I've heard a number of times here that you can start to feel adrenal insufficiency from around 7 mg pred all the way up to 10.
My endo thinks that I shouldn't feel anything til 5. She cites that as what the adrenals produce all on their own.
I really like her a lot, but was wondering if there are any arguments for the higher numbers. Also, though your experiences are gold to me, I'm thinking she might want some academic citations.
Any help? Thanks
Hi winfong I’ve got no research citations but only my experience. I was ok until about 5mgm but it depended hugely on how much activity I was doing. I was very cautious, it wasn’t t till about 3-4 that I had extreme fatigue, low blood pressure & some lightheaded episodes. I persevered with slow tapering, the adrenal symptoms improved gradually over about 4-5 months. I’m ok now, settled on 1mgm since February. I’ve never had the cortisol tests, the gp pointed out that if I increased pred to relieve symptoms it would only delay the adrenals starting to work again. Hope that helps.
Hi winfong, I can't quote technical papers but I think it can/does happen from all those levels but as with many things it is something specific to you. I. E. The individual, its not a case of one answer fits all, we are all (thankfully) different. Sadly it would appear a thought, not everyone accepts.
Two things: some people do not metabolise pred as efficiently as others so you'd expect such people to feel adrenal effects at a higher dose, smply because they aren't absorbing quite as much as expected. The other thing, a response to 123mossie 's comment. It is generally not a good idea to increase pred to deal with adrenal symptoms, only with PMR symptoms. I had to increase pred quite drastically early last year, and was at a higher level than I'd been for years, for a time higher than since my first year in 2015. While I was still taking about 5 mg my doctor had me do a morning cortisol test. I went nearly 60 hours without pred before the test, yet I tested in exactly the middle of the normal range. So increasing pred in order to deal with increased PMR symptoms may slow down the adrenal recovery, but not necessarily completely derail it. Full disclosure - I did find that an increase from about 1.5 to 3, the first time I got to 1.5, did seem to interrupt the adrenal recovery, but what is one to do? There's no point taking pred for several years, then taper too low for effective symptom control to continue. And apparently in the end neither of my two increases seem to have had lasting ill effects (one quite small but at a time when the adrenals were only just recovering the first time, and then a much greater increase several years later, both times after having been for a time successfully at a very low dose).
One other thing. I didn't notice fatigue in particular at 7 mg. But I did experience a feeling rather like panic, completely without external cause. Later decided this was the adrenals stirring! This oddly disquieting sensation lasted for a few weeks but I have no memory of when it disappeared. It must have faded away within a short time, unnoticed. The next adrenal issue was at 4 mg when I experienced the "deathly fatigue", but as I had no PMR symptoms at the time I did carry on with my DSNS taper, at that time I think it was .5 mg per month or maybe every six weeks. It was very slow. I've luckily always had doctors who encouraged me to maintain a dose level which controlled the PMR symptoms, but I never increased for adrenal-related issues.
I think nearly everyone does get back their adrenal function eventually, but there are a few who don't, so it's good to maintain a very slow taper even when PMR seems to be in full remission.
I got knocked out around 5mg.
Hi winfong,
I'm currently on 5mg but started to experience an upsurge in fatigue from about 8mg down to 7mg. I felt confident it wasn't specifically my PMR returning as I wasn't experiencing my typical PMR symptoms and the symptoms I did experience would fluctuate in intensity until they'd begin to ease.
I've continued to taper ½mg of pred over 6-8wk periods mostly, although it did take me 10wks to drop from 6½mg down to 6mg as I knew I wasn't quite ready after 6wks. ('Stuff' happening)
I've consciously taken it very slowly and carefully, following all the advice I've read here. So far so good!
Everyone's response/reaction at this stage will be different, as others have already stipulated, so as individuals we must try to be able to recognise how we're feeling and identify whether our symptoms are most likely to be the PMR re-emerging or our adrenals trying to re-awaken.
I definitely feel though that it's not possible to determine the exact dose that will cause the adrenals to start firing up again, as this will obviously differ from person to person.
As with tapers at higher doses where 'yoyoing' up and down doses can cause each consecutive taper to be more difficult than the previous attempts, so yoyoing up and down the lower doses can confuse the adrenals.....one minute they're not needed as the steroids are supplying enough cortisol and then suddenly there's not enough again and they're being called upon to manage the shortfall. So, slow and steady is more likely to produce a successful outcome.
After 5 years of pred for GCA eventually tapering to 7.5 mg, I began to experience high fatigue, dizziness, & not feeling well. My Rheumi who had looked after me since I was diagnosed was pretty sure it was to do with adrenal fatigue which she said that despite some Endocrinologists saying it doesn’t start until at the earliest 5mg, in her experience with patients that was not the case. The Professor of Endocrinology at Oxford who I was referred to totally agreed & said he sometimes started testing patients who were on 8mg due to the way people’s bodies absorbed prednisolone.Hope this is useful.
May I come at this from a different angle? To put it tersely, does it really matter if you have differing opinions here? So, say you get to 7mg and feel tired, anxious, feeble etc, (but no PMR of course), you still need to reduce. The only way your adrenal axis will kick in is by sustaining that deficit between what you’re putting in and what your adrenals can muster. The only difference would be if she wanted you to go too fast and you really couldn’t cope and then it would be a case of saying, “no I didn’t, I needed to go a bit slower to function; I’m did this…”. This is what I had to say to my Endo after they wanted 1mg per month from 4mg. I tried it but couldn’t get out of bed. For some people 7mg is their go back to safe place to feel better, but for me it was the worst of both worlds. It was too little Pred to feel ok and too much for the adrenal glands to realise their time to shine was here. That happened around 5mg. Therefore, it’s not like needing to be able to argue to go back up because of PMR inflammation, it’s knowing yourself that you find going to the shops too much right now because your adrenal function hasn’t got going. Your action is to change your behaviour and plod on with 0.5mg a time over 4-6weeks (that worked for me) but you might feel shabby. As has been said, unless you feel quite ill (it does feel like you’re in deep trouble) you don’t go back up to feel better, like PMR. So I’d say, do what she suggests and if you feel truly grim, slow down.
I'm possibly asking a ridiculous question but if you get down to those sensitive Pred levels when fatigue etcetera becomes overwhelming and you're not sure if it's AI or PMR symptoms, can the answer some from an ESR or CRP blood test?
It’s a tricky one for sure. For some who have always had inflammatory markers that truly reflect what’s going on it’s a good guide. However, marker increase can lag behind symptoms and also other types of inflammation causes can cause a rise. I got through by trying to spot patterns, looking back at old symptoms to see if they match up, taking it really really easy each day and not pushing it if I felt off. I didn’t have PMR but got plenty of fluey type aches.
Thanks Snazzy. I try to keep notes in my diary, which feels very self indulgent as reading them back it sounds like I'm self obsessed.
I keep a diary because it can be really useful because it’s amazing how easily one forgets odd symptoms and/or loses passage of time that things last or not.
Especially as we get older! ☹️
I started keeping notes on late hubby when was ill so I knew what was going on -still doing it now mainly for my OA and BP….
4mg for me with big flair. Settled back down to 5mg. Hope all stays well for you.
Experience. Which trumps theory all too often, In fact, it is now thought that the body copes adequately on as little as 2mg - but that doesn't mean you are safe in all circumstances.
Adrenal insufficiency can apply at even higher doses because the adrenal response to stress is blunted. In the event of a stressful event - accident, injury, illness, emotional stress too - the adrenal glands would normally produce a spike of cortisol to prepare the body to cope with it. It may not be able to do so quickly enough and an adrenal crisis may be the result.
The variation in the dose at which people are affect may have a range of underlying reasons. The bioavailability of pred (the amount absorbed by the body) varies it is thought from 50 to 90%. Someone takes 10mg and absorbs 90% of it, you take 10mg and only absorb 50% - there is a massive difference straight off.
And it appears from some studies that there are people whose bodies just don't respond to pred in the same way as others - possibly because their pred receptors, the links on cells that pred attaches to so it works, are different in some way.
There are bound to be other factors - and none of them needs to to be 100%, a few slight reductions all add up and can be enough to cause trouble. Any doctor who claims black and white answers to any biological question is in cloud cuckoo land.
Regarding the bioavailability thing - I’ve switched from 2.5mg EC + 1mg plain to 3.5mg plain-Jane and I’m feeling better for making the change.
PMRpro, you wrote
"The variation in the dose at which people are affect may have a range of underlying reasons. The bioavailability of pred (the amount absorbed by the body) varies it is thought from 50 to 90%. Someone takes 10mg and absorbs 90% of it, you take 10mg and only absorb 50% - there is a massive difference straight off.
And it appears from some studies that there are people whose bodies just don't respond to pred in the same way as others - possibly because their pred receptors, the links on cells that pred attaches to so it works, are different in some way."
It would be great if you could share any research or articles on these topics.
I'm on 5mg Pred at the moment and have stuck there since January, initially at 45mg 3 years ago for GCA then PMR. I shall sit comfortably at 5mg for a month or two longer as I've just had hip replacement surgery and have no energy for dealing with the symptoms of adrenal withdrawal. My sticking point was 8mg down to 7mg. I felt awful, nauseous, jittery, wiped out. Taking Pred. early morning, at about 6am with some kefir, then going back to bed, seemed to help. Also going really slowly - about 8 weeks between half mg tapers. I'm not sure what's happening at 5mg, but I do know that I needed just a boost during the actual surgery and then back to the 5mg with no evidence of insufficiency symptoms. I have a strong suspicion that my adrenal function is/has returned. I shall only know when I can taper again.
I have been on 7 mg for about 10 months because of severe fatigue, had not lowered until now. I had a morning cortisol test last summer,reading was very low (92)...6 months later in November it was 166.....classes as Adrenal insuffiency. Feel awful some days, jittery, weak,.low, no energy!.....but thankfully there are some days when it seems easier. Had chat with Rheumatologist last week, we agreed another cortisol test, hopefully going in the right direction. I have decided to start a VERY slow taper to 6.5mg....he also said maybe 5 mg will be where I have to stay.....who knows, as we say on here, symptoms are key, as is QOL.....Hope that helps....
He was really on form at the meeting we had last night!!! Some really interesting stuff!
Lucky you, he always is!....may I ask what it was about?....if I'm intruding, say so!
It was OMERACT and it was pointed out that flare/relapse/recurrence need to be defined because at present it is a case of "it means what I say". So we were looking at that idea - and all the R-words you could bring in and how to sort them out! Max kept stirring the pot ...
Yes, he would, he's seems as frustrated about things as us patients are....the three R's that often come to my mind on here is, Ridiculous Response from Rheumotologist!
You should have been at the meeting last night and thrown those in 
Max knows how I feel about Rheumies, their response to patients etc...I tell him every week we get questions on our forum from patients that are in pain and can't cope with what their Rheumie has told them to do....
Even my DIL with a swollen painful ankle/toe has been told by her GP, it's not Gout or Arthritis because blood test for inflammation was normal.....told my son, so have mine been most of 10 years....but luckily she is soon to have an MRI...she believed her GP, but why wouldn't you till you learn these things!...being her MIL I didn't want to preach!
I felt excessive tiredness, albeit briefly when I reduced Pred to 7 mg. I don't remember feeling particularly tired since then until now that I am on 1.5 mg. It could be that during lockdown I didn't have to go to work, life was easier, I got more sleep, and this helped me feel a lot less tired.
Thanks for this. It takes some of the mystery out of reducing. It clarifies for me that, if I feel atrocious some days, I’m doing too much for my pred/cortisol level- at the time. The suggestions to reduce stress and get sufficient rest seem the only way to get off pred and allow adrenals to resume cortisol production.. No quick fix or shortcut.
My Endocrinologist tested my absorption of coated Prednisalone and declared that it was fine. I have however, been experiencing really extreme fatigue and spending a lot of time literally lying on the bed, the only place I feel ok. I know I can’t let this carry on and there may be contributing factors such as raised glucose levels. I have given up Tocilizumab as it really causes abdominal pain from the injection onwards. I sometimes feel quite “ speedy” in the early hours and wonder if it’s a shot of adrenaline. My Endocrinologist wants me to get down to 5 mgs of Pred then he will test my cortisol responses and I suspect will want to encourage adrenal recovery with hydrocortisone 4 times a day. The trouble is, I am flying solo with Prednisalone at present and am not sure whether the GCA/LVV is under control. Hydrocortisone won’t help the fact that I still experience PMR type stiffness and pain but not constantly. I am considering an arthritis medication, such as Methotrexate because I may be confusing Psoriac Arthritis pain with PMR symptoms. It’s all very confusing. I often feel dizzy which I associate with Adrenal function. I wonder how precise these blood tests are. A mad balancing act, done in the dark. No help at all I’m afraid.
Except that I am taking leflunomide, I could have written this post
I may end up with that too. The steroid sparers do seem to be horrible and horribler. I must try to go into it with a positive attitude. The GP is also brandishing Metformin, Statins and then Alendronic Acid when I get my DEXA scan results with 6 weeks. Still on 6 mgs of Pred.
Sounds like you’re are managing well.
All is well. Had a great visit with my endo. I think I may have been simply misunderstanding what she had to say about the 5 mg bit. She seemed quite happy with me at 7/7.5, as well as having some suggestions about dealing with the mania/insomnia/irritability.
How does the mania manifest? I have the insomnia and irritability.
I don't think it's all that different from what a lot of people experience on higher doses, especially early on. It just seems to stick with me at certain times.
A better description would be "hypomania," but mine is usually less positive than that's usually described. My set of symptoms would probably include:
Jumpy or wired
Increased agitation
Racing thoughts
Distractibility
Obessive-compulsive thinking
Anxiety
An inability to "switch off"
Overconfidence
Aggressiveness and impatience
It's a roller-coaster, though, so the next day or two would be much more sedate (and typically feeling exhausted).
Thank you for sharing your symptoms. At 6 mgs I no longer experience anything as overt as that. Mostly irritability, malaise and low mood, receptive to distraction thankfully. The symptoms you describe sound exhausting and challenging to manage.
It's actually getting a bit much. Today was the worst yet. I'm going to schedule something with my GP first thing tomorrow.
I hope that you receive positive help with your symptoms. Let us know how you get on ? I will be thinking of you.
Her thought was not to worry about it for now, especially given I had some rising blood markers a little while back.
That’s okay for her to say -but she should have ordered another round of tests to see if it was a blip or continuing to rise.
You're very right. That, of course, came from the endo. I'm just going to try and reduce on my own with a dead slow taper. So far, that's been good vasculitis-wise. Just gotta do something about this hypomania. Itsa makin me crazy!
It is a very different atmosphere in the endocrinology clinic. Quite dynamic, I felt.
ADRENAL INSUFFICIENCY 
Adrenal insufficiency 
Adrenal insufficiency 
Adrenal insufficiency 
Adrenal insufficiency? 
