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Post Prednisone Adrenal Insufficiency

Polymyalgia Rheumatica (PMR) | Last Active: 16 hours ago | Replies (22)

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Profile picture for pattiobrien111 @pattiobrien111

Hello,
The systemic, chronic immune activation of PMR can sometimes trigger central sensitization, leading to secondary fatigue syndromes. The chronic aching and pain mimics ME symptoms in myself. There are varying degrees of ME depending on the person, but most certain PMR is a trigger as everything is an immune issue or response where illness is concerned.
Your adrenal glands may still be struggling to function at 100% capacity, or you may be experiencing a prolonged Steroid Withdrawal Syndrome. While the hypothalamic-pituitary-adrenal (HPA) axis often recovers within 6 to 12 months after stopping long-term prednisone, an 18-month course (for myself) was of substantial duration. In some individuals, full hormonal and cellular recovery can take significantly longer than a year, leaving a lingering vulnerability in how the body handles physical stress and inflammation.
This is very frustrating because the goal is to get off steroids all together. I never felt so poorly as when I stopped the prednisone and fought with myself not to go back on them given the dire side effects. It’s a great drug don’t misunderstand me. And it will boil down to quality of life here. That said, I am a month into taking Low Dose Naltrexone and am up to the max of 4.5mg daily. It’s working! While it’s still “off label” and can be expensive, there are different formulations that might be less expensive. I have the liquid so it’s a bit pricy. I also live in Ireland so drug prescriptions are not so dear here as in the USA.
Chat with your doctor and see if you can trial the LDN. I wish you good health and wellness.

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Replies to "Hello, The systemic, chronic immune activation of PMR can sometimes trigger central sensitization, leading to secondary..."

@pattiobrien111 . Thanks for the words on central sensitization. Strange that you went right for that ...."central sensitization" (ie nociplastic pain). When I wrote my entry on May 4th, I had never heard of that in relation to PMR and post PMR issues. In the last weeks, however, I have been deep in the weeds on that very subject. It is an issue, I now realize, I have had my entire life. My body and has been full of aches and pains that are nonsensical. Recently I have been approaching much of my body pain with a somatic inventory and what I am now calling my daily challenge to that pain (ie acknowledgement and moving on; not feeding it with worry). The CNS's overstimulation and my psychological hyper vigilance I am now addressing in a more educated way, given that the ideas of nociplastic pain have been better defined. Back in May I had lots of whole body pain and not really much if any deep fatigue. I was tired but not an ME fatigue . My whole body pain morphed over the months into a low back pain issue. That area, too, is suspected to be commonly associated with a nociplastic pain response. I have a newer chiropractor and have been doing strengthening exercises for the hip, back, and abdomen which is good to do whether it is nociceptive or nociplastic pain. In other words, I am getting back into better shape to meet the challenges that I am asking of my body (more intense labor and more intense recreation). I have investigated LDN but want to stay off meds of any kind if I can right now. I am not even taking tylenol arthritis anymore. It was only helping slightly, anyway. I am putting more energy into the strengthening and mind-work of nocplastic pain. I appreciate your words and experiences that you have shared.