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Adrenal Insufficiency and Tapering Prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Feb 9 10:49am | Replies (24)Comment receiving replies
Adrenal insufficiency is an often overlooked ramification of long term prednisone use. It may be a reason why people are unable to taper off prednisone. My symptoms of adrenal insufficiency started when I reached 7 mg of prednisone and worsened as I tapered lower. My main symptom was overwhelming fatigue. Myalgia is a symptom of adrenal insufficiency and PMR but it was impossible to distinguish one from the other cause of the myalgia. I was forced to take more prednisone and that is the treatment for both PMR flares and symptoms of adrenal insufficiency.
I took prednisone for 12 years so an endocrinologist "expected" that I would have secondary adrenal insufficiency due to long term prednisone use. Unfortunately, I needed to taper down to 3 mg of prednisone to be able to accurately test for adrenal insufficiency. If you take prednisone for more than a few weeks the natural production of cortisol by your adrenal glands will decrease ... that is a given.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
My cortisol level was tested only when I could sustain a 3 mg dose of prednisone. Sure enough ... my cortisol level was low. My test was an 8 a.m. cortisol level after holding my prednisone dose for 48 hours. I was able to taper down to 3 mg when a biologic was started and my PMR symptoms were well controlled. The biologic I took didn't cause adrenal suppression so I was able to maintain a low prednisone dose for the first time in 12 years.
After it was verified that I had a low cortisol level, the treatment was to wait and see if my adrenals would produce enough cortisol again. I stayed on 3 mg of prednisone for 6 months as my cortisol level gradually improved. Eventually, my endocrinologist gave me the green light to discontinue prednisone when my cortisol level was deemed to be "adequate." Some people aren't so fortunate because their adrenals may take years to recover or their adrenals have permanently shut down.
If the adrenals don't respond to lower doses of prednisone and are unable to produce cortisol again, the treatment is a maintenance prednisone dose of about 5 mg for the rest of a person's life. Hydrocortisone is the preferred treatment for adrenal insufficiency and usually given as a twice daily maintenance dose.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297573/.
"Chronic glucocorticoid therapy is the most common cause of adrenal insufficiency. The diagnosis of adrenal insufficiency is made by demonstrating low basal and/or stimulated serum cortisol and should be followed by appropriate investigations to establish the underlying aetiology. Maintenance glucocorticoid replacement is usually given as a twice or thrice daily hydrocortisone preparation."
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@dadcue, how did you taper from 7 mg down to 3 mg of prednisone?
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Hi @dadcue and everyone really- Thanks so much for the detailed replies and resources. Sorry to be MIA; it’s just been a really rough few weeks.
So my backstory is my father had a severe stroke about two weeks after being diagnosed with PMR which may or may not have been related to GCA. Things get really hard, as he now has significantly impaired physical and cognitive function, it’s nearly impossible to find qualified and affordable caregivers, he’s on a feeding tube, may have vascular dementia as a result of the stroke, and on and on and on.
And on top of all this we’ve been dealing with the PMR and prednisone taper. Luckily (if I can even put it that way), he’s not seronegative, so we can use labs to gauge his response but otherwise it’s very difficult to identify a flare and separate symptoms of PMR from the stroke, and from prednisone withdrawal. His doctors, except for his rheumatologist all seem clueless about PMR (his PCP completely missed the diagnosis) and oddly not very knowledgeable about prednisone side effects. They mostly chalk his symptoms up to the stroke, but it’s odd to me he’s been slowly losing what strength and energy he gained with PT/rehab ever since we got to 6 mg.
And I kind of thought that was the “worst” of it, only to find that PMR seems to be the gift that keeps on giving! It’s maddening.
Since January, he’s had more and more trouble tapering, hovering somewhere between 5-6.5 mg prednisone and experiencing more weakness, fatigue, have 1-2 day fevers, feeling unwell. Finally, his rheumatologist ordered a cortisol test, but it seems those aren’t always so reliable.
She said it’s “a little low” (how low is “a little”?? She’s very terse in her messages), which “may be due to adrenal insufficiency,” and that’s literally all her message to me said.
Thanks to this group, I knew to ask more questions. I responded and told her about our concerns and reiterated his symptoms, and her response was: “I submitted a referral to Endocrinology.”
So I guess we’ll do that for now. The soonest appointment is June, which isn’t as bad as I thought it would be.
It’s just really disheartening because with his physical and cognitive disabilities as they are and the information and resources that have been shared here… If he does have adrenal insufficiency, it would be extremely difficult to manage the testing, hold the prednisone, or even put him through the side effects of lowering the dose further. I don’t want to get too far ahead of myself, but I talked to my mom about it and we don’t know if the risks or impact on his quality of life would be worth forcing the taper if he is found or assumed to have adrenal insufficiency.
I say the symptoms of the prednisone withdrawal, PMR, or adrenal insufficiency for him are dangerous because he experiences severe weakness and fatigue. The more fatigued he is, the more difficult it is for him to manage his dysphagia. The weakness around his throat and neck makes it much harder for him to swallow, which puts him at risk of aspiration pneumonia, which he’s already had twice now, and for him can be deadly. Not to mention, when he can barely stand because he’s hemiplegic (severe weakness or paralysis on his left side) it takes a serious physical toll on all of us to manage his transfers to/from anywhere.
Sigh. I just feel really disheartened. It feels like a catch-22. Take the prednisone to manage the PMR, but the prednisone can cause all this.
I know; I’m ranting/venting now. And this is a super-long post.
But all of the information is helpful. I’m very grateful to all of you.