Adrenal crisis: What would it take to bring on an... - PMRGCAuk

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Adrenal crisis

winfong profile image
16 Replies

What would it take to bring on an adrenal crisis? How many megs of pred? How many days going without? I'm sure it depends on a lot of factors, but just curious if anyone can give me some ballpark figures. Thx

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winfong profile image
winfong
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16 Replies
SnazzyD profile image
SnazzyD

If you mean when are you susceptible to adrenal crisis, it is when the Pred level is below what you need for daily life. This is about 7/8mg but some people seem to notice at 10mg or so.

I’m not sure there are any ballpark figures to say what the chances are at any given dose below 10mg because as you say there are so many factors. Thus unpredictability is makes it so difficult. I’d say at any given dose that if one is already feeling tired and weak on a good day, the chances of a crisis is greater than if one feel ok, because it would take less to push one over the edge.

Seekingasolution profile image
Seekingasolution in reply toSnazzyD

I’m down to 1 mg now so I don’t think I have any reason to worry although there are days when I can hardly wait to get a post lunch nap ! But as a matter of education , what are the symptoms of an adrenal crisis ?

TM1970 profile image
TM1970 in reply toSeekingasolution

You should have an endocrinologist that will give you’sick day’ rules. You can get them on the Addison’s website. It’s classed as secondary Addison’s, good luck

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTM1970

Have messaged you

SnazzyD profile image
SnazzyD in reply toSeekingasolution

Have a read of this from the FAQ’s.

healthunlocked.com/pmrgcauk...

It’s great you are not struggling on a day to day basis. What you need to be ready for is an unusual event that requires your body to have a big response and suddenly you find your adrenal glands that seemed to be ok on a good day, can’t put out enough cortisol. A sudden crisis can make you come over completely weak and wobbly, a feeling of something being very wrong comes over you. You can also get a feeling of shakiness and sweatiness like low blood sugar. You can get nausea, abdominal cramps and diarrhoea like a stomach bug. Your blood pressure can drop when you try to stand and you feel faint. A slow crisis can have these symptoms that creep up over days or a few weeks but initially not enough to stop you in your tracks. It either keeps going until you collapse or your adrenal glands get on top of it, or you muddle along feeling rubbish. During this time you can feel emotional, anxious and unable to get up in the mornings or be unable to sustain the day without a decent sleep. I did the latter for months to a greater or lesser degree. However, one small thing like going out or having an upset can tip you over the edge.

The trouble is that these symptoms can all be due to a virus or other malady. I found adrenal function was highly variable before it got onto an even keel. Basically, keep Pred with you if you go out and wear a medical alert in case of an accident for a least a year after you stop Pred.

Seekingasolution profile image
Seekingasolution in reply toSnazzyD

Thanks Snazzy. I was thinking that was just how I felt when I had Covid before Christmas - but that was just probably Covid. I’m having an op on Wednesday and gen anaesthetic for bunions. 2 hours under. I’ll make sure the anaesthetist is aware.

PMRpro profile image
PMRproAmbassador in reply toSeekingasolution

Make sure you do - and post-op too, it is said to be painful. All the best!

SnazzyD profile image
SnazzyD in reply toSeekingasolution

Ditto. This is the problem and actually I had a crisis last year after a week of Covid which necessitated IV hydrocortisone. I thought it was the Covid until I suddenly collapsed and felt my end had come, not just because I felt bad, but that still, inner feeling that one is in serious trouble.

Seekingasolution profile image
Seekingasolution in reply toSnazzyD

Gosh. Nasty. I had a day when I’ve never felt so ill in my life - but it passed. I’m not sure whether I’m glad or not that I didn’t know all this. It would definitely have prompted me to action and seek help but these days I wonder what sort of help you’d get with the NHS overburdened and a fair amount of ignorance on this condition.

PMRpro profile image
PMRproAmbassador in reply toSeekingasolution

As long as you are aware enough to say adrenal crisis I suspect most 999 calls would trigger a Cat 1 response - how soon the paramedic would arrive with the needle is another matter. You'd probably be OK where they have flying squads - you just need the jab and not necessarily transporting.

SnazzyD profile image
SnazzyD in reply toSeekingasolution

When we called for an ambulance we said it might be adrenal insufficiency and they were here in minutes. If I was asking for advice because I thought it might be adrenal based, I wouldn’t open with PMR/GCA but Pred and that it might be adrenal insufficiency. They can then ask the right questions to rule it in or out and they will at some point ask why you are/were on Pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSeekingasolution

Also re SnazzyD link - maybe have a look at this -

kch.nhs.uk/wp-content/uploa...

PMRpro profile image
PMRproAmbassador

How long is a piece of string? I had a PMR friend in France who was on about 5mg pred at the time and she went off on holiday without packing ANY pred. Ignorance is bliss and she completed the trip of at least a week without any problems at all - not even fatigue!

Another GCA/PMR friend was on about 10mg - which in the end was determined to be her longterm dose - and she had a few episodes that the doctors put down to adrenal insufficiency. She would become very quiet and confused and couldn't respond appropriately when her partner spoke to her. He was educated to get 10mg extra pred into her immediately he noticed any such symptoms, otherwise it needed an injection.

Even after you stop pred altogether and according to a synacthen test all is back to normal, you may have adrenal wobbles due to inadequate response in the event of a highly stressful situation for up to a year or more.

Really aren't any hard or fast rules.

PMRCanada profile image
PMRCanada in reply toPMRpro

Are patients allowed to be prescribed the injection to keep at home in case of emergencies (like glucagon injections for diabetes patients)?

PMRpro profile image
PMRproAmbassador in reply toPMRCanada

I think in the UK they are - but it isn't a ready to jab set-up, you have to make the solution up.

SheffieldJane got a kit sent to her out of the blue when she was referred to endocrinology - sure she'll explain what she got.

winfong profile image
winfong in reply toPMRCanada

I have one (US). It's called solu-cortef (hydrocortisone sodium succinate) and you shoot it into your leg. Never had to use it, thank goodness, but I get a new one every year. TBH, I'm not even sure where it is right now.

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