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Clinical VS Instincts
I went to a new Endocrinologist, and finally got some answers to my questions that was functional to my understanding where I stood with my PMR.
Q1) Even if I do methods, activities, and nutrition that stimulates Cordisol, why would my body begin making Cordisol if its all receiving Cordisol from Prednosine?
A1) It won't. The body normally requires slightly less than 5mg of Cordisol. The body will not stimulate more than it needs.
Q2) Can I test to see if I have a secondary adrenal deficiency, or some other similar condition that lets me know my body will never produce Cordisol.
A2) As long as I am taking Cordisol at 5mg or more, no test will provide an accurate indication. Once I get to 4.5 mg some testing can be done.
Q3) (here's where it got interesting)..... So all these Cordisol stimulus actions I'm taking, ... They are useless? No Cordisol is being produced by any of them?
A3) Clinically the Endocrinologist said he does not know that answer. There are no published clinical results for that. But instinctually he believes some Cordisol may be minimally produced.
And there may be a benefit to stimulating and maintaining those Cordisol production pathways.
In addition he offered a wise perspective...... Any lifestyle choices we choose that to any extent make the body healthier, more efficient, and stronger will assist in the quality of life and ability to recover.
My conversation with rhe Endocrinologist was much longer than the above questions. And wasn't what I would like to have heard.
But it gave me enough info to continue my own "therapeutic" direction, and answers to some questions that had been danced around by rheumatologists and physicians assistants for endocrinologists.
Im currently trying to better understand the HPA Axis as it applies to PMR.
Here is an AI search result for that:
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In the context of Polymyalgia Rheumatica (PMR), the HPA axis refers to the Hypothalamic-Pituitary-Adrenal axis, which is a complex set of direct influences and feedback interactions among the hypothalamus, the pituitary gland, and the adrenal glands. It plays a crucial role in the stress response and regulating various body processes, including digestion, the immune system, mood and emotions, sexuality, and energy storage and expenditure.
In PMR, the HPA axis can be affected by long-term treatment with glucocorticoids like prednisolone, which is commonly used to manage the symptoms of PMR. This treatment can lead to glucocorticoid-induced adrenal insufficiency, which is a condition where the adrenal glands do not produce enough steroid hormones1. This can cause reluctance to stop glucocorticoid treatment after disease remission, as symptoms of adrenal insufficiency can resemble a PMR/GCA flare.
The HPA axis function in PMR patients is an important consideration, especially when evaluating adrenal function and considering the tapering of glucocorticoid therapy. It’s essential to monitor patients for signs of adrenal insufficiency and manage it appropriately to avoid complications like adrenal crises.
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I'm happy you are digging into this topic. People have a tendency to hear what they want to hear and disregard the rest. I had an epiphany of sorts when I first heard this information. Maybe it was just a light that was switched on and I saw the problem with taking prednisone on a long term basis. I would probably make the same mistake again because pain has a way of dictating what I do.
My endocrinologist also confessed that she didn't know what would happen to me if I tapered off prednisone after taking it for more than 12 years for PMR. She said there would be no way to predict what would happen unless I made the attempt. Much of it was determined by whether or not PMR was controlled. I was fairly confident that PMR was under control thanks to a biologic treatment my rheumatologist wanted me to try. There was no way I would have been on 3 mg of prednisone if PMR wasn't controlled.
My endocrinologist tested my 8 a.m cortisol level when I somehow managed to maintain a 3 mg dose of prednisone for an extended period of time. My endocrinologist was impressed that I still had a cortisol level and said it was "encouraging." However, she wasn't sure if my cortisol level would be adequate or not. She said my cortisol level might be adequate for some days but maybe not adequate for all days. Whether or not my cortisol level was adequate for all days depended on the ability of my adrenals to produce more cortisol when needed. The amount of cortisol needed varies depending on stress levels, infections and other things. This seemed to explain the "good day" and "bad day" phenomena I was experiencing.
My endocrinologist said if I tapered off prednisone, I could go back on prednisone if I felt the need. That was the only reassuring thing she told me but it was enough to make me want to find out what would happen if I tapered off.
What eventually happened wasn't exactly a smooth landing but it wasn't a crash landing either. Next time, I plan to let my HPA axis decide how much cortisol I need. My HPA axis could regulate my inflammation and other things much better than I ever could with prednisone.
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5 ReactionsThank You!
What is the "biologic" you spoke of?
I am taking a "tonic" by a very reputable Chinese medicinal herb specialist, who does have a working knowledge of Prednisone reduction. But it is a help I believe but I'm still having difficulty at the 6 - 5.5 mg level.
I have now come to a different perspective on reducing/increasing Prednisone based on "how I'm doing".
I don't flare as badly from physical stress, as much these days from mental or emotional stress.... Which is interesting because I've considered myself historically a very calm person. I'm quite sure the PMR has me much more susceptible to that sort of stress.
So .... my goal in trying to reduce the Prednisone, is not to be as reactive after the fact to stress. As that dose goes up and down in response to streses, I'm not sure it trains my body towards that goal, .... as much as using other tools to deal with mental and emotional stress.
I'm happy to detail what that is, but I think that is so personal to different folk's experiences and beliefs, they are better off discovering it themselves, or going to a resource in the form of a person or document, they trust.
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2 ReactionsI was given a biologic medication called Actemra (tocilizumab). It blocked the IL-6 inflammation pathway implicated in both PMR and GCA. Actemra seemed to control my PMR symptoms.
The added bonus was --- Actemra didn't prevent my adrenals from producing more cortisol. Actemra doesn't stimulate adrenal function. However, Actemra didn't suppress my adrenal function like prednisone did.
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1 ReactionYour post is extremely helpful in understanding how the endocrine system works with Prednisone, i would like to share your post with PMR sufferers in Australia if thats ok with you
Absolutely.