Testing for Cortisol levels during taper of prednisone

Posted by lagpmr2024 @lagpmr2024, Jun 3, 2025

Has anyone's Rheumatologist done this blood test say half way through a taper? If so, what were you're results?

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Mike | @dadcue | Jan 7 10:33am

In reply to @vjm0223 "I asked this question at my last appointment. Rheumatologist said he wouldn’t order the test until..." + (show)

@vjm0223

That is a common position for a rheumatologist to take. They worry about the rheumatology problem more than the endocrine problem with adrenal insufficiency.

Another problem is there isn't that much that can be done for prednisone induced adrenal insufficiency. The treatment is the same because you have to continue taking prednisone or some other corticosteroid. You must also continue doing a slow taper and hope that someday you can taper off prednisone.

I will say it was a whole lot easier for me to taper off Prednisone after Actemra was started. It still wasn't that easy because I was on Prednisone for 12 years.

Actemra controlled my inflammation while I tapered off prednisone and didn't suppress my adrenal function. I have to assume my IL-6 level was too high but that was never tested either.

Until the mentality that Prednisone is the "only option" for PMR/GCA, I guess we have to accept adrenal insufficiency as a potential problem. Adrenal suppression is temporary in many cases but can be permanent for some.

lluth412 | @lluth412 | Jan 7 5:26pm

In reply to @dadcue "@lluth412 "I had a functional medicine person test cortisol this month - very high in the..." + (show)

@dadcue

@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!

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@dadcue I wasn’t told anything about timing for the cortisol test. I did some research the day before and realized I should do an AM one so I could compare to the afternoon one. I fasted and didn’t do my prednisone dose or my inhaler before the test. But based on all the info above, neither test really told me much. I do have fatigue and it now looks like Hashimotos thyroid so we were trying to find all the things prednisone has done in my body so I can try to minimize the impact. Not easy!

And coming down on prednisone after so long is hard so trying to tease out “is this adrenal issues or withdrawal or asthma flare or am I just having a bad day?” is also not easy!!

Mike | @dadcue | Jan 7 6:14pm

In reply to @lluth412 "@dadcue I wasn’t told anything about timing for the cortisol test. I did some research the..." + (show)

@lluth412

Timing is crucial ... I think between 8 and 10 a.m. for a morning cortisol level. There are many other factors to consider for an accurate interpretation. I'm not sure that fasting is that important but perhaps. The following link is about cortisol levels for people who aren't on Prednisone.
https://www.webmd.com/a-to-z-guides/cortisol-test
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Cortisol levels for people on prednisone and trying to taper off is totally different. If the test isn't done correctly the results are meaningless. I think that is another reason why cortisol levels aren't done very often. Doctors that aren't endocrinologists have no clue how the test is done or how to interpret the results.

The following is some guidance that was recently published jointly by European and American endocrinologists. Even this seems vague to me.
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency.
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You can click on various sections under recommendations for more details.
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Otherwise the prednisone pharmacist has a video.

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I can appreciate you having additional problems with your thyroid, asthma and other things. Those things make it even more complicated. My problem was only because I was on Prednisone for a long time.

An a.m. cortisol level is just a screening test. If needed, an endocrinologist can do a Synacthen test and other extensive testing which gets even more complicated.

caroljeand | @caroljeand | Jan 8 10:26am

In reply to @dadcue "@lluth412 "I had a functional medicine person test cortisol this month - very high in the..." + (show)

@dadcue

All of this is easier said than done!

Jump to this post

@dadcue
My endocrinologist said the life of prednisone is 18 hours so my fasting morning blood test should have been a true reading of my own cortisol level. Hope he was right. Was on 4 mg at the time of testing.

Mike | @dadcue | Jan 8 12:34pm

In reply to @caroljeand "@dadcue My endocrinologist said the life of prednisone is 18 hours so my fasting morning blood..." + (show)

@caroljeand

It is probably okay for 18 hours but longer is better.

Specific Steroid Holding Times
Hydrocortisone: Hold for at least 24 hours before testing
Prednisone/prednisolone: Hold for at least 48-72 hours
Dexamethasone: Hold for at least 48-72 hours (preferred if testing must be done while on steroids as it has minimal cross-reactivity with cortisol assays)
https://www.droracle.ai/articles/267087/should-a-patient-take-oral-steroids-before-an-acth
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There might be other sources that say something different. Health care professionals are notorious for never agreeing on anything.

This is another reason why cortisol levels aren't done routinely. It might be difficult for PMR/GCA patients to hold their dose that long. I was able to hold my dose for 48 hours because Actemra prevented a PMR flare

caroljeand | @caroljeand | Jan 8 1:15pm

In reply to @dadcue "@caroljeand It is probably okay for 18 hours but longer is better. Specific Steroid Holding Times..." + (show)

@dadcue
I’m guessing I would have held off prednisone for 20 to 22 hours between my last dose and the blood test. So it probably told him what he needed to know. He determined my cortisol level was normal and felt I was producing cortisol. I tapered to 3 mg yesterday and feel ok so far. Maybe having had 4 kevzara injections has also helped.

Mike | @dadcue | Jan 8 1:47pm

In reply to @caroljeand "@dadcue I’m guessing I would have held off prednisone for 20 to 22 hours between my..." + (show)

@caroljeand

I would have never been able to taper off prednisone without Actemra.

I was on another forum and the experts said Actemra does nothing to the adrenals to promote recovery. I thought that was comical because one advantage of Actemra and Kevzara is that these biologics do nothing to the adrenals. They don't suppress adrenal function in the way Prednisone does.

You still need to taper off prednisone slowly because it takes time for adrenal recovery to happen. It doesn't happen like a light switch where the adrenals are either on or off. The adrenals don't suddenly "kick in" like some people say.

If you are lucky --Kevzara should make it easier to taper off Prednisone. It is about a 50/50 chance that you get completely off Prednisone. I think this is mostly due to how suppressed a person's adrenals get. My endocrinologist said I had resilient adrenals after I got off prednisone.

Good Luck with Kevzara!

caroljeand | @caroljeand | Jan 8 2:30pm

In reply to @dadcue "@caroljeand I would have never been able to taper off prednisone without Actemra. I was on..." + (show)

@dadcue
Thank you… I am hopeful to be off prednisone in February and hopeful that I will succeed due to my being on the poison pill for less than 6 months by that time.
Doctor felt like my adrenals kicked in so we’ll see.

irene6754 | @irene6754 | Mar 6 4:59pm

In reply to @dadcue "The recommendation from the Endocrine Society in the USA in collaboration with the European Society of..." + (show)

@dadcue

The recommendation from the Endocrine Society in the USA in collaboration with the European Society of Endocrinology says the following:

R 2.4 We recommend against routine testing for adrenal insufficiency in patients on supraphysiologic doses of glucocorticoids, or if they are still in need of glucocorticoid treatment for the underlying disease.
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency
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I had a routine a.m. cortisol level done when I was on 3 mg of Prednisone. I didn't need Prednisone anymore for PMR because Actemra was controlling my PMR symptoms. I had symptoms consistent with adrenal insufficiency. I did not have a Synacthen Test which I think is the "dynamic test" they are referring to in the following recommendations.

R 2.7 If confirmation of recovery of the HPA axis is desired, we recommend morning serum cortisol as the first test. The value of morning serum cortisol should be considered as a continuum, with higher values more indicative of HPA axis recovery. (⊕○○○)

R 2.8 We suggest against routinely performing a dynamic test for diagnosing adrenal insufficiency in patients tapering or stopping glucocorticoid therapy. (⊕○○○)
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My first morning cortisol level was "low" and the following guideline was followed:

"We suggest that if the result is < 150 nmol/L or 5 μg/dL, the physiologic glucocorticoid dose should be continued, and the morning cortisol repeated after a few months."
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I was told to stay on 3 mg of prednisone and referred to an endocrinologist. It was the second time I was referred to an endocrinologist. The first time was when I was still taking 10 mg of Prednisone. The endocrinologist said a cortisol level wasn't warranted because 10 mg of Prednisone was too much for a reliable cortisol test. I was told that I needed to be on 3 mg of Prednisone or less. The endocrinologist referred me back to my rheumatologist the first time to see what could be done to lower my Prednisone dose.

My second evaluation by an endocrinologist was an hour long. My symptoms were reviewed. My endocrinologist wasn't surprised by my low cortisol level because I took Prednisone for 12 years to treat PMR.

According to the "essential points" in the above link:

"Suppression of the hypothalamic-pituitary-adrenal (HPA) axis is an inevitable effect of chronic exogenous glucocorticoid therapy, and recovery of adrenal function varies greatly amongst individuals."

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@dadcue

Good afternoon, Mike. I have been on Prednisone for 7 years. I finally made it to 3.5mg on my own as my endocrinologist said I need to be on it forever. May I ask what happened after your second visit to the endocrinologist? Are you off Prednisone?

Irene

Mike | @dadcue | Mar 6 6:59pm

In reply to @irene6754 "@dadcue Good afternoon, Mike. I have been on Prednisone for 7 years. I finally made it..." + (show)

@irene6754

It is a very long story!

Yes ... I eventually managed to get off Prednisone. My second visit with an endocrinologist was amazing. We had a long discussion about my cortisol level and what "might happen" if I stopped prednisone. I was on 3 mg of prednisone for about 6 months after being told not to taper any lower than 3 mg.

Actemra allowed me to taper down to 3 mg. During 12 years on prednisone without Actemra -- I was lucky to get under 10 mg. Actemra didn't suppress my adrenal function. My endocrinologist thought 3 mg of prednisone was a low enough dose to allow some recovery of my adrenal function but she wasn't overly optimistic.

I had a morning cortisol level drawn when I initially reached 3 mg. That was when my cortisol level was too low so I was told to stay on 3 mg. After 6 months, a second morning cortisol level and ACTH level was drawn. The results of those labs were "encouraging" according to the endocrinologist.

After 12 years on Prednisone at doses greater than 10 mg, my endocrinologist was surprised that I had a "measurable" cortisol level let alone a level that was "adequate." Having any "measurable" cortisol level after such a long time on prednisone suggested that my adrenal glands did not completely shut down, which is a positive finding.

My endocrinologist said it "might be safe" to discontinue prednisone if I was willing. It wasn't exactly like I was told to discontinue prednisone because it depended on how I felt. I had symptoms of adrenal insufficiency which for me was mostly "overwhelming fatigue." I also had some body aches and pains but nothing that seemed like PMR. I was "reasonably certain" that Actemra controlled PMR at the time.

My first attempt to discontinue Prednisone was a "leap of faith" because my endocrinologist would not predict what would happen. She only said I could restart prednisone for "any reason if I felt the need." I didn't have an adrenal crisis but within 2 weeks of stopping Prednisone the first time --- I needed 60 mg of prednisone again.

Things really got interesting and complicated after I went back on 60 mg of Prednisone. Adjustments were made and other treatments were tried. About 6 months later, I was cleared for a second attempt to discontinue prednisone. It was a collaborative effort by my rheumatologist, my ophthalmologist and my endocrinologist that made my second attempt to discontinue prednisone successful.

I have ongoing follow-up visits with an endocrinologist but my cortisol level is not a problem anymore. I have been off prednisone for more than 5 years. I now do monthly Actemra infusions but initially I was doing Actemra injections.