having been on Pred for 6 years my body has stopped producing cortisol. I take 6mg of Pred each day and wonder about switching to hydrocortisone? Does anyone have thoughts on this? trying to do a bit of research before I next see Rheumatologist.
Many thanks
Have you had a synacthen test to show the adrenals aren't able to function? Though it is early, endocrinologists prefer to wait until a daily dose under 5mg, 3mg provides a more informative result. If not - why do you say you aren't making cortisol?
It has only stopped producing cortisol because you are taking enough pred to do the job required by the body of cortisol. Like your central heating boiler doesn't produce more when the room with the thermostat is warm enough for whatever reason, be it sun on the window or the woodburning stove being on.
Although theoretically being on hydrocortisone might prod the adrenal glands more effectively it is also possible that it won't manage your PMR symptoms as effectively and that therefore depends on whether the underlying cause of your PMR symptoms is still active.
Many thanks for your reply. yes I've had the test and result showed I was not producing cortisol. If I try to go below 6mg I feel unwell which probably indicates that PMR is still active?
Not necessarily and it depends on what you mean by unwell. I felt permanently post flu from 7mg to about 5mg with low spots in the day when I felt like I had nothing left in the tank to function and I went back to having solid sleeps . When my adrenals started to work it was quite obvious.
See Snazzy's response. They won't be doing much yet - it will take a lower dose of pred to wake them up and at this stage you have to balance the process between the two needs.
Who did the synacthen test? The GP I imagine since it was done at too high a dose to be meaningful. If you really aren't producing any cortisol you need to be referred to a specialist endocrinologist - but I bet I know what they would say ...
How very succinctly you have explained this - such that a lay person can comprehend it well . Thank you for always being there with pinpoint answers .
Hello. Have you tried going below 6mg? The body will stop producing cortisol while it doesn’t need to ie. the Pred dose is more than enough. 6mg is probably still too high for most for the adrenal axis to be needed to be brought back into action. This is why the Synacthen test to check for the ability of the glands to function is usually not done until below 5mg. My adrenals didn’t wake up fully until about 1mg or less, before which they were highly unreliable. I had a test at 4mg which was so so and another at 1.5mg which was great. I started on 60mg nearly 3 years ago.
Your comment is a help to me ! I am down to 3.5mg after starting at 40mg. After about 8mg, each small drop brought on more fatigue etc., however, I am managing to gradually work through this issue each time. I don't expect miracles. 
How fast are you dropping?
14months ago I started on 40mg for three days and then dropped to 20mg. My GP is allowing me to control pace of tapering. I dropped 2mg. quite regularly until I reached 10mg. then I started to drop by 1/2 a mg. I had to go up once from 5mg. I even went slower by dropping from 4 to 3.75 for 10 days before going to 3.5 which I am at now. After 2-3 weeks I will try to drop to 2.5
Personally I think this is way too fast for the adrenal function to catch up. For comparison I was taking an average of 8 weeks to drop 0.5mg down to 3mg and 10-12 weeks per 0.5mg down to 1mg. and and I still felt tired. How do you decide when it is time to drop?
Of course we are all different. What I call discomfit some others might call pain. I occasionally take Tylenol , if it is discomfit, it may be osteoporosis or osteoarthritis , I have both, and nothing to do with the PMR I I accept the idea that if I feel I am tapering too fast, definite pain, I would increase the prednisone. I have done this once, and when I thought my body was ready, began to taper again. I know I will never get back to the agile condition I had before PMR, due to age and other issues as well as the PMR. I am trying to get to a level on which I can function in an independent manner, without unbearable pain.
Me too Noosat. X
I think you can only get hydrocortisone from an endocrinologist, that's what happened to me. It does nothing for inflammation, just helps to wean you off Pred and at the same time give your adrenals a chance to wake up. I felt very very rough for months until the adrenals gradually started to work again. With hindsight it was obvious I still had PMR at the same time, I was pressured to get off steroids too soon.
At a high enough dose it WILL manage the inflammation - Megams has been using HC instead of pred for some considerable time. But you have to spread the total dose over the 24 hours as its duration of efficacy is much shorter than that of pred.
Oh Ok, I was going by what the endo and GP told me that it didn't work on the inflammation, it was just to substitute for adrenal function. I had to take my dialy dose spread over 3 doses, 1 in morning then half later then another half at night I think.
It isn't as efficient at it - but it does have some anti-inflammatory effect.
Many times I felt like I was dying when I switched from Pred to HC, unable to do anything for about 6 mnths. All because stupid doctors told me I'd been on steroids too long and tht the PMR must have gone, even though inflammatory markers were still high. And now it's back with a vengence and they're calling it Refractory PMR. I've lost all faith in rheumatologists.
One man's (i.e. our) expected PMR is a rheumy's refractory PMR.
Yes, as the very informative debate above has shown , until you reach a level below 6mg right down to 3mg your Adrenal Function will be sluggish and it takes time for the body to take over the job of Cortisol Production that the Steroids had overtaken. The Syn Test is unlikely to be giving you an accurate result of what's going on .
The Adrenal Phase during Tapering can have some of the worst side effects for many people including aches , Fatigue , Tiredness , loss of temperature control , sweating and mood swings , you can even have quite severe Pain and Stiffness but from Muscles , Nerves and tightened ligaments because of the slow Adrenal Function but the symptoms may not be caused by PMR activity. Sometimes taking another Pain Med , like Paracetamol , Codiene or a nerve or muscle relaxant will show this , especially if when doing so for a number of days at the standard dosing your symptoms greatly improve.
You will feel better when you increase in this situation , of course, not because it's treating a PMR Flare but because the Steroids are replacing the natural cortisol production again.
This is were the confusion can lie at these lower doses and why it helps to Taper slower, Pace Mire and allow your body to cope with Adrenal side effects.
The addition of a drug like Hydrocortisone may help you if you are suffering from Adrenal Insufficiency symptoms and not from PMR symptoms by taking the edge off some of the severity of side effects until you get to 2mg or lower and your Adrenal system is fully functioning again.
It may also help to reduce the confusion that these symptoms can cause , because although HC can help inflammation to some extent it won't have the same effect on active PMR symptoms at the doses you are given as a steroid "Sparer" .
Therefore , if PMR like Pain and stiffness and Flare symptoms continue to get worse despite using some Pred with HC , you can feel more confident that your PMR is still active or flaring and then know you need to increase the Steroid , even in the short term, to resolve things.
Thank you very much to everyone for taking the time to give me some advise on this topic its a lot more complicated than I was given to believe and you have all given me food for thought . Need some time to mull over all the posts . Now feel a bit confused as Rheum has said to stay on 6mg at present because synacthen test showed I was not producing cortisol but you all seem to think that test done too early as I am on too high a dose of pred. Would like to get off the steroids and wonder about trying slow tapering again as I don't see specialist until June.
very much appreciate everyone's thoughts and comments.
My rheumatologist was cutting me down 1 mil a month. That did not work for me. Not only did my pain come back but the exhaustion from the lack of cortisol was awful. We are now cutting back 1/2 mil about every 6 months. I am finally after 5 years doing well with that. In my case my body does not replace my cortisol with the 1 miligram cut back. I think I am the minority, but you might discuss this with your doctor. Still those of us in the minority do exist.
I really do think they have no idea what it is like to have poor adrenal function.
It is awful I know. I found cutting back only 1/2 mil of pred every 6 months solved my cortisol problem Yes it will take a long time to get off the pred or at least down to the minimum. But not having the exhaustion is worth it. You might talk to your rheumatologist about that.
Low glucose, due to low cortisol? 
A bit about cortisol levels etc
Has anyone had to stop actemra?
Blurry eyes - caused by Pred? And resolving after Pred stops?
Cortisol
