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Testing for Cortisol levels during taper of prednisone
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (28)Comment receiving replies
This is one of the best threads I’ve read on this site. Thank you all for the scientific notes as well as your experiences. So helpful. I’ve been on prednisone for two years for a lung disease (CEP) and having lots of hormonal and likely cortisol issues. I had a functional medicine person test cortisol this month - very high in the AM near non existent in the late afternoon. She said I’m fine for now which was confusing. I am currently on 3 mg, tapering by .5 each month to try to get to zero (my 8th taper bc I relapse every time and have to go back to 10 mg). Now I understand why I just need to slowly taper still and watch my symptoms. Such a relief to understand why now. Thank you all again!!
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@lluth412
"I had a functional medicine person test cortisol this month - very high in the AM near non existent in the late afternoon."
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That is "somewhat normal" for a cortisol level in the morning ---not completely normal in the afternoon.
When did you take your Prednisone dose? For a valid a.m. cortisol level test you can't take any Prednisone for at least 24 hours. Ideally, for a more accurate a.m. cortisol level when on a low dose of Prednisone --- you would need to hold your Prednisone dose for 48 hours.
It is debatable what the low dose of prednisone is. My endocrinologist said I needed to be able to maintain a 3 mg dose for an extended period of time before a morning cortisol level was warranted. I also needed to be "symptomatic" of adrenal insufficiency to warrant a cortisol level to be checked.
I must have been symptomatic enough to get my cortisol level checked and it was "quite low." However, my endocrinologist was somewhat surprised that I had a cortisol level so soon after being on moderately high doses of prednisone for 12 years. Since I had a cortisol level even though it was low ... my endocrinologist was "optimistic" that my adrenal function would continue to improve if I could stay on a lower dose of prednisone. She didn't want me to increase my dose any higher than 3 mg unless it was absolutely necessary.
The main point my endocrinologist was making was that my cortisol level wasn't ever going to improve unless I could stay on a very low dose of prednisone. I was reading that I shouldn't have any pain when treating PMR. My endocrinologist said I needed to expect "some pain" when trying to taper off prednisone. She said I shouldn't automatically increase my prednisone dose for "prednisone withdrawal pain" unless it was absolutely necessary. All the while, I needed to avoid things that could cause an adrenal crisis.
All of this is easier said than done!