I was talking to my brother who lives in Wales (I am in Tasmania) this morning, he also has PMR. He was telling me that he has been to see a new rheumatologist whose initial response was that he had had PMR for too long (7 years). I am not sure if she was of the school of "PMR only lasts for 2 years" ? But she did say that if his adrenals hadn't woken up, and I gather she was going to order a synacthen test, that she would prescribe a drug to awaken them.
Now I have read on here that there is nothing to awaken an adrenal system except time and patince - people's thoughts?
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Louisa1840
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My Endocrinologist is a great believer in Hydrocortisone given 4 times a day. I was on 4-5 mgs of Pred. This would have been 20 mgs. He said that it works more like natural Cortisol production - ebbing and flowing, whereas Pred is more static. The Hydrocortisone is more likely to stimulate and encourage the Adrenals to wake up and work.
I didn’t follow his plan, I was symptomatic and it turned out to be LVV/GCA. I am not sure how the plan would have progressed. Reduction and tests I imagine. I still have an emergency injection kit of hydrocortisone because I was testing under active for Adrenaline. However, at 5 mgs that might be normal as my needs were being met.
This is all I know of that might be your brother’s treatment. Sorry I can’t be more scientific.
Well it is news to me!!!! The only thing that will stimulate production of cortisol is LACK of corticosteroid in the system. As SJ has explained, using hydrocortisone is more likely to ENCOURAGE that because it is out of the system more quickly and so the body registers the lack of corticosteroid more often and regularly, signaling the lack of steroid to the pituitary which governs it all, The most important time is midnight-ish - hence the preference for not taking pred later in the day.
Unfortunately, the problem in PMR/GCA is that hydrocortisone, although a corticosteroid, has a far lower antiinflammatory effect than pred so if the disease is still active it doesn't manage the symptoms as well. And if you are a Long PMR-er - you need a rheumy who believes in it ...
Your brother may as well have a Synacthen test if they are offering it. It will be interesting to know what drug they have in Wales that wakens the adrenal glands!
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