Hi All
In January 2023 my basal cortisol was 316 nmol/L whilst on 2.5 mg Pred. Last week it was £21 nmol/L after being Pred free for nine weeks, i.e. no real improvement. I have had various aches and pains for the last 18 months but not to the extent that stops me functioning (but I am nowhere near as good as I was pre PMR). Should I read anything into the cortisol results? Need to go back to my GP armed with some advice please.
Regards
LBM1953
It can take anything up to 12 months after finishing pred for your adrenals to be working 100%, so unless you are suffering from any of the following - then it's probably just a matter of time - this from Medical New Today -
Symptoms
When the body is not producing enough cortisol to compensate for the missing prednisone, a person can experience a range of symptoms while the body readjusts. This is known as adrenal insufficiency.
People who stop using prednisone after a long time may experience symptoms of corticosteroid withdrawal syndrome, such as:
body aches
joint pain
a general feeling of being unwell
weight loss
fatigue
low blood pressure
darkening of skin color
changes in mood
In some older studies, researchers noted the occurrence of:
headaches
nausea and vomiting
inflammation
fever
Symptoms can vary in intensity and may last anywhere from a few days to several months after discontinuing the drug.
The severity and duration of withdrawal symptoms usually correlate with the length of time a person was taking prednisone and the size of their regular dose
So just monitor yourself, and always useful to carry some pred on you, just in case, and your steroid user card.,,
Many thanks for the advice. I certainly have some of the symptoms so will try and be patient. I am off to Singapore, NZ and OZ in a few weeks so will take a supply of Pred with me.
Enjoy....
Did the GP ever request a synacthen test? There is obviously some adrenal function but suboptimal and that will take time to recover. But the fact it doesn't appear to have improved in 9 months despite lower pred is disappointing, But really, it is early days.
If I remember my own results my Endocrinologist wanted me on about 25 mgs of hydrocortisone at those levels. He also issued an emergency hydrocortisone injection kit in case of an Adrenaline crisis. Fortunately my cortisol levels increased to normal range at 3 mgs Pred dose, but the emergency kit was still indicated. I am not sure what the advice would have been if my levels were underperforming at zero Pred. Perhaps a referral to an Endocrinologist would be helpful at this stage because you remain vulnerable. Forgive me if my memory has failed me on the numbers but yours seen to be below average with nothing to fall back on.
Hi SJ/PMRP. I may have misled you. There is a typo in my original missive, my reading last week was 321 not £21!!! My test results say that this level "....is not diagnostic of adrenal insufficiency..." As to a short synacthen test. I have mentioned it in the past to my GP who didn't seem to know much about it, so I guess I am not going to get much joy there. I am happy to go private but cannot find anyone that does them (I can find an ACTH test but this is not the same (I think). I will suggest an SST to my GP and if unwilling will further suggest regular basal cortisol tests say every three months to see if my readings improve. Does that make sense?
I assumed the £ was really a 3!
Synacthen is a "synthetic ACTH test" - the injection is the same as ACTH to stimulate the adrenals to produce cortisol. so it is probably the same.
The simplest is to ask for the basal cortisol at intervals and see if it does improve but I still think a referral to an endocrinologist would be a good idea. And if you feel really unwell at any point nauseated, confused, feel as if you are collapsing - get emergency medical advice just in case it is an adrenal crisis. Tell them you are a recovering long term steroid patient - and in the UK, call 999.
Guessed that!
Go on holiday -taking Pred with you as we suggested -and follow up testing when you get back… but obviously as PMRpro advised call emergency services if needed…wherever you are.
Adrenal Problems......
Worry of Adrenal function
adrenal function poor after tests 
Basal Cortisol Test Result
ACTH Stim Test Results
