Short synacthen test

My test results are 250nmol/l prior to receiving the serum then 469 nmol/L then 547 nmol/L The rheumatologist wrote saying the results are satisfactory but will not discuss the test with me. I am down to 1 1/2 mil pred per day but feel very tired, my muscles and joints are painful. Do you think that this is adrenal insufficiency? After 5 years the rhuemy says I can't possibly have PMR. Its osteo arthritis apparently. What do others think?

[DorsetLady PMRGCAuk volunteer]

All symptoms of a/i - and even when you are off Pred it can taken anything between 6-22 months for your adrenals to be back to full function.

… as for it not possibly being PMR, your Rheumy may think that, but he cannot know for sure.

[Hidden in reply to DorsetLady]

Thanks for your reply, I'll stick it out then but it sure does hurt

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

As PMRpro says it could be PMR and you may need a little extra Pred -might be worth trying just a small increase -say 1mg or even 0.5mg

[PMRpro Ambassador]

Of course you can have PMR after 5 years - I have it after 18 years! And it certainly isn't OA since that has been looked for and there is no sign of it except in my lower spine. Refer him to Prof Sarah Mackie in Leeds - she waxes lyrical about the 2 year PMR myth.

Your synacthen test is an acceptable result at this stage. The basal cortisol is on the low side of the normal range ( 140 to 690 nmol/L) and the response is there. The first post-synacthen result is above 420 nmol/L is an adequate adrenal response. The peak should be above 500 - it was, It shows you don't have adrenal insufficiency. What is doesn't show is whether everything else involved is working properly in sync. It isn't just the adrenals - the whole thing involves the HPA axis, the hypothalamus, pituitary and adrenals and their related hormones,

You are still on 1.5mg pred, in some people that is enough to suppress cortisol to some extent and it can take up to a year after stopping pred altogether for the HPA axis to settle down to work properly. You are still in that stage.

And I'd suspect you are maybe just a bit low on pred to manage the PMR properly - whatever your rheumy thinks.

[Hidden in reply to PMRpro]

Thanks for that. I've found usually explaining to medics about the 2 year myth is met with blank looks. One Rhuemy wrote to my doctor saying I was a reader of the Internet, meant disparagingly methinks.

[PMRpro Ambassador in reply to Hidden]

No doubt.

[Suffererc in reply to Hidden]

’the blank look syndrome’. Rheumatologists seem to have that when dealing with PMR

[Suffererc in reply to Hidden]

well he should think why we have to use the internet. Been abandoned by them and their disbelief 🫢

[PMRpro Ambassador in reply to Suffererc]

They should also remember there are a lot of doctors who use it too to access scientific publications - just as I do! And you COULD do the same by going to the local library ...

[Suffererc]

I am also on 1.5 going on 1 but struggling. My muscles ache and feel like they are seizing up. Am shortly to have my gall bladder removed (non functioning) and the consultant told me to tweak the steroids . He said his mum suffers PMR 14 years and tweaks as and when.

😊

[PMRpro Ambassador in reply to Suffererc]

YOu need to be going up a bit if you have muscle pain - not enough to control the PMR.