First of all, thanks for the recent link that points to the PDF pamphlet on adrenal insufficiency. After reading it, I'm almost certain to be experiencing it to some extent.
I've had GCA for 2.5 years, starting at 60 mg and now down to 2.5. I've been decreasing using the DSNS method, but as of now am experiencing nausea, very loose bowels, lower back and leg aches, periods of hot flashes, etc. but no fever.
My understanding from this forum (and not my rhemy who is of no help whatsoever) is that the adrenals have to be stimiulated in order to start working -- and therefore I am to expect to feel symptoms as I decrease the prednisone amounts. But here's the question:
Can anyone offer any guidance about when to up the dose (because the symptoms are too severe) as opposed to merely "grinning and bearing it?" In other words, I am willing to dwell in this discomfort if that's what it takes to wake up the adrenals -- but not if I'm heading for adrenal crisis.
I do know that I can be tested -- and the rhemy did give me a test (I forget the name), and the results indicated I was on the low normal edge of being okay -- but that was about 2 months ago. I could go back to him and ask for another test, but I'd sure like to hear all your suggestions about "when to give up and take more prednisone, versus when to stick it out and suffer."
Thanks so much.
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montebello
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I have been referred to an Endocrinologist who has been helpful in this area and who is keen to help, possibly using hydrocortisone and doing the necessary blood tests. Having said this, you have moved fast in your taper and may benefit by going up a bit and doing this last little bit of taper in fractions of a 1 mg tablet. You have nothing to lose now. Some people remain on your dose forever. Good luck, it’s tough!
I had to go slower than the DSNS otherwise I felt too ill. My reductions ranged between 6-14 weeks with 0.5mg being introduced at a rate that varied too. It is a good question you ask. I had a few collapses and had to take 2mg or so and then do nothing for the day and sometimes the next . Not all bugs cause a fever and intense or deep muscle aches suggest it might be. Pred should make you feel better if it is insufficiency.
I avoided too many crises by curtailing my activity in order to stay low. This meant, in my case, living a rather grey life for about 18 months. If you feel really unwell even if you are taking it very easy, then I would take a couple of mg and see how you are later. As SheffieldJane says, it might be that you need to up a bit and then slow it right down.
I loved your description of a rather "grey" life Snazzy! That's exactly how I feel, my life is so BORING! BUT it is necessary to cope with the adrenal insufficiency. I'm currently doing okay on 2 mgs of pred but I'm VERY tired most of the time. No energy to make life more exciting!!!
Were you significantly better at 3mg? Only you can judge whether you can cope with what you have at any time. And whether you can accept doing less as SnazzyD did. I personally wouldn't taper any further and wait it out where you are if you can - and if you can't go back to 3mg for a lot longer before going down to 2.5mg. Long pauses at a new dose are required.
The HPA axis (hypothalamus, pituitary, adrenal set up) has to be stimulated but that is done by there being as close to zero pred as possible in the body at about midnight which is what triggers the body to then produce cortisol next morning. It sounds as if your adrenal function is returning if the synacthen test showed low normal so now it is a case of them building up their production. And it takes time.
Thank you. BTW, it was a " cortisol" test, with a result of 5.9.
Bottom line, from your comments and others, is that there is no hard and fast rule about whether to stick it out or up the dose. It's really up to the individual.
Anything over 5mcg/dL at 8am is normal so yes, normal for day to day needs but not if there is much in the way of stress or activity. when you are likely to need more.
Yes following this. I don't have clear symptoms such as nausea, loose bowels etc but do feel a bit morose, unmotivated, unusually vulnerable and very randomly sore muscles in my legs and feet. Some of ot could be PMR but i am really keen to provoke my adrenals into action. How i feel is limiting my life but i am prepared to put up with it if it will get them going. Is it ever a tactic to temporarily go to full dose (in my case 15mg) to see if the muscle pain goes away? And then back down to original dose ? I can no longer tell if the PMR is active or not
You have described exactly how I feel..the low mood is the difficult day to day, as that has an effect on everything else....but we travel on.... Take care everyone ❤️
I feel exactly the same and it’s clear to me that my PMR has not gone. The challenge of tapering through the lower doses is exhausting but my nature is to accept the challenge. A synacthen test confirmed that my adrenal system could work so I am determined to make it do so. But we all know that PMR has its own agenda . Im fed up with it.
In order to manage Christmas away from home I treated myself to 5mg daily and felt so much better. But I can’t face tapering from a higher dose again so I tough it out, living each day the best I can. I haven’t consulted my doctor about it, can’t really see the point. It’s good to know I am in the company of sympathetic sufferers here.
Well that's exactly what I'm about to do today..... I'm going up to 5 mg for a few days (from 2.5) to see if I feel a difference. If I do feel a difference, then at least I know why. If I do not feel a difference, then maybe something else is going on.
But you can't tell if it is sluggish adrenal function or PMR at this level unless you have definite PMR symptoms. It really is difficult and a balancing act for both,
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adrenal insufficiency 
Adrenal insufficiency?
Adrenal insufficiency? 
