Hi, I have just had some blood test results come back today.
Currently on 5.5mg, but have been taking 6mg (Sat 30th..Sun, Mon, Tues) as have had lots going on, bit stressful but good stress not bad! the 0.5mg did help.
All results are ok including PV, ESR, CRP.
Also had a basal cortisol test (partially instigated by me as really struggle when reducing).
The result is Serum cortisol level 164 nmol/l.
So this is low I think? Thanks for any advice as always. 😊
Had you taken pred in the 24 hours before the blood test was taken? But it isn't out of the way for someone on over 5mg pred - there is some adrenal activity already so looks promising. Under100 would have suggested adrenal insufficiency but doesn't mean a lot when you are still on a dose that is more than enough to suppress production of cortisol.
Hello PMRpro, thanks for your reply. I hadn’t taken pred in the 24 hours before the test. And you saying adrenal activity looking promising is good to hear.
Back to 5.5mg today and will stay out for a few weeks until the next slow taper.
A query PMRpro, does being on 5.5mg mean that the pred is enough to replace cortisol that would be naturally produced? I realise no pred will have been taken 24 hours beforehand.
Yes - as that 5.5mg goes down, the amount you produce yourself should slowly rise, The system is there and working - just needs to level out, less pred, more cortisol.
Thanks so much. Your knowledge really helps my understanding of what’s happening. It all seems a bit complicated with the adrenals and I’ve been whittling about my low cortisol test results. I think you said at 131 it looks like something is starting to happen. I have a pre Synthecon test telephone appointment next week which will take place while we’re away in Portugal. Info from the hospital has arrived today.
On 5mg that is loads to suppress cortisol production so your result is not bad in that context. If they were doing nothing it would be under 100.
I’ve been on 3mg for over 7 weeks and advised to stay at this dose. I guess they’re doing a little bit. At least it’s over 100. The synthecon test will give us more info. I really must learn patience. I always want things sorted ASAP and these illnesses really don’t like that attitude!
Thanks PMRpro
Thank you so much againPMRpro, always very reassuring.❤️
Doctor also been in touch after talking with endocrinologist to say they will look again at cortisol levels at 4mg pred. And suggested splitting dose (I find I get afternoon pain breakthrough) so maybe take 3mg morning & 2.5mg lunchtime. Worth a try!
Let us know how that works for you. Always good to know when experiments work (or when they don't because someone else has probably also tried something similar and found a successful tweak).
Thank you HeronNS, I will. Best foot, or shoulder or hip forwards tomorrow!!
Hello again PMRpro, so I have returned back to 5.5mg for two days after my 6mg lift to help me through for 5 days. Yesterday afternoon I felt really off, weak, nauseous, very stiff, muzzy. Blumin awful actually! Cobbled a dinner together and went to bed at 7.15 pm.
Do I just tough it out or go back to 6mg for a few weeks and the attempt a 5.5mg (5 week) taper again?
Thanks again
If it were me I would go back if it makes that much difference and it is stopping you functioning. I couldn't live like that - but I do live alone, no-one to pick up the pieces. It may be if you wait a bit longer at 6mg, a future attempt may work. I found I was good at 7mg but after a couple of weeks at 6mg I was developing sore biceps and I was quite wobbly if I had anything official to deal with, I've gone back and forth for a few months now and finally 6mg seems OK - at least I dealt with solicitor's gubbins re a will and POA last week without any problems,
Thanks again, you are right I can’t function and I hate it. Feeling very off, and yes that wobbly feeling dealing with stuff, so tired and the horrid shoulder, neck, arms & hands stiffness is rubbish.
It’s been a busy few weeks with family stuff, I work from home and am grateful it’s productive, also take part in a big antiques market once a month which is wonderful but absolutely well & truly exhausting, so always suffer somewhat after that. The dog always disrupts my sleep..every night, plus she hasn’t been well recently and is more needy than her already needy self…more to do as my son was home for Easter, lovely but all extra, husband very busy too. And on top still trying to do the life basics of washing, cooking and cleaning…🙄
Sensible decision made, staying at 6mg till I feel I can attempt a drop. Feeling a bit more normal is all I want right now.
Simple food and the house a bit upside down is fine too.
Have a good weekend, look after yourself your advice is so appreciated 😊x
" the horrid shoulder, neck, arms & hands stiffness is rubbish."
And THAT suggests it is the PMR not being well managed IN ADDITION. No more waiting on sons - if others seem to depend on you, you need to get them doing their share. Get a cleaner - I have one for one hour a week, she is there to do the things I could but which make me worse, like vacuuming and any cleaning that needs more than a duster. And sorry needy dog, but YOU are needy yourself and YOU need to sleep undisturbed,
You are right, feel quite emotional because I know what you are saying is spot on. Others don’t always completely understand as they don’t have PMR and that is fair enough.
I needed telling PMRpro, and I have taken it on board.
Thank you so much again
I expect a report on your progress!!!!! Been there, done that - and you are doing yourself and the family no favours. Show them what I said - because they need to know. There is a DVD that explains what PMR/GCA does to us to explain to family and friends who don't "get it". It is now on YouTube in 3 parts to make it more widely accessible, Get them to watch it:
Hello PMRpro, I hope you don’t mind me picking up on this message you sent previously but I seem to be back where I was 7 months ago. I think it’s low cortisol again, possibly have also overshot the pred level of managing PMR and a bit of DOMS! Did a market at the end of July and have had some horrid sciatica from that and still do, then covid mid September. Couldn’t do my market in September as was too exhausted and in pain. Stated a slow taper to reduce from 6 to 5.5 and am now all this week at 5.5mg. Decided to take down the bean plants on Friday, not a good idea. Dog still doing awful early wake ups..4.15 this mourning and she was sick, husband let her out, I cleared up the mess. But generally I do still get up at least twice and very very early every morning for her. So that doesn’t help!
Shoulders, arms, hands, back, legs all ache/stiff and are tender and a bit more after Friday. Feel off and on nauseous and tired (cortisol?). Take cocodamol too but it only helps a bit. Supposed to have a tooth extraction tomorrow, not sure what to do about that. Have a market next Sunday which I would really like to do and do it feeling better.
Can’t function properly and I absolutely hate it! In your wise, knowledgeable & always common sense capacity, what would you suggest I do please. Thanks again to you.
"Couldn’t do my market in September as was too exhausted and in pain. Stated a slow taper to reduce from 6 to 5.5"
NEVER, ever start a taper when unwell or, even more so, in pain. You are showing all the signs of a flare because you have gone too low. FOrcing a reduction just doesn't work - you will end up taking MORE pred in the longrun and feeling awful into the bargain. Why is adding cocodamol with its potential adverse effects preferable to 1mg more pred?
The harsh truth? You need to get out of your current state of denial - you need nearer to 7mg to manage your inflammation - the adrenal side is incidental. You manage the PMR symptoms first and foremost. And really consider the things in the lifestyle commitments. You can't do it all without payback. You MUST learn to say no or find alternatives - like a gardener if your husband won't take over jobs that require strength and muscles you don't have. Both the inflammation of PMR and pred weaken them - and they will remind you of that. And at the same time you are persisting with tapering. It doesn't work.
Everyone thinks they will be different and they will "beat" PMR. PMR always wins hands down.
Thank you for your reply. I took 6mg this morning and will take 7 if you think that’s best from tomorrow onwards. Get this tooth sorted and it will one less thing on the list. I am stubborn and fiercely independent and get on with it rather than ask for help, I need to change that pronto. I really hate being unwell, but I have taken your words on board and will do as you recommend. I needed a stern telling! Thanks again so much x
I’d be inclined to use flare protocol to get through this recent blip -
healthunlocked.com/pmrgcauk...
Agree with PMRpro you need to manage your PMR - not think you can sail on through willly nilly ignoring the warning signs hoping they will go away. They won’t, and you just make life more difficult for yourself.
Doesn’t matter how stubborn, or independent you are -your PMR doesn’t give a fig! It will still go on, and on and on… if you try and fight it. Learn to accommodate it, and you will get through it much easier.
Thanks for replying DorsetLady, you are right of course. I think I probably flared in September. I have never followed the flare protocol, I know about it of course but need to have a look. All best
Worth a go -to clear out built up inflammation-and then you can restart with a clean sheet - so to speak.
Absolutely, thanks so much yet again both of you ☺️
Sorry to butt in , tomorrow I am having an 8 am cortisol, it would be 24 hrs since taking my 4.5 mgs pred . Therefore if the result is over 100 it will all be normal. Also was wondering at what level is cortisol to be in crisis . And what level is insufficient. I find all this difficult to understand
It is difficult to understand I agree. I suspect those with the invaluable knowledge will be along shortly, thank goodness for them ❤️
All the best with your test tomorrow Avadip12 x
It isn't as black and white as that. The normal range is 140-690 mmol/L. Under 100 is definitely adrenal insufficencym above 450 is definitely normal, In between is less clear and would need further testing. While you are on pred at that level it will suppress the production of cortisol overall and it takes some time to recover as the dose goes down to top the dose up to what are called physiological levels, the amount the body needs to function properly. The body doesn't care whether its corticosteroid is produced naturally or comes in a pill but it does know too much is bad for it and doesn't produce more.
Look in the FAQs under Adrenals - lots of simple explanations there.
It’s much better than my recent cortisol test, 131 at 3mg daily
cortisol test
Morning cortisol test results have arrived.
Cortisol Test
Basal cortisol test
Update on basal cortisol test
