I'm fortunate in having a good GP who is very concerned about my total exhaustion and inability to cope with everyday life. She wrote to my rheumy who authorised a 9am cortisol test. It came back as 104 and he has arranged a short synacthen test in two months time. I've asked the rheumatology dept for help/advice with dealing with the extreme mental and physical fatigue while waiting for the test ( half an hour of minor activity eg. making a cup of tea and a sandwich) requires two hours lying down before any recovery. They've suggested asking my GP to arrange "talking therapy" and an appointment with a physiotherapist. My GP doesn't think much of that. Any comments on my cortisol level? Or suggestions to help with the fatigue, although I think I've heard them all .....
Cortisol issues : I'm fortunate in having a good GP... - PMRGCAuk
Cortisol issues
hi,
No suggestions other than to refer you back to your previous post.. where others gave some advice including requesting a referral to an endocrinologist and a link I posted re adrenals ….
What do you think about my cortisol result?
Well it’s is low, but as you are still on Pred -although not sure exactly what dose - it’s going to be, so not sure whether checking it again will prove a lot until you get much lower to around 3-4mg.
Agree with PMRpro, you shouldn’t be feeling as wiped out as you are, so perhaps GP should be doing a bit more investigation.
I agree, GP sounds very clued up… as for “talking therapy” for seemingly irrational physical exhaustion is, frankly, on a scale between irritating and insulting. It’s absolutely steroid related, and although I still feel like a newcomer and amateur on this site, after nearly 4 years with GCA, up and down the Prednisolone snakes and ladders game, that much I do know.
I think I like your GP. Exactly WHAT "talking therapy" will achieve in the face of an actual physiological deficiency (of cortisol) is a mystery to me! And physio is likely to make things worse not better - I'd prefer to devote what energy I had to making a cup of tea than to a few physio exercises.
But you are still on a dose of pred that is going to suppress production of cortisol - the result was to be expected and a synacthen test is unlikely to change that in the space of 2 months. And an endocrinologist can't do anything about it either except authorise you staying on pred - or switching you to hydrocortisone - as a replacement therapy for adrenal insufficiency and in the hope that, with hydrocortisone at least, adrenal function is more likely to return.
In the meantime, maybe your GP should be checking that there is nothing else that is contributing to the fatigue because with 100 nmol/L cortisol and 6mg pred you shouldn't really feel as bad as that in the morning.
Did you feel this bad before the heavy cold? WAS it "just" a cold or could it have been Covid? If you are worse now it may be a combination of adrenal insufficiency and post viral fatigue - which in itself can be absolutely flooring.
Thank you, yes there is one GP in the practice who is great. I actually had two 9am tests due to not receiving the letter telling me not to take the pred before the test. With pred it was 207, without it was 104. I'm also having regular full blood tests and as far as I know they haven't shown up any problems.
That is exactly as you would expect - there is a low cross-reactivity of prednisolone in the cortisol assay so the result is a falsely elevated figure.
But how does how you feel compare with BEFORE this bad cold?
Before the bad cold I already had fatigue but it was not so bad, I could manage a bit better. Before Christmas when I was on 8mg I could cope with most things but needed a 2-3 hour lying down rest in the early afternoon.
Which really only confirms what they know - adrenal insufficiency so I think there probably isn't a lot of point doing a synacthen test but at least then they have the figures.
But if you are this bad on 10mg - it is almost certainly a post-viral effect which can last a while and may recover. But ME/CFS or - if it was unrecognised Covid you had - due to the Covid is also a possibility. And not a lot they can do really. Though the idea of the physio is very silly if it is that since graded exercises have been stopped because they are no considered to be detrimental in CFS.
Well I can't say that's made me feel any better....... ME/CFS on top of GCA
Well no - and I appreciate that. But the point I wanted to make was that the idea of physio was a bit inappropriate, And that post viral fatigue is very common and takes more than a few weeks to recover from even when it isn't CFS. I've had ME, way back when it was still called yuppy flu, and I did recover after a few months.
what dose of pred are you on right now?
so a bit early for these tests really
Hi, I have secondary adrenal insufficiency due to 8+ years on pred. It does look like you have it too from those results. For inflammation pred lasts 12-36 hrs but for cortisol only 6-8 hrs so you might do better if you split the 10mg you're on. You can try morning and afternoon to start off with, so maybe 7.5 in the morning (at least an hour before you get out of bed or you're running on empty) and 2.5mg 2-3pm. This will help the fatigue in the afternoon. Or you could split 50/50. Up to you. My pred only lasts 6 hrs so I have to split my 10mg 4x daily. If 2x daily doesn't work then you could try a small bedtime dose, say 1mg, to help set you up for the morning.
Interesting you are on 10mg for secondary insufficiency - many doctors claim that 5mg is enough! I think 7mg is more on the mark but 10mg would be nice,
What is secondary insufficiency please Pro?
Adrenal insufficiency that is due to long term use of pred which has suppressed production of cortisol and then it hasn't recovered with lower/no pred.
I'm on 10mg atm as Ive just got over a flare of colitis so I'm tapering. I've been trying to get to 7.5mg for months but life gets in the way lol. I'm covering sai, ulcerative colitis, fibromyalgia and osteoarthritis so my gastro thinks realistically 7.5mg will cover all conditions with a 5mg pred suppository 2 or 3 times a week for the colitis. My endo wants me to attempt 4mg but she thinks my adrenals have most probably atrophied after 8+ years on pred. I can't have any other treatment for my uc as I have a blood thinning disorder (von willebrand) and dysfunctional platelets and most treatments run the risk of me hemorrhaging.
i like the sound of your gstro far better than the endo!!! We have had people on the forum get off pred OK after as much as 10 years on pred so the adrenal atrophy thing does vary a lot. Do you find the pred helps the fibromyalgia symptoms? If so - is it REALLY fibro?
I believe the pred does help with the fibro for sure... But as you say is it really fibro? Either way I'm in much less pain with spreading my doses 4x over the 24 hours. Feeling great on 10mg atm so making the most of it as I've just started pilates and walking. I was diagnosed with osteopenia in my hips with my last dexa scan a few weeks ago after many high doses of pred after covid twice in 3 months 2 years ago. Not devastating results but enough to jolt me into action. I will start the slow taper again once fully stable. As for my endo and gastro, yes my gastro is far more realistic and he knows I know my own body. My endo is typical text book, hates me splitting my doses. Wants me at 4mg for testing. I'll try but I won't make a big deal of it. I need a quality of life!
I was reading this week that the drop to recommended 5mg for SAI has led to quite an increase in adrenal crisis as patients aren’t being mindful enough to increase when necessary. We’re still struggling with mum at 10mg so the endo just laughs and says it can’t be …..I’ve phoned a few organisations …no studies or anything on adrenal insufficiency and patients who lack capacity to self manage….
I can imagine. This terror of pred is probably killing people.
Have you got a link for that?
endocrinology.org/endocrino...
I can’t find what I was looking at - but this one is similar, but talking about those on hydrocortisone rather than pred.
addisonsdisease.org.uk/newl...
I find this confusing because it only actually says under 5mg go to 10mg minimum BUT I think it means double your daily dose even at 10mg to 20mg because the graphic says "Prednisolone users: increase to 15 or 20mg"
I know I am biased but
sciencedirect.com/science/a...
implies to me that while it says "even patients on less than 5mg pred can be immunosuppressed" that then applies to ALL patients on exogenous pred even at higher doses but they omit to point out that patients on more, e.g. 10mg, are also suppressed and in the event of a stress event of ANY sort will be unable to respond to the need for more cortisol. But my experience - like yours I think? - is that it is assumed if a patient is on 10mg that is the same as a patient who has doubled their lower dose. Do you get what Ilm trying to say?
I wonder if contacting the addisondisease.org.uk charity would result in some clarification?
Yes I have been confused by that page too. I have looked at various hospital trust sick day rules and they vary between saying no need to increase at 10mg, 15mg or 20mg so there is no uniform dosage. I think ur right and many endo’s assume 10mg is sufficient as double the standard 5mg. What that doesn’t take into account is absorption ( I suspect mum is low on this as she had cortisol bloods come back as low when she should have been at peak time) plus also the cortisol effects run low after 6 hours - which explains why mum has problems towards the end of her dosing period.
I am on an adrenal insufficiency forum and they say that even within the endo community there is often a lack of understanding and experience with AI - such as we find with rheumatology and GCA/PMR
I did call the addisons endocrine nurse helpline and spoke to a great nurse who ‘got it’. He said what we know - that every patient is different and so individualised care plans are needed. He did have a template for one but was unable to email it 🙈🙈
Mum was IMHO tapered far too quickly from being on sick day rules for too long back to 10mg - she has had periods of anxiety and shaking on and off - growing in intensity so put back on sick day rules and they have resolved in the last 24 hrs anyway.
I haven’t even dared mention the GCA / PMR and that taper should be just 0.5mg per month for her. I’m hoping the 10mg has kept it at bay but it’s hard to tell with late stage dementia.
Tempted to write a patient experience paper one day!
"He did have a template for one but was unable to email it " - what, not even as a pdf? Or not allowed ...
I don't think you can count on the cortisol results portraying much to be honest, At 10mg, cortisol will be suppressed and there will be low or no cortisol in the assay. And to be honest - why are they so concerned about getting the pred down in a patient of her age and in the late stages of dementia? If it keeps her happier and feeling better - why aren't they taking it and running?
I think he wasn’t allowed to send it 😢 They do all seem obsessed with getting her dose down. It’s a shame - her functioning is much better on the higher doses.
The endo did suggest maybe she’s better because the higher dose treats her GCA / PMR better - but how can I assess that in her? She’s no longer mobile so can’t assess walking / stiffness. Extreme pain I guess woild be obvious - but she’s v stoic and didn’t say she was in any on original diagnoses. The GP hasn’t even mentioned rheumatology - I will remind him of that diagnosis too.
Is there anyway of seeing the cortisol levels provided by the prednisolone? Would that not be evident in the blood tests?
Thanks
"The endo did suggest maybe she’s better because the higher dose treats her GCA / PMR better"
Which is the idea after all.
No, there is some cross reaction of the pred with the assay which is why the patient isn't supposed to take pred in the 24 hours before the blood test. But the cortisol level needs expert interpretation when the patient is still on pred - and that is a given with most patients or they risk an adrenal crisis.
If you read Christian Dejaco's Treat to target paper it is fairly obvious that the patient should be treated - whatever they use - to achieve the best QOL for the patient. In your mum's case, the dose of pred is fairly immaterial because with the best will in the world she isn't going to be taking it for the next 20 years is she? They should be using the dose that produces the best level of functioning for her at the moment. The endo does seem to have a bit of a clue there. Adrenal insufficiency is a cause of a reversible dementia - so maybe part of the dementia is actually poor adrenal function which is a known thing in older patients.
Thanks Ruthie, I will try splitting the pred. Interestingly my fatigue is currently throughout the day and my best time is later in the evening.
Do you take you pred an hour before you get up? That's quite important. If you don't it's like starting a car on empty. Your body will be playing catchup all day.
I've always taken it with breakfast as I was told to take it with food. I'll try taking it earlier. For the first 18 months it worked okay (with a few ups and downs) although I did need a rest in the afternoon, but I could cope with that.
You were at a higher dose - makes a massive difference.
I haven't been on a higher dose than I am on now since August/September 2022! Once a day with breakfast always worked fine but I'm going to keep with Ruthie's plan for now...
Bear in mind though that Ruthie doesn't have PMR - your requirements for PMR management will be a bit different.
I don't have PMR either, I have GCA. Do you think splitting the pred into 3 doses will help with my fatigue? I find it strange that I usually feel less fatigued and more clear headed in the evening when I imagine that there is less pred active in my body ..... or perhaps I don't understand how it works.
Then spitting the dose into 3 is even less recommended for GCA - the underlying autoimmune disease can remain active for a very long time, right down to low doses of pred which has no effect on the disease itself but manages the inflammation it creates. All the inflammatory action happens in the early morning, just once a day, and it too can cause the flu-ey feeling. It is possible that that is wearing off by afternoon and you start to feel better. It is all very complex and the best way to manage it varies from person to person. Maybe it is even the PRED that your body is reacting to - it makes some people feel fatigued. Who knows. A lot of people say they feel better during the evening - you are by no means the only one.
It certainly is a puzzle. For the first nearly 2 years of GCA I used to wake up feeling positive and with reasonable energy levels. I could (for example) work all morning on my allotment and then rest in the afternoon. This remained the norm as I reduced the pred although each time I reached 6mg I had to increase. For the last month or so I have woken up with little energy, my brain is foggy, maybe I do have ME/post viral thing as you suggested earlier
I don't think there is any question part of it is simply due to the much lower level of pred - you were very lucky in the early stages, for most people the pred energy boost is a false friend that really isn't built on very solid foundations. But splitting the pred dose isn't necessarily the way to sort it. What was the last dose where you felt pretty good?
Last November I was on 8mg and could cope fairly well, although I needed a good long rest in the afternoon. But I'm on 10mg now and not managing so well.
Interesting - not what you'd expect unless your underlying disease is flaring. I think your doctors should be putting their thinking caps on.
As you have only been on Pred for 2 years, I do wonder [like PMRpro] whether your GCA is the issue, not adrenals...you do need to discuss with doctors.. and have you had your inflammatory markers tested lately to see if they are higher than expected?
My inflammation markers have not been above 3 since I started pred 2 years ago. They've been tested every month
Still would be considering a flare ... but see how it goes...
Mmmm- interesting autocorrect ,,,
🤦♀️
??
Have amended... PMRpro is my proof reader ...🤣😂
As DL said - but I can't delete my now redundant comment because I'm not sure what else might disappear ...
Only Sammo47’s and my direct replies …. allegedly 😳.. but who knows with HU… and it will soon be like yesterday’s newspapers so I’d wouldn’t worry….
Might help fatigue-who knows-but as PMRpro has said not really recommended for GCA even at low doses.
Thanks Dorset Lady. You think it's best to take the whole dose in one go? Not even most first thing then small post lunch top up?
I always took mine in one dose -never even considered splitting -but then my dose last 24hrs..
I realise it doesn’t for everyone - but that makes me wonder if it is actually enough in some cases.
Taking it at breakfast is no good. Our natural cortisol levels peak at 8am so you need to take it at least 6-7am depending on whether it's prednisone or prednisolone. Prednisone has to go through the liver so will take 2 hours to kick in and prednisolone doesn't so will take an hour to kick in. I'm pretty sure if you start taking your pred at least 1 hour before you actually get out of bed it will make a huge difference to your energy levels. By taking it at breakfast your body is playing catchup all day hence the fatigue. I take my pred at 5am, I set an alarm, take it (without food) and go back to sleep. I then get up at 7am and I'm good to go.
Thank you so much for your advice, I'm definitely going to try it!
Let me know how you get on, good luck!
So I've tried taking the pred at 5.30am for 6 days and there's been a little improvement, but not a lot. I will keep on with it for the moment but I am concerned about not taking it with food as I've always been told that was really important to avoid stomach problems.
Why not take it with a spoonful of yogurt or a small slice of bread or plain wafer biscuit….
Thanks, I'll try that
How much are you taking at 5.30?
7.5 mg
Ok so not too much then. It should have help tbh... How late are you taking your second dose? I actually have sai so I split my doses into 4 as I burn through pred quickly. I take 9.75mg
3.75-2.5-1-2.5
5am-11am-5pm-11pm
Because it's such a small dose I don't take it with food but then I never have.
Maybe try a 3x split and take 1mg at bedtime? Might help set you up better for the morning.
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