I'm at 9.5mg of pred at the moment. A pituitary tumour resulted in damage to it in that my adrenals were affected to produce cortisol, hence PMR developed 3.5 years ago. I'm not sure if any cortisol is produced at all. Perhaps a morning cortisol test may reveal this dilemma?My question is at what level of pred will the adrenals produce cortisol if they are ever going to do - or does this vary with each individual?
I've tried to reduce below 9.5mg but had flares in my PMR journey 😕
Lack of cortisol is not usually a reason for the PMR we discuss to develop. You need to discuss the pituitary tumour aspect with your endocrinologist - if the pituitary is unable to produce cortisol then you will require some form of corticosteroid replacement therapy which can be in the form of hydrocortisone 2 or 3 times daily or pred once a day.
Return of adrenal function and production of cortisol after long term steroid therapy is very variable - in some people it returns without much trouble as they reduce the pred dose slowly and consistently. In others it can take much longer, The dose at which cortisol starts to be secreted is also very variable. It is a "how long is a piece of string" question.
Prednisolone is a corticosteroid just as hydrocortisone is.The pituitary tumour has damaged the pituitary gland that controls 3 main areas: adrenals, thyroid and sexual productivity. All 3 of mine are damaged.
Cortisol regulates inflammation in the body - my adrenals don't produce enough cortisol hence build of inflammation - hence PMR.
I will discuss more with my endo but its the lowest level of pred I can get down to that I need to know without flaring.
I am not sure you can blame the PMR on your adrenals not producing enough cortisol, although it may have triggered it.
It has, in my case, triggered it, originating from the slow growing pituitary tumour. The adrenals controls inflammation in the body as most of the forum knows. My adrenals are not being controlled, as they were before PMR, by the pituitary gland because of the damage to it.
I am well aware pred and HC are both corticosteroids but either can be used in adrenal insufficiency. However - lack of cortisol is NOT what causes PMR - most of us on this forum with PMR had normal adrenal function pre-PMR, Our adrenal insufficiency is due to long term endogenous corticosteroid treatment which suppresses production of cortisol and doesn't always go ack to normal or if it does, it takes a long time. Cortisol may regulate inflammation in the body - but not on the scale required to combat the autoimmune disorder which causes PMR symptoms.
Your primary requirement for corticosteroid is actually adrenal replacement therapy and you cannot test out how low you can go with regard to the PMR without risking an adrenal crisus. But there is no answer to your question - like the rest of us, you will have to slowly taper the pred dose and find out where you get stuck. No-one, even an endo or a rheumatologist, can tell you that dose.
I was actually looking for an average dosage level of pred for when the adrenals may or may not produce cortisol.Different people have different reasons what has caused PMR - in my case a pituitary tumour has caused it by impacting on the adrenals, along with impact on the thyroid resulting in underactive thyroid gland as well as hypogonadism (low testosterone) !
Unfortunately the slow growing tumour has slowly caused damage to all 3 areas - especially the reduction in cortisol that controls inflammation and ultimately PMR - IN MY CASE!I still have 25 % of the tumour that may or may not cause further future damage. In essence I've got a fair bit to deal with!
I will discuss with my endo and rheumy any further info or advice I need !
I was actually looking for an average dosage level of pred for when the adrenals may or may not produce cortisol.
The link [in reply below] I forwarded explains ….
I've read the link a couple of times and very informative thank you.The following from the info confirms my opinion:
'the protective activity of anti-inflammatory and antioxidant adrenal hormones like cortisol helps to minimize reactions like swelling and inflammation in situations ranging from allergies to autoimmune disorders.'
Thanks for your reply 👍 🙂
Yes, different people DO have different underlying reasons for the symptons that are termed PMR, I said that, I thought quite clearly. But yours is not the same cause of PMR as most of us here. And whatever the underlying cause, if pred is used to manage it - THERE IS NO AVERAGE DOSE AT WHICH ADRENAL FUNCTION RETURNS. Theoretically, 7mg has been regarded as the physiological dose for many years. However, more recent studies at Imperial in London suggest that as little as 2mg pred is enough to suppress production of cortisol by the adrenals.
And since you say your tumour has damaged the pituitary and that presumably means the ACTH secretion is compromised - all bets are off as to what dose of pred you are talking about.
I'm not sure if any cortisol is produced at all
Well it’s highly unlikely at your current dose -it’s above the usual level your body would naturally produce…so no point in testing.
Maybe have a read of this if you haven’t already -
healthunlocked.com/pmrgcauk...
..and your flares are probably PMR related rather than adrenal.. below 10mg is a lot more difficult than many doctors admit. Way forward is slow tapering plan and small steps
Tapering plans - healthunlocked.com/pmrgcauk...
Have you been diagnosed with Acromegaly?
Acromegaly is known to cause adrenal insufficiency, low testosterone, and decreased thyroid function.
I'm not sure you would be able to come completely of a steroid that is treating your adrenal insufficiency due to you still having a 25% remaining pituitary tumor.
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