I’ve been recommended to possibly try this once I get below a certain level - I think as a way to encourage adrenals to wake up. I think I read somewhere on this forum that there is no real evidence this works- but I’m happy to try.
However my question is- if you skip a day on pred why do you not go into adrenal crisis? I would have thought the pred would be out of your system by the second day- putting you at risk? Tried to research this myself but no luck
My question - Advised by whom, and at what dose? If by an endocrinologist then he should have explained why if by anyone else, then I'd be inclined to be a bit sceptical.
Most people find a very slow taper, small steps - which is probably more helpful for adrenals and certainly for your PMR . Talking of which what dose are you on now?
It doesn't work well in PMR because if the underlying cause of the PMR is still active then it will flare in that day, the antiinflammatory effect does usually last long enough. Some people struggle to get through 24 hours.
Where it does work is for people with other problems pred is used for and if it is used from the start - by taking it as double dose one day, none the next, there is less suppression of the adrenals from the start.
At this stage of low doses you are having to balance the needs of the PMR and the adrenal function problem. It is unlikely you would go into adrenal failure after one day without the dose - many people forget a dose and survive OK. I wouldn't recommend doing it for more than a couple of days though!!! One friend with PMR forgot her tablets on a trip from France to the UK and was fine for a week!
I didn’t feel great doing that but instead slowly introduced a 0.5mg dose. I tended to feel rubbish on the dose day as if it was a delayed effect from the no dose day.
At what level are you talking? I would imagine if you are at 0.25mg it would be okay
So it was a GP but she wasn’t advocating I do that at the moment- it was just mooted as something that can be worth trying further down the line.
I only asked this question out of curiosity as to how that works- as I had the impression that you had to take pred every day otherwise you would go into adrenal crisis . Thanks for clarifying PMR pro!
Had your GP had experience of anyone else finding it helpful? If you were at the point of having zero as the next dose I would have thought that would be fine. I am a bit sceptical otherwise. I think I would let my adrenals wake themselves up slowly and surely.
As we taper down to vanishingly small doses by the end, I think the way to do this is to start tapering to zero in the same way, gradually introducing a zero day until zero takes over completely. I successfully did this in mid-2020, using the DSNS taper method, and at 1/2 mg zero became my "new dose". This way one doesn't abruptly stop whatever the tiny end dose is, and also avoids the confusion alternating dosage tends to cause the body in PMR patients.
Incidentally I wasn't ready to discontinue pred at that time, after all. Am currently in same process of slowly tapering and once successfully on 1/2 mg again will be using same method to achieve zero, hopefully more reliably this time. I have to say adrenal-wise it seems much more difficult this time, and I think the intervening years, with several months at relatively, for me, high doses dealing with a major flare, must have had an adverse effect on adrenal capability.
My rheumatologist said I could do this 🙄. Not entirely sure about it though, feels counter intuitive. At the moment, I’m doing Pred in the opposite direction. Starting low and working my way up to the lowest dose I can cope with without suffering horrendous side effects.
Careful - creeping up rarely works as you are always playing catch up
Prednisone only has a half life somewhere between 2 to 4 hours so you really need to take it every day if you still have active PMR.
Why do we only take it once in 24 hours I wonder.
That is why pred is used - single daily dose is likely to achieve better compliance and for the majority of patients the antiinflammatory effect does last the best part of 24 hours. If you take it in the morning, the return of stiffness is overnight and not noticed by most patients, A minority find splitting the dose achieves better symptom control.
I just wondered because if the half-life is 4/6 hours, it’s leaves a large part of the day sun optimal.
It isn't the half-life that matters and it is actually more like 2 to 4 hours. When the entire dose is taken in one in the morning, soon after the shedding in the body of the inflammatory substances at about 4-4.30am, it deals with the entire batch of inflammation at that point and then the antiinflammatory effect persists for 12-36 hours depending on the person. Obviously anyone in the longer half will have good symptom control until the next daily dose is due. As I said, some at the shorter end do get a better result by splitting the dose. That is also why it is important to take ENOUGH pred to clear the inflammation up completely. Any left over will build up over time until there is enough to cause symptoms. There is no virtue in trying to "manage" on too low a dose just to be lower - it will turn round and bite you on the bum!
In desperation I’ve taken 5mg on the last two days. My blood sugar has doubled and I’m struggling to get on top of it. Well my body adjust favourably regarding blood sugar or am I always going to have to fight it? Thanks
A couple of people, Koalajane and tangocharlie if I remember rightly, checked their BS and identified when the effect of pred was greatest and then didn't eat in that time which they found helped a lot. If you eat any carbs in that period of increased BS due to pred, the level rises significantly. I hope they will reply with their experiences
thanks x
Yes I was really disappointed with the dietician on the PMR AGM talk who didn't mention the latest research or the effects of eating a low-carb diet. In fact she gave out generic advice re BMI and said have a quarter of your plate grains - well no, they're good for you as they have fibre but they're high carb which contributes to weight gain. I found, as did koalajane, that nothing much happened to my BS level for about the first 3 hours after taking Pred, then the BS level rose, but still within normal UNLESS I ate something high carb/sugar in which case it shot up through the roof. I don't have metabolic syndrome ie Type 2 diabetes so my levels returned to normal OK but that means in the process of doing that your body stores the excess glucose in cells and you put on weight. So best to avoid sugar and carbs especially 3-7 hours after taking Pred. See my recent post on my experience with the ZOE programme.
I tried this . One day 2mg next day 1.5mg for a month. At the lower doses I found dropping every 6 or so weeks didn’t work.
I used DL taper to get to 2mg and that worked fine for me 😊
I have looked at a lot of info on 'waking up adrenals' and have never heard of that as a method, but I'm not a medic. I do know from experience that it won't harm you if you missed a day of Pred, though I once did it by accident and had horrendous headaches and fatigue by he next morning. It seems to me that if you take a very slow approach like the DSNS method it works better for many people. It didn't work for me, I couldn't get below 5mg no matter how I tried and when I forced myself to go to 4 as advised I hit adrenal problems.
Some Endos do suggest it, but not sure it’s such a good idea when you are trying to manage PMR at the same time….
Alternating day therapy is a recognised way of using pred in some illnesses, especially in children, because it seems to be associated with less suppression of adrenal function and that eases recovery. But that isn't the same as using it for tapering and isn't recommended in PMR. And definitely not for GCA.
Thanks for the info. I looked into how to wake up adrenals when I had problems a few years ago and there didn't seem to be anything you could do to nudge them along, just wait and hope.
Well persisting with a low dose of pred even when you feel ropey is the nudge they need!
Not if the adrenals are incapable of working, you just end up very poorly and in A&E like I did
That's different!!!
But you don't know if your adrenals are b*ggered or sluggish - even the synacthen test can only tell if they are capable of responding, not whether they can effectively respond and get back to normal. I ended up back on steroids, so will never know. If I ever get down to 5 again I'm staying there for life and not pushing it again
Another thing I've always wondered about adrenals. Normally adrenals would respond to a fight or flight stressful situation by setting off a process that releases things like adrenelin and cortisol. If our adrenals are suppressed by steroids, then presumably we can't respond to such events? Is this why we get flares when stressed or over-do things? Our brains see the stressors as being the equivalent of the sabre-toothed tiger but can do nothing about it?
That is the purpose of the emergency rescue injections.
I mean just re every day stressful situations while on steroids. Our bodies can't react to an extra stress eg an accident, illnes, sickness of a loved one, travelling etc. Are our bodies always on high alert and high cortisol?
No - low cortisol. That's the problem.
Even on high steroids?
From my post on adrenals - the affect when you are on steroids -
… in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena! Even on higher doses of Pred where perhaps you would not expect to feel fatigued or stressed you do, and that’s because you don’t get that extra “oomph.”
full post -
healthunlocked.com/pmrgcauk...
Yes that makes perfect sense and answers my question, thank you. Another thng the doctors don't tell you
Not sure all know tbh….
True, my GP admitted she was clueless when I had adrenal problems, so she got in touch with my rheumatologist, who at the time didn't know much herself. In fact it was me, with the help of people like you on this forum that worked out my problems might be down to adrenals. Things have moved on since then. I guess there aren't many of us on long-term steroids, maybe 1 in a 1000 patients. It seems to be left to the Endocrinologists to sort out problems and they're in short supply.
The steriods at any dose above about 10mg for long enough will suppress production of cortisol. At high doses of pred, the pred serves the function for things where you need corticosteroid, naturally in the form of cortisol. At a high enough dose it is unlikely you would suffer an adrenal crisis but there comes a borderline where your dose doesn't cover it - spikes of cortisol in stress can be multiples of the normal level.
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