I’ve received notification from the Consultant Rheumatologist that “it shows a slightly suboptimal response with a post synacthen level of 432. Normally the cut off is 450. It is borderline “
She then tells me she is happy for me to taper from 5mg to 4mg for a month and taper again to 3mg when she will order a repeat test.
Just wondering fellow PMRs if this is a common form of diagnosis/treatment?
Thanks again for your valuable feedback
X
Sounds good to me - that isn't too far off normal and you are still on 5mg. Not sure I would favour tapering 1mg for 2 consecutive months, I'd rather go slower but you know we favour slow here ...
As the pred dose goes down, your adrenal function should improve - and you are on enough pred to function anyway. Just see how the fatigue develops - hopefully it won't ...
thank you once again
I had much the same. I was tested at 4mg and the result wasn’t very special and I was told to keep challenging the system to get going by reducing. The idea is to keep having low levels to trigger the brain to do something about it. They suggested 1mg per month but I declined stating that I was already having a rough time with low cortisol symptoms. I did 0.5mg per 8-14 weeks depending on how I felt. Some reductions were better than others. By 1.5mg I was feeling much better and the next Synacthen test reflected that. Only you can tell how it affects you really because everyone is different.
very true and I must admit I would hate to get my original symptoms back 🤞
Suboptimal must be what all Endo's say.....My reading 10 months ago was 215, she said suboptimal, needs to be at least 450....having cortisol test at GP surgery onTuesday, if it hasn't risen much.....I'm to have the longer hospital test....synacthan I think it's called.
that seems very low but the synacthen test should be Møre accurate
Still only tells you that the adrenals are capable of producing cortisol when given a chemical kick - doesn;t mean that they are doing so on a regular basis - nor whether the pituitary is producing ACTH naturally itself.
thank you for helping me to understand where I’m at !
To add to PMRPro’s, even when my adrenals were functioning on a normal daily basis, I have been caught out by a crisis a few times after a spell of unusual acute physical or emotional distress. The last one was during Covid last year 2 years after stopping Pred. The hydrocortisone IV was a wonder drug. I never go a long way from home without some Pred in my bag, even nearly 3 years after Pred ended.
thanks for letting me know about your experience. Does hydrocortisone IV have any nasty side effects?
It was one dose and I felt wonderful (apart from the Covid) very quickly. It was a one off rescue dose because I looked like I was having an adrenal crisis.
Synacthen test today!
Update on last blood test
Hydroxychloroquine and PMR
synacthen test result
Short Synacthen test
