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I have been diagnosed with both conditions.

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mikeshell | @mikeshell | Aug 2, 2023
In reply to @nyxygirl "@mikeshell HI Mike ! i am curious about your comment from 5mg to 3 mg --..." + (show)
@nyxygirl

@mikeshell HI Mike ! i am curious about your comment from 5mg to 3 mg -- how quickly did you taper down ? were you ever at 4 mg ? ( i am now at 10mg /day for next month ,before going to 9 mg) sigh ! Are your "aches" distinguishable from the classic morning stiffness /pain of PMR ? lately pain in my right leg is annoying - but i have NO "PMR" pain stiffness.

do you recognize yourself in one of these cohorts of patients in UK that report pain for range of two years
[Rheumatology (Oxford)
. 2020 Aug 1;59(8):1906-1915. doi: 10.1093/rheumatology/kez533.
Longitudinal clusters of pain and stiffness in polymyalgia rheumatica: 2-year results from the PMR Cohort Study Sara Muller first author ]
Five clusters were identified. One cluster represented the profile of 'classical' PMR symptoms - "rapid and sustained "and one represented sustained symptoms that may not be PMR. The other three clusters displayed a partial recovery, a recovery followed by worsening and a slow, but sustained recovery. Those displaying classical PMR symptoms were in better overall health at diagnosis than the other groups.

have you ever seen the videos in this site ? PMARand IL6.com - go to resources tab and scroll down to listen to john stone and contraindications of prednisone . Why would an NSAID be considered , in place of GC ?
i assume you are familiar with the role of IL6 in PMR? have you asked specifically if you are now a candidate for Kevzara ?
knowing what others are going through sure helps !

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Thank you so very much for this information. Knowledge is the key ingredient to making smart choices and decisions. My reduction from 5mg to 3mg has been relatively slow. I took 5mg each day for one month, then alternated between 5mg one day, 4mg the other day for one month. Then, 4mg each day for an entire month, then back to the same routine of alternating 4mg/3mg respectively. I have stayed on 3mg for the past 3 months and now having more issues with soreness, stiffness in shoulders and hips, bouts of fatigue and lightheadedness. I am considering increasing back to 5mg as I felt like I could tolerate my PMR at that level.

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nyxygirl | @nyxygirl | Aug 3, 2023
In reply to @mikeshell "Thank you so very much for this information. Knowledge is the key ingredient to making smart..." + (show)
@mikeshell

Thank you so very much for this information. Knowledge is the key ingredient to making smart choices and decisions. My reduction from 5mg to 3mg has been relatively slow. I took 5mg each day for one month, then alternated between 5mg one day, 4mg the other day for one month. Then, 4mg each day for an entire month, then back to the same routine of alternating 4mg/3mg respectively. I have stayed on 3mg for the past 3 months and now having more issues with soreness, stiffness in shoulders and hips, bouts of fatigue and lightheadedness. I am considering increasing back to 5mg as I felt like I could tolerate my PMR at that level.

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@mikeshell Hmmm -- that is interesting tapering protocol - again i am curious - did your rheumatologist and you come up with this ? I have had some luck contacting some of the first authors of these papers -- i will send an email to ask if there has been more data from the study i posted above - these patients' Prednisone dose after 24 months was *only* {my emphasis] 4.8 mg (s.d. 3.4). I personally am always wondering now what exactly would trigger a flare up of the pain/stiffness -_ Have you seen this or other figures such as this ,before . I really liked this review article that had this figure. On another personal note - my cousin had PMR about 10 years ago -- he only had trouble trying to go below about 2mg and at that point he reduced by. 0.5mg !! he was astonished that was what made all the difference for him ! All these years later - no relapses ! so stay positive MIKE !!!

Shared files

update on PMR 2022 JOIM-292-717 (update-on-PMR-2022-JOIM-292-717.pdf)

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