Why on Earth is my cortisol not restarting? A week on 3.5mg all in the morning and feeling terrible- aching all over and exhausted. Must I spend months like this waiting for ........?
Today's SST (short synacthen test) results are cortisol
398 baseline
528 after 30min
546 after 60min
Normal cortisol response
- so absolutely fine!!!!! Why is my normal cortisol response not allowing me to feel like a human being?
Maybe not long enough for body to adjust as yet....I have been on 7 mg for several weeks now and feeling awful and weird these last few days...fatigue, dizziness, balance problems, lack of appetite, losing weight....waiting for cortisol test results.....don't think there are quick answers to this......tortoise and hare!....
You may not get very good results because 7mg can be enough to suppress the adrenal glands a bit. So don’t despair. This is why they don’t normally do Synacthen tests until you are below 5mg at least.
It could be that the dose isn't quite enough to manage the PMR of course. Both are factors ...
I had months and months of feeling rubbish. Mornings and 5pm were the worst. The test tells you your adrenal glands can work in principle but all day every day is another matter. My tests were ok but not special at 4mg and pretty good at 1.5mg. Getting up in the mornings or having enough oomph all day was another matter. Sometimes I think the feedback mechanism doesn’t always work. The Synacthen test is mimicking the feedback system having already decided it’s time for action and the brain sending out Adrenocorticotrophic Hormone to the adrenal glands. It doesn’t tell you if your body is any good at spotting the shortfall and then doing something about it such that the brain sends out ACTH. There may be other parts that influence the process we don’t know about.
What a complicated business it all is!...How long did it take you from 4 mg to 1.5mg?
Damn! Much more complicated. Looks as if I must stick at 8mg+ daily for a while to have a break from the symptoms the back on the slow reduction ...but now all in the morning in the hope that I retrain my cortisol engine to work.
bear in mind that if you go back up to 8mg plus you go back to switching the adrenals off again. 0.5mg drops are also much better and introducing the new dose in of course. IF your PMR is not quiet then it’s worth it but if it was me I’d go back to something less drastic like 5mg to see what that does. Are you convinced your PMR is ok?
I have the same problem, had to go back up, am now down to 8mg and staying there for a while before I try and taper again. Gp just referred me to an endocrinologist, going private as I would like to see one before I retire in 5 years lol.
So how does one decide if it is a PMR flare or adrenal lack of recovery when attempting to taper?
I would like to know this also
That is the conundrum! It is always a balance and probably the best way to work it out is that the adrenal-related fatigue and other problems SHOULD improve slowly as long as you don't go back up on the dose. PMR-related pain is likely to increase if you remain at a dose that is slightly too low for the inflammation - and if you are a person for whom the markers work, they may well rise too.
Each step down must be as small as possible and you must be prepared to put up with some fatigue in order to persuade the adrenal function to wake up. It can be hard - no getting away from it.
"some fatigue"?.......creaking along again, waiting for it all to settle down without pain- actually have decided to give up on reductions and have a week off on a higher dose....9-10mg to see if I can be pain-free for a little while.
I keep doing the same. Gp not too pleased with me!
me too. I am so confused and despairing. Each time I've take a regular, particular dose of the man made version of cortisol, my body gets used to having that given to it and sits back and like an addict, demands more. How can one taper when the body wants more, more, more depo-medrone or prednisolone?
I had lots of trouble and went back up but only to five, four was easy somehow then 3 was impossible so (thanks Mrs Nails) I tried 3.5 bad but perseverance can win. Then alternate days of 3 and 3.5. Tried to ‘kill’ my husband, we never row much but I was just beside myself with anger and upset! Just like PMT when I was younger! Yesterday 3mg was fine, today, who knows, trying 3 again. Run out of energy about 5pm and none yet this morning. Just can’t imagine getting lower, but it will happen! Good luck!
I’m the same. You are not alone
Nice to know, thanks! S x
Maybe you're like me, in that I always wanted to be a doctor and just didn't have the PATIENCE! Now however many years later and after three successfull periods of waiting for my adrenals to play ball, I just go in confidence with the flow, and time wins out!
If you think about it, we are told to carry the Blue Steroid Warning Card for at least one year after stopping pred. This is because it can and does take up to a year for those adrenal glands of ours to get up to speed.
As I found out after 5 years with GCA, I still had to pace myself.
If I did too much - fatigue, not as devasting - happened.
Fight or Flight responses used to make me flop and fatigue came back all guns blazing as although they were functioning they were still not 100%.
Finally as we all have aged during this journey, which we never wanted to undertake, things take a bit longer to correct themselves.
Probably what I have written sounds useless but that was my experience.
Sounds good to me
Not useless at all and your ten ton truck is still roaming freely and indiscriminately!
In the recent presentation by Dr Saravanan “Life beyond steroids” he suggested that in some people the natural cortisol production never recovers and that a 5mg or lower dose of pred might be required for ever!
I had a test when I was taking 4.5mg and feeing awful (not PMR pain more just ‘rotten’). My test also came back as all fine!!! I was a bit grumpy as had assumed it would show nice and clearly that my adrenals weren’t kicking in!
Six weeks on and I’ve managed to get to 3mg (just moved to it a week ago and will stay here a good long while!) and I have to say that, on the whole, what I was calling adrenal symptoms have settled a lot and it just rears up when I’ve done too much or am overtired (can be tricky to tell what’s what as I also have ME!).
I suppose I’m just encouraging you not to give up hope of dropping lower. One thing that’s predictable about PMR is that it’s unpredictable!!!!
I relate to all the above. So complicated plod on and hope to get things right. Rather depressing and difficult for the other half. Doctor gp finds it difficult too. They don’t really know. They don’t research like us obviously. Have yet to watch webinar life after steroids
Just found that .... vimeo.com/560986818
Those are good results. Have patience, your body will catch up. Pace your activities and be gentle with yourself. You will eventually be just fine.
Damn....I am booked to go off to the country for a day of field sports!
They are very similar to my results and I was told that they had normalised. However, I am utterly exhausted having had to increase Pred upon GCA diagnosis, so who knows now. I can’t get down to below 5 mgs yet in spite of Tocilizumab. At that stage the Endocrinologist wants to see me again. It is all very complicated.
Also utterly exhausted here on 5mg....and planning to reduce by 1mg/ week just to see what will happen with Rheumatologist AND Endocrinologist in mid- August.
Thank you, Hidden, for the wiki link. Unable to comprehend today due to dense brain fog...maybe later or tmrw? I do now have an appointment to be seen by an Endocrinologist in mid- August so fingers crossed.
I feel a few good things~!
I feel fantastic but ...
Feel good but CRP still elevated - rheum says increase pred
Rotator Cuff Tendons 3 out of 4 have all but separated. Have been told I need a shoulder replacement. 
How long did it take for your ACTH to come back? 
