You will probably get my feedback but my understanding the test is useless unless your down to say 2mg of prednisone. I think they will test at less than 5mg but its not reliable. They have you wait 24hr on your prednisone dose then test early morning. The problem is prednisone is supplying the cortisol causing issues with the test.
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
-----------------------------------
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. (⊕○○○)
------------------------------
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."
--------------------------
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."
You will probably get my feedback but my understanding the test is useless unless your down to say 2mg of prednisone. I think they will test at less than 5mg but its not reliable. They have you wait 24hr on your prednisone dose then test early morning. The problem is prednisone is supplying the cortisol causing issues with the test.
Thanks! After some additional reading, it looks like waiting until I'm at 2 or 1 or even finished (fingers and toes crossed I CAN finish without a relapse) is the best course of action.
My new rheumatologist last month said no to a cortisol test. I was at 4mg prednisolone dose at the time. He said testing isn't done unless there is symptomatic evidence of adrenal insufficiency and I was either off prednisolone or very close to it.
Thanks! After some additional reading, it looks like waiting until I'm at 2 or 1 or even finished (fingers and toes crossed I CAN finish without a relapse) is the best course of action.
As others have said its really an unreliable test. As Dadcue/megz stated testing will tell you what you already know that your body is not producing cortisol. Thus you have the typical tapering symptoms. Length of time of steroids is key to how long it might take your body to restart. Go slow and try to hold course. If you can get to 1mg then mostly likely your body is restarting. It may take months or even a year or longer for you to feel somewhat normal. Most of us that have stopped steroid use feel like it has left you with an adrenal fatigue. Its going to take some time.
"It may take months or even a year or longer for you to feel somewhat normal."
-------------------------------
I think this is correct. I'm still seeing an endocrinologist 4 years after I discontinued Prednisone. Contrary to popular belief ... the side effects don't go away as soon as you discontinue Prednisone. My "metabolic disturbances" and "hormone imbalances" are being monitored . My endocrinologist says some side effects from Prednisone might be permanent.
Based on the number of other medications that have been discontinued in addition to Prednisone ... things have improved. Most of my other medications were treating Prednisone side effects. My blood pressure normalized and 3 blood pressure medications were stopped along with several other medications. My primary care doctor loves to deprescribe medications although I had to talk her into stopping some of them. https://www.aafp.org/pubs/fpm/issues/2018/0500/p28.html
--------------------
I was recently diagnosed with gout and allopurinol was started to decrease my uric acid level. My rheumatologist was surprised that I never had a gout flare. Then he said I probably never had gout flare because of Prednisone. https://creakyjoints.org/about-arthritis/gout/gout-treatment/gout-allopurinol-inconsistent-higher-steroid-use/
Some problems that I never knew I had are being discovered.
This is timely for me. I had tapered to 1.5 mg and feeling poorly. I have been on prednisone since 2022 and wanted to get to zero this year. I decided to get an 8am cortisol test on my own instead of going through my big HMO. I did not have prednisone for 24 hours.
The test value came back at < 0.1 which means I was producing zero cortisol! I did take the results to the rheumy and she said go back to 5mg and get your PCP to refer to an endo. My PCP wrote the endo group who said they do not look at adrenal insufficiency until I have been off prednisone for a month. SO! I am back to managing this myself. I am at 3mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery.
As others have said its really an unreliable test. As Dadcue/megz stated testing will tell you what you already know that your body is not producing cortisol. Thus you have the typical tapering symptoms. Length of time of steroids is key to how long it might take your body to restart. Go slow and try to hold course. If you can get to 1mg then mostly likely your body is restarting. It may take months or even a year or longer for you to feel somewhat normal. Most of us that have stopped steroid use feel like it has left you with an adrenal fatigue. Its going to take some time.
This is timely for me. I had tapered to 1.5 mg and feeling poorly. I have been on prednisone since 2022 and wanted to get to zero this year. I decided to get an 8am cortisol test on my own instead of going through my big HMO. I did not have prednisone for 24 hours.
The test value came back at < 0.1 which means I was producing zero cortisol! I did take the results to the rheumy and she said go back to 5mg and get your PCP to refer to an endo. My PCP wrote the endo group who said they do not look at adrenal insufficiency until I have been off prednisone for a month. SO! I am back to managing this myself. I am at 3mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery.
"I am at 3 mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery."
--------------------------
Just so you know ... I stayed on 3 mg of Prednisone for 6 months waiting for my cortisol level to improve. After 6 months my endocrinolgist said my cortisol level was "adequate" on the day it was tested. She wouldn't guarantee my cortisol level would stay adequate after I stopped taking Prednisone because the amount of cortisol I needed would vary from day to day.
The surprising thing to me was that 3 mg of Prednisone was considered to be a very low dose and there was no need to taper from 3 mg to zero. Apparently I could just discontinue Prednisone since my cortisol level was adequate as long as I didn't need Prednisone to control my symptoms of PMR.
My endocrinologist said I would begin to feel better after I stopped Prednisone. She gave me permission to restart Prednisone for "any reason if I felt the need." Her only request was that I call her first before restarting Prednisone. She said the best way for my cortisol level to continue to improve was to stay off Prednisone.
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You will probably get my feedback but my understanding the test is useless unless your down to say 2mg of prednisone. I think they will test at less than 5mg but its not reliable. They have you wait 24hr on your prednisone dose then test early morning. The problem is prednisone is supplying the cortisol causing issues with the test.
-
Like -
Helpful -
Hug
5 ReactionsThe 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
-----------------------------------
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. (⊕○○○)
------------------------------
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."
--------------------------
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."
-
Like -
Helpful -
Hug
1 ReactionThanks! After some additional reading, it looks like waiting until I'm at 2 or 1 or even finished (fingers and toes crossed I CAN finish without a relapse) is the best course of action.
My new rheumatologist last month said no to a cortisol test. I was at 4mg prednisolone dose at the time. He said testing isn't done unless there is symptomatic evidence of adrenal insufficiency and I was either off prednisolone or very close to it.
-
Like -
Helpful -
Hug
2 ReactionsAs others have said its really an unreliable test. As Dadcue/megz stated testing will tell you what you already know that your body is not producing cortisol. Thus you have the typical tapering symptoms. Length of time of steroids is key to how long it might take your body to restart. Go slow and try to hold course. If you can get to 1mg then mostly likely your body is restarting. It may take months or even a year or longer for you to feel somewhat normal. Most of us that have stopped steroid use feel like it has left you with an adrenal fatigue. Its going to take some time.
-
Like -
Helpful -
Hug
3 Reactions"It may take months or even a year or longer for you to feel somewhat normal."
-------------------------------
I think this is correct. I'm still seeing an endocrinologist 4 years after I discontinued Prednisone. Contrary to popular belief ... the side effects don't go away as soon as you discontinue Prednisone. My "metabolic disturbances" and "hormone imbalances" are being monitored . My endocrinologist says some side effects from Prednisone might be permanent.
Based on the number of other medications that have been discontinued in addition to Prednisone ... things have improved. Most of my other medications were treating Prednisone side effects. My blood pressure normalized and 3 blood pressure medications were stopped along with several other medications. My primary care doctor loves to deprescribe medications although I had to talk her into stopping some of them.
https://www.aafp.org/pubs/fpm/issues/2018/0500/p28.html
--------------------
I was recently diagnosed with gout and allopurinol was started to decrease my uric acid level. My rheumatologist was surprised that I never had a gout flare. Then he said I probably never had gout flare because of Prednisone.
https://creakyjoints.org/about-arthritis/gout/gout-treatment/gout-allopurinol-inconsistent-higher-steroid-use/
Some problems that I never knew I had are being discovered.
-
Like -
Helpful -
Hug
2 ReactionsThis is timely for me. I had tapered to 1.5 mg and feeling poorly. I have been on prednisone since 2022 and wanted to get to zero this year. I decided to get an 8am cortisol test on my own instead of going through my big HMO. I did not have prednisone for 24 hours.
The test value came back at < 0.1 which means I was producing zero cortisol! I did take the results to the rheumy and she said go back to 5mg and get your PCP to refer to an endo. My PCP wrote the endo group who said they do not look at adrenal insufficiency until I have been off prednisone for a month. SO! I am back to managing this myself. I am at 3mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery.
Wow! This us all good info. Do you mind my asking the cost if the test you did on your own? Are you in the US?
Thanks!
"I am at 3 mg and will stay there for 3 months and do my own cortisol test again. I will not be tapering further until I have some type of adrenal recovery."
--------------------------
Just so you know ... I stayed on 3 mg of Prednisone for 6 months waiting for my cortisol level to improve. After 6 months my endocrinolgist said my cortisol level was "adequate" on the day it was tested. She wouldn't guarantee my cortisol level would stay adequate after I stopped taking Prednisone because the amount of cortisol I needed would vary from day to day.
The surprising thing to me was that 3 mg of Prednisone was considered to be a very low dose and there was no need to taper from 3 mg to zero. Apparently I could just discontinue Prednisone since my cortisol level was adequate as long as I didn't need Prednisone to control my symptoms of PMR.
My endocrinologist said I would begin to feel better after I stopped Prednisone. She gave me permission to restart Prednisone for "any reason if I felt the need." Her only request was that I call her first before restarting Prednisone. She said the best way for my cortisol level to continue to improve was to stay off Prednisone.
-
Like -
Helpful -
Hug
3 Reactions