Does adrenal insufficiency with unregulated inflammation cause flares?

@dadcue It hurts my head to even think about your question 🙃 Here are a few research articles that seem to be discussing a variation of your question.

--- Circadian variations in clinical symptoms and concentrations of inflammatory cytokines, melatonin, and cortisol in polymyalgia rheumatica before and during prednisolone treatment: a controlled, observational, clinical experimental study": https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-016-1072-4
--- Adrenal insufficiency in prednisolone-treated patients with polymyalgia rheumatica or giant cell arteritis-prevalence and clinical approach: https://pubmed.ncbi.nlm.nih.gov/32031663/
--- Risk of adrenal insufficiency in patients with polymyalgia rheumatica versus patients with rheumatoid arthritis: A cross-sectional study: https://pubmed.ncbi.nlm.nih.gov/35041750/

Thanks for the response. I'm interested in anyone's opinion to this question.

Two of the links seem to support the idea that adrenal insufficiency at least contributes to our need for long term prednisone. The second link says the following:

"Most of the glucocorticoid-insufficient patients could discontinue prednisolone with appropriate treatment for adrenal insufficiency."

I wonder what "appropriate treatment for adrenal insufficiency" they are referring to. The only treatment I know about is supplemental doses of corticosteroids like prednisone. Taking more prednisone won't let anyone discontinue corticosteroids any sooner. In some cases, supplemental corticosteroids are needed for the rest of their lives if their adrenals don't start producing cortisol in adequate amounts.

The third link says:
"Assessing the adrenal function in patients with PMR will contribute to establishing a more appropriate glucocorticoid reduction strategy."

My endocrinologist would not assess my adrenal function until I could stay on 3 mg for an extended period of time. Most people seem to experience flares at 7 mg of prednisone. I have read that 7 mg of prednisone is the physiological amount of cortisol that a person needs on a daily basis.

"In normal adults, the adrenal glands produce approximately 5 to 10 mg/m2/day (body surface area per day) of cortisol, which is equivalent to 5 to 7 mg of oral prednisone or 20 to 30 mg of hydrocortisone."

@dadcue - Have you seen these references?

--- Patient education: Adrenal insufficiency (Beyond the Basics): https://www.uptodate.com/contents/adrenal-insufficiency-beyond-the-basics
--- Primary Adrenal Insufficiency Guideline Resources: https://www.endocrine.org/clinical-practice-guidelines/primary-adrenal-insufficiency

@johnbishop - I know you had two bouts of PMR but you were able to taper off prednisone in a reasonable amount of time. It was still a few of years before you could taper off prednisone. Did you ever suspect that it was "something else" along with PMR that made it difficult to taper off? Did you ever suspect adrenal insufficiency was part of the problem?

I still remember a nurse telling me once that we are good at treating the original problem. Unfortunately, we tend to create new additional problems with the treatment of the first problem.

Hi @dadcue, I struggled my first time around with PMR and had a good discussion with my Mayo rheumatologist. He shared some stories of some other patients of his with similar struggles tapering off of prednisone one of whom rung a bell with me when he said he had been on 1mg prednisone for a few years until he was able to taper off. That was towards the end of my 3rd year with PMR the first time and when I started splitting my 1mg tablets and going back and forth between 1 mg and 1/2 mg until I was able to taper off 6 months later with little to no pain. My second time around 6 years later was easier because I had already found Connect for my neuropathy and I was able to learn from others who tapered slowly and modified their lifestyle to help with PMR.

I really didn't even think about other causes since it was always explained to me that PMR is basically like arthritis all over your body and growing up I can remember how much pain my mom was due to rheumatoid arthritis.

Hi dadcue. Your original question and subsequent comments are great! I have had the same question and have been unable to find sufficient answers.

I don’t know if you have this option where you reside, but here in Seattle we are able to order our own lab tests from the same lab used by my physician. So I am able to check on things like am cortisol that my physician might have trouble justifying to insurance companies/Medicare. I am at 6mg doing a slow 5 week taper down to 5. I haven’t tested my cortisol yet, but am about to.

Thanks for your reply @samara66

My a.m. cortisol level was tested and found to be low. There wasn't much that could be done as long as I needed prednisone for treatment. I was encouraged to taper down to the lowest dose of prednisone as possible. The best I could do was 7 mg when familiar aches and pains would recur. I would need to go back to at least 10 mg again every time.

I took prednisone for 12 years to treat PMR so an endocrinologist wasn't very optimistic that my adrenal function would improve. Adrenal insufficiency can cause muscle aches and pains and can mimic PMR symptoms. I wouldn't say the symptoms of adrenal insufficiency were exactly the same but enough to cause confusion.

I was able to taper off prednisone when a biologic that doesn't suppress adrenal function was tried. I tapered my prednisone dose down to 3 mg and stayed at that level for about 6 months. My a.m. cortisol level improved to the extent that it was "adequate." My endocrinologist said it might be safe to stop prednisone. She said going from 3 mg to zero would be okay. My endocrinologist provided the leeway such that I could take prednisone again for any reason if I felt the need.

I did a quick taper down to zero over a couple of days and I was suddenly off prednisone. I didn't feel well for several more months but I didn't have a PMR flare.

I can't explain what happened other than the biologic controls PMR inflammation but doesn't suppress my adrenal function. I still take a biologic to treat PMR but I have been off prednisone for more than 2 years.

I have been on the biologic for more than 3 years and PMR might finally be in remission. My rheumatologist says I'm better off on the biologic and is in no rush to stop the biologic anytime soon.

Would you mind sharing the name of the biologic you take, please?

Thanks for sharing your story about this very important aspect of PMR and prednisone. Adrenal insufficiency is a mysterious topic to me. Please let us know the biological you’re taking, how long you’ve been on it, the dosage and the form (is it an injection or an oral). Also, did you experience any significant side effects? Thanks and hope you have gone into remission.

Actemra