Synacthen Test looming in a moment...quick query

[Artnmusiclover]

Morning all, I've been missing this forum due to events taking a turn for the worst. I'm at the lowest ever dose 5mg pred. Not been feeling well since January, loss of appetite, occasional vomiting, the worst insomnia and even more fatigued. Upper endoscopy showed 'sliding hernia' (gp's suggestion). Deteriorated so I rang rheumy nurse who told me I'm in ' impending adrenal crisis'. Advice given-stick at 5, rest up and if get worse go to hospital. Advice followed. 3 days later (Sunday), found on on bathroom floor by daughter out cold, shivering, clammy, vomiting, and diarrhea . Foolishly thought a bit of bed rest would do the trick so, after quite a while I eventually settled and was cared for by my wonderful girls. However reality set in and I went to gp, who promptly sent me to hospital. That was Wednesday, I'm still here and about to have the synacthen test. The doctor suspects 'Adissonion crisis'. Pred was abolished with immediate effect and Im being given IV hydrocortisone. My query is as I have been at 5mg since June (January had tapered to 5.5) is this likely to affect results in terms of reliability? I apologise in advance as I know this has probably been discussed elsewhere previously but I'm sat in my chair waiting for doc and have not been able to scour for info...thank you for the support 💐

[123-go]

Thank goodness for your GP! I won’t say much about the rheumy nurse except that in my opinion she needs to brush up on procedure for dealing with likely adrenal crisis.

Hydrocortisone -as I understand- is the go to treatment for adrenal crisis and you are now in good hands and should, I believe, return to prednisolone after your condition has stabilised. Others more experienced and knowledgable will comment on this and your concerns re the ACTH test.

I would advise anyone having the symptoms you describe to seek medical advice sooner rather than later. I do hope you you will be feeling better very soon. 🙂

[Artnmusiclover in reply to 123-go]

Thank you! Very disappointed with the nurse ...and yes I will for sure...just been told its Synacthen test ...scouring other posts now 💐

[123-go in reply to Artnmusiclover]

Great! Becoming familiar with the intricacies of ones condition is really beneficial in terms of feeling involved in and having some control. Take your time.

[Artnmusiclover in reply to 123-go]

Thank you 💐

[Artnmusiclover]

Updated...just been told its Synacthen not acth 🙄 confused!!

[SnazzyD in reply to Artnmusiclover]

Synacthen is a synthetic ACTH

[Artnmusiclover in reply to SnazzyD]

Thank you...yes she's just told me 😊

[PMRpro Ambassador]

I don't think the 5mg pred up to now is what matters - what they are looking at is whether you have any response now. And it sounds fairly clear that 5mg a day pred isn't acting as the replacement therapy for cortisol as it should.

It is all very well them banishing the pred - but you do have a medical condition for which you need pred management. The trouble is, endos only see endo problems, rheumies only tend to see rheumy problems. HC isn't going to manage the PMR well. it rarely does.

The rheumy nurse was absolutely correct in HER diagnosis - just got it slightly wrong on the management, she wasn't emphatic enough! 5mg was obviously not enough, staying there was not a good idea. But you didn't do as you were told did you? You should have used 999 on Sunday when you were found collapsed - by that stage bed rest wasn't the answer. And had you posted on here on Sunday - that is what we would have told you to do.

[Artnmusiclover in reply to PMRpro]

I can't like this enough!...the doc has been and said its probably inconclusive anyway as I'd had high IV hydrocortisone 🙄....and she wants me to go to 12mg of pred today with a view to going back to 6mg when feeling settled in a few days (thoughts please)...its a shame endos and rheumys can't get their heads together (I have a small bit of pituitary left after removal of a tumour in 1988) ...my rheumy has never mentioned that...but knows...I know you're right about getting to hospital and it was totally stupid (though couldn't help thinking if my brother is having heart attack and was told it could be approx 11 hours for an ambulance I wouldn't have had much luck) that said I could have got a taxi and will not be trying to rectify this as I would a flare! I certainly know the difference now 😖 thanks for advice 💐

[PMRpro Ambassador in reply to Artnmusiclover]

I was thinking that when I wrote my reply but forgot to say it! Once they pumped steroids into you they were making investigation now pointless.

They are suggesting what I would have suggested on Sunday to be honest - Sick Day Rules to make you feel better and SAFE and then regroup. If you don't have much pituitary I would have thought you were a prime candidate for low cortisol anyway but I'm not an endo,

The situation with ambos varies greatly from place to place - my paramedic friend in Yorkshire did an overtime shift last weekend (to keep her hand in now she's admin) and they never turned a wheel! Sat on station the entire day - would have welcomed being sent to you to a "proper" job! Where do you live?

[Artnmusiclover in reply to PMRpro]

Absolutely! That would make sense! The doc has suggested before results putting me on 12mg then in a few days going back to 6mg? ....I thought but then what? If it is my pituitary am I going to be told by rheumy to continue tapering until I end up in crisis again??? I've requested she comes back to see me today 🙄 thoughts again please lol

[PMRpro Ambassador in reply to Artnmusiclover]

Yes, I think you need to get the endo onside and the state of your pituitary function investigated, And if it is lacking - and I suspect it is - then the rheumy must be appraised of the situation and that you should just stick at 6mg, You need the rescue stuff for home too as 6mg probably isn't enough in the case of a severe traumatic event of any sort when you struggled with just day to day.

Are they keeping you over the weekend?

[Artnmusiclover in reply to PMRpro]

Yes.. unfortunately for me I choose my hospital stay when consultants are striking...but think they're back tomorrow. Doc is coming later, hopefully...thanks again 💐

[PMRpro Ambassador in reply to Artnmusiclover]

They were there last Sunday/Monday

[Artnmusiclover in reply to PMRpro]

🙈....typical! 🥴

[Artnmusiclover in reply to PMRpro]

Forgot to say I live in Preston Lancashire 😊

[PMRpro Ambassador in reply to Artnmusiclover]

So does my husband's cousin ...

[Artnmusiclover in reply to PMRpro]

Really...what's their name...been here all my life 😊

[Merryfield]

Scary set of circumstances. Hope all gets straightened out and there’s no recurrence of the blackout.

[Suffolklady]

I have not been on here much and completely missed your post. So sorry to hear that you have been so unwell I do hope that you are feeling a bit better now. X