PMR. Endocrine or Rheumatology Issue?

Hello @bettebaldwin, Welcome to Connect. I've had PMR twice but it's now in remission going on 7 years now. @dadcue started several discussions that have research articles listed in the discussion description that might shed some light on your questions.

-- Is progress being made in understanding PMR/GCA?
https://connect.mayoclinic.org/discussion/is-progress-being-made-in-understanding-pmrgca/
-- Question about PMR in addition to other autoimmune disorders?
https://connect.mayoclinic.org/discussion/pmr-in-addition-to-another-autoimmune-disorder/
-- History of PMR -- Interesting video presentation from past to present.
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/

Thanks for this prompt response @johnbishop A good bit of bedtime reading for me here! Papers which certainly look in my interest area. I'll have a look @dadcue too.

Glad to hear you're in remission. I'm relatively recently diagnosed and keen to really understand this endocrine underpinning.

Thanks again. Bette

@bettebaldwin

The site where excessive amounts of inflammation occurs makes PMR a rheumatology issue. Then the PMR rheumatic issue becomes more of an endocrine issue after we take prednisone for PMR.

The PMR endocrine issue more or less "perpetuates" the PMR rheumatology issue because, when we take prednisone, we "shut down" the endocrine system that regulates inflammation which is the HPA axis. The endocrine issue is why we have to taper off Prednisone slowly. The side effects from prednisone are almost entirely an endocrine issue.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
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The interplay of rheumatology and endocrinology is what makes PMR and the treatment for PMR so complicated.

Thanks @dadcue and @johnbishop
Some of the reading has taken me to the issue of using Immediate Release Prednisone or Modified Release Prednisone and the impact on cortisol and in turn sleep/sleep rhythms.
Some of this research is 2025 so doubt it has reached into, in the UK anyways, the treatment protocols allowed by NICE. Plan to raise it with my GP who is managing my PMR - particularly in light of sleep (or lack of it) being a real major issue for me.
Thanks again for your 'steers'.

Sleep/sleep rhythm disruptions are because of prednisone's effect on the HPA axis.
https://www.ncbi.nlm.nih.gov/books/NBK279071/
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The insomnia gave way to overwhelming fatigue the longer I stayed on prednisone. Eventually prednisone took all of my energy away. We need restorative sleep and that is difficult with PMR and prednisone.
https://www.medicalnewstoday.com/articles/does-prednisone-cause-insomnia
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Every body function is "regulated" by hormones. Hormones act as the body's master chemical messengers. Hormones work in tandem with the nervous system to control nearly every biological process. Taking synthetic corticosteroids simply causes the HPA axis to be out of whack.

The "reset" of our dysregulated HPA axis can only happen after we taper off prednisone. This should allow the adrenal glands to resume natural cortisol production. At least that happened to me in spite of being on prednisone for 12 years to treat PMR.

I waited for PMR to "burn itself out" but sometimes people have to wait for a long time. When a biologic which didn't suppress my adrenal function was used to control PMR, it still took me more than a year to taper off prednisone and my cortisol level recovered.

Sorry ... the formulation of prednisone and when we take prednisone have limited benefits to the HPA axis in my opinion. The modified release (MR) version of Prednisone is very expensive in the USA for some reason.

Biologics are also very expensive in the USA. However, if a biologic is FDA approved for PMR then insurance companies need to provide coverage for the biologic. However, insurance companies aren't forced to pay for the entire cost of biologics. Our health care system is complicated. While insurers are generally required by law to cover FDA-approved medications, Insurance companies heavily dictate the out-of-pocket costs to patients and frequently use "step therapy", prior authorization, or "specialty tiers" to limit their financial exposure. I suspect NICE wants to limit the financial exposure to biologics too.

The following link speaks to the topic of corticosteroid formulations in great detail.
https://www.jrheum.org/content/37/10/2025

You did not mention where you started on your PMR Dx and prednisone dosage or where you are now plus the extent to which your symptoms are being managed with your current dosage. This helps frame where you are on the PMR spectrum. If you never had to take more than 30mg of prednisone to manage the pain you then your case would be milder than someone who needed more. Also, have you tried to taper down any yet? This process needs to be slow and should be based on your inflammatory test numbers plus how much pain you are having. The goal should be to stay at a prednisone level that keeps you pain free before tapering down any, then if your inflammatory numbers are good, taper a little.
I had a conversation with my Endo recently and she said that checking my cortisol level while on prednisone has no value due to the prednisone masking and/or depressing your adrenal glands efforts. I have been at 10mg prednisone for 6+ months before I was able to come down any. I am now at 8mg and suspect I will be here for a number of months as well.

I not only have PMR, I also have GCA, so my dependance on prednisone will most likely be a lifelong need. I tried a biologic to taper off prednisone, it was working well until I had an adverse reaction at 10 weeks, so stopped that. Not sure what is next. Just know there is no single right answer. PMR is complex and not well understood. since there is no definitive test to confirm the Dx they do not really know if everyone who is Dx with PMR really has just one problem or multiple problems.

I wish you success on your journey. You will find this chat room very helpful and supportive. Please stay connected.

@jabrown0407 Thanks for this useful response.
I’m 6 weeks post-dx and on 15mg Prednisone per day. Pain is managed but not controlled. UK treatment pathway (NICE) is 15mg for 3 months or until symptoms controlled then slow taper up to 2 years in length. I’m doing the usual self-help support - nutrition, exercise, lifestyle, sleep plus some supplements.
I think sleep is my main issue. Also think PMR was triggered by a dental infection episode. But who knows?
Thanks for sharing your Endocrinologist's explanation about the cortisol/prednisone/adrenal gland/PMR issue. Very useful.

Thanks again.
And good luck to you too. Having GCA must be a real added challenge.

@bettebaldwin Very interesting approach, very different than the protocol in the US. I hope you are able to begin tapering at the end of the 3 months since I know in my case that prednisone interferes with my sleep in major ways at anything above 10mg.
Sending you a private msg.

I was diagnosed with PMR in March and put on 25mg prednisone, which eliminated the hip girdle pain and tempered the shoulder and neck pain. I tapered down to 22.5mg in April, then I was diagnosed with SMM in May. I'm on a fast taper now and down to 12.5mg. I just started taking 3mg LDN for some relief of the anticipated return of PMR pain. The three nights I have taken it have been some of the best sleep I've had in months.

@kjoed53 what is LDN?