Synacthen test: Hi all. It's been some time since I... - PMRGCAuk

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Synacthen test

annie_marie profile image
11 Replies

Hi all. It's been some time since I last posted but I have a question.

I've had pmr & ? gca for nearly 7 years now, with fluctuating pred doses depending on flares etc. Currently on 5mg prednisolone. I had full blown adrenal crisis in September, where I was unconscious for approx 5 hours and no control over bodily functions !!!!! Very messy! The paramedics saved my life by giving me cortisol Injection.

My question is, I've been told to stop taking prednisolone 48 hours before the test.

I'm concerned that not having any pred will push me back into adrenal crisis again, which, obviously I'm very keen to avoid.

Does anyone have any knowledge or experience with this test.? And any advice would be very helpful.

Thank you.

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annie_marie
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11 Replies
SheffieldJane profile image
SheffieldJane

You obviously need to contact the people conducting this test about this event in your medical background. I only had to stop Pred for 24 hours, my test was early in the morning and I took my dose later, straight after the test was completed.

jinasc profile image
jinasc

I did not have to stop my pred at all. Mind I was down to 2mg at the time. You need to check with your Endocrinologist.

I was much the same as Jane, stopped the day before & Test was over by 10am so l took them & didn’t notice.

As Jane says you need to contact the Team arranging this for you, they may compromise & go 36hours rather than 48hours.

SnazzyD profile image
SnazzyD

I’ve had 2 and on both occasions I was told to miss my morning dose but bring it to take as soon as my final blood was taken.

PMRpro profile image
PMRproAmbassador

I'd be reticent too - but usually it is done with 24 hours without pred - i.e. you take your morning dose as usual and have the test immediately before the next day's dose so you aren't really doing anything different to use.

Definitely something to flag up and possibly ask to be admitted for the second day before the test itself.

annie_marie profile image
annie_marie in reply to PMRpro

Thank you for all your useful and helpful comments.

Hellyowl profile image
Hellyowl

Mine was 24 hours and I took my pred to hospital and took it in the cafe after the test

Orpheus82 profile image
Orpheus82

I had one last week. I had to stop my pred (3mg) five days before and replace it with hydrocortisone (10mg spread over 3 doses). Then nothing at all the day before or on the day of the test until the last lot of blood was taken then I could resume my pred. I was absolutely fine and actually felt better on the HC! I understand your concerns entirely as I have had an adrenal crisis following surgery and it really isn’t pleasant!

annie_marie profile image
annie_marie in reply to Orpheus82

Thank you very much for your reply. I was very pleased to hear from someone who also has had an adrenal crisis. As you say, not a good experience and not one I want again if I can possibly avoid it. Thanks for the info, I now feel better informed to go back to the medical team. Just one more question if you dont mind, did your hands, feet, arms & legs all get paralysed for a few hours? I couldn't move at all for about 24 hours after the incident, they went claw like. It took a lot longer to get my bladder under control!

Orpheus82 profile image
Orpheus82 in reply to annie_marie

No loss of limb function but incredibly dry mouth and uncontrollable shivering. Fortunately I was already in hospital and on ITU when it happened so they were quick to push in some hydrocortisone. My blood pressure was in my boots at 40/20!! Remarkably I remained conscious throughout.

tangocharlie profile image
tangocharlie

I was switched to Hydrocortisone to have my synacthen test and then stayed on HC for a few months. I'd explain your past history and ask the experts in the endo clinic.

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