Wondering if anyone can offer insight to this riddle. I am currently on 2.5 mgs of prednisone and I am getting the fatigue and lack of energy that are hallmarks of low adrenal function at this time. I just had a cortisol test done and it came back at what would be considered a very good 511 nmol/L. I did not take my prednisone before the test so this wouldn't skewer the results. However, I do notice that the fatigue and tiredness comes on strong a few hours after taking the dose and by nighttime dissipates. I've been on prednisone for over 15 months, and for the first three months I suffered no side effects, then after that the insomnia, anxiety and depression hit me with a vengeance, so it seems that my body doesn't take prednisone very well. I am starting to wonder if this fatigue could be more of the same of having to do with the prednisone reaction itself and not the adrenal function, as it would be counter intuitive that I feel better at night when adrenal function should be at it's lowest, that coupled with the good cortisol reading. Could anyone offer any insight to my dilemma?
Adrenal function riddle: Wondering if anyone can... - PMRGCAuk
Adrenal function riddle
Hmm. Change your dose time to rule a coincidental time of day connection?
Yes, that could be something I could try, I never thought of that, as I always worried about taking my dose in the morning to get the adrenals to function again. Incidentally, I had thought of contacting as you seem to be the resident expert on adrenal fatigue, but now with the good cortisol test I am not sure anymore what's going on. Like I said it's been a rough journey for me, and sometimes when the fatigue is at it's worse I get quite despondent that I'll ever get my old self back. I know well enough from all the advice on this forum ( especially yours ) that my higher brain tells me that's silly thinking. Thank You.
I always had an afternoon ‘crisis’ and by evening I was fine. If I am unwell even now I get it.
I doubt a couple of days of shifting your dose a couple of hours in either direction will make much difference, especially as you are managing to put out some cortisol on your own. It is the low levels in the body around midnight that trigger the adrenal axis to work for the morning so you should be ok . If it is that closely associated with the Pred I’d expect the blahs that you get will shift accordingly.
Even with ok tests I found my fatigue wasn’t banished and could pop up at any time, especially if I had been busy or stressed. I couldn’t sustain a busy day for example.
If it was a Pred side effect it is odd that it was like this all the way down before.
'especially if I had been busy or stressed'
I've just had my daughter and family (two teenage boys) from Switzerland to stay. I was busy before their arrival and of course during the time they were with us, but I had no really severe fatigue. I attacked all the washing/ironing the day after they left and by the following day I was completely flat, unable to cope with anything. It has slowly improved but I just want to emphasise SnazzyD's point about stress etc.
That would do it!
Totally agree with SnazzyD 😊
Hi micpenn222! So sorry you are having a rough ride. Apart from all the marvellous advice you get from this forum, I think a lot of us get times of anxiety and depression . I have gone through the most ridiculous days thinking the most irrational ideas, too terrified to go into the garden in case someone sees me, better not go out in the car in case it breaks down etc. I am not the same person I was 3 years ago. Absolutely potty! Then when I was down to 2 mgs it all disappeared . Brain fog gone. . Energy came back. I realise I am not clear of PMR , taking tapering very very slowly, but the side effects at this low level can only be minimal. Keep strong, rant whenever you want to, we are all listening.
It’s a tricky one and an issue that frustrated the hell out of me after stopping Pred in Aug 2020, having already been under 1mg for a year. For me, I think adrenal issues and physical rehab were different things. Adrenal mishaps occurred when I had something unusual to contend with like sustained physical effort, pain or emotional upset. This was even when on a daily basis I was fine. I won’t bore you with the details but the resulting collapse was obvious and Pred gave relief within hours.
Physical rubbishness and inability to even get fit enough to set foot in a gym drove me nuts. It was as if my muscles went into micro damage mode every time I did something that required smaller muscles to work. My pelvic floor and hips and lower back were in a feeble state. Big muscles were ok. It wasn’t until April this year, some 2.5 years later, some clouds lifted and I felt stronger in a modest but profound way. I am still getting payback if I challenge small muscles but I’m not crippled with pain and exhaustion. As with every big health event I’ve ever had it has been years to get anywhere, never the same, but feeling I was much better. 5 years is usual. The current GCA/Pred recovery has been complicated by Covid x4 (twice bad and monumental family stress. So the recovery picture I have gives no certainty regards what might have been without those. By my previous history I’ve got another 2 years of improvement to come which is quite nice. The trouble is, to see that as quite nice, one has to get rid of expectations. Easy 😏
Thanks to all who replied to my post, it helps a lot to hear from people in a similar situation. It could be that even with good cortisol readings the whole HPA axis needs a lot of time to get back into balance; especially seeing that I had such a rough time with pred.
Cortisol really is just one bit of a massive picture - what your ACTH is doing is at the bottom of the pile, resembles a Jenga tower ...
I get reactions to all sorts of things, inclluding some brands of steroids. Sometimes I get a sudden overwhelming drowsiness. It is probably mast cell reactions in my case. Try changing brand of steroid. I can't have Accord brand or anything coated
Just chipping in here. A lifetime of being resilient and 'invincible' i am currently constantly anxious about weight, health, fitness, life expectancy, hormones, what hidden sudden death is waiting to hit me. I am 67 and dont think that these things shoukd be dominating my life just yet but cant decide what is the real and necessary worry and recognition that i need to change the life i have led for the last 30 years, declutter, downsize, move, give up work, projects, responsibilities etc. In other words what is real and what is AI induced worry? I am hovering around 3.5/4mg and partially working adrenals, functioning but not feeling healthy. Real worry is that i am also responsible for my learning disabled daughter now 46, so far healthy but also getting older. I try not to let these thoughts preoccupy me but is it just a side effect of getting older? So much has changed post 2020 (Covid and my year of diagnosis). It was a big year for many
I think a bit is getting older and being far too sensible to ignore such concerns but your pred dose and poor adrenal function will inevitably add to it.
Yes and added to by the guilt attached to actually not having the wherewithal to address these things adequately. Low energy and low motivation is not a good recipe for life changes. Plus i like things the way they are PMR excepted! So denial and head in the sand play a part
Tell me about it!!! Counselling? There are things I haven't the wherewithal to address - so I am going a different way and chosen something I dreamt of doing and am in the process of fulfilling! Maybe it is running away but I WILL do it!
@PMRpro that sounds like a good approach. I suspect camper van is in the mix? My issue is somehow providing for my daughter when I am no longer here to help her out and no family members really suitable to take on that role. But I have a list of legal stuff which is on my guilty list which I must get my head around. Counselling? I think they will only tell me what I already tell myself - being the wise woman of the east that I am - mainly - just b*****y get on a do it! Anyway, I am booked on a MenCap Trust making seminar next week so hopefully that will break the next barrier. And whilst I am at it, I will try to break my procrastination habit! Right now
It is!! I managed to stop procrastinating on that. UK tax is next - oh dread ...
My neighbour has a similar problem - she is now 80, her husband 85 and her severely Downs daughter is about 40 and has been totally spoiled all her life so living in a care facility of some sort will be difficult, She has a heart condition which even only a few years later would have been dealt with surgically but then they were left, not expected to survive. That she has is a testament to her mother BUT in doing so mum has ostracised family and neighbours. And you can tell it is on her mind.
Yes, my daughter has grown up to live independently without being institutionalised but with me as backup support. It is a subtle art. She has exceeded all expectations and is a fantastic and resilient woman. She manages by sticking to routines and what she knows, sometimes to my frustration. She lives nearby and now has a hearing support dog which she is very much enjoying. She is generally healthy too but she also has had three seizures, two about 5 years ago and one on Monday just gone, because there was a hitch in her medication. She is on a low dose and even the neurologist didn't know if she really needed it but said stay on as it is such a low dose it won't do any harm. Three or four days off it due to a hitch and she fell over like a tree. Shocking for me as I wasn't with her when the last two happened and I thought they were in the past so now a new worry yet again. Thankfully she seems back to normal now and fingers crossed will stay that way but as she doesn't have, and doesn't want a partner, she is dependent on me for support when things go a bit awry. And it does make you realise how bad our systems are as, for anyone a bit vulnerable or with cognitive difficulties they are by and large impossible to navigate. It is definitely on my mind. The rest I can think 'what will be will be', this particular thing doesn't fit that bill but has aways been abstract. Now it is coming into focus!
That's great. And shows how important it is there are NO hitches in medication supply.
Never mind the vulnerable - I am internet savvy bit the transfer of everything to digital platforms has me in a spin. The local rheuma charity which facilitates the local aquafit classes has just informed us that membership, registering and payment for classes will now require setting up a page online. They have sent a "How to" mailing but despite being fluent in German I find it scary! Most of the class I go to are older than me - how many will cope with it? They say "someone in your family will help" - no, don't have a handy grandchild ...
Not what you're looking for?
You may also like...
Tests for adrenal function
Deathly fatigue but not adrenal function
Worry of Adrenal function
Adrenal function results query
Adrenal function recovery yay!
Adrenal function
low dosage pred with functioning adrenal
Adrenal function at the lower doses of pred
