Adrenal crisis experiences & prevention please.

[RT18]

After witnessing mum’s full on adrenal crisis - unconscious for 90mins - we are thankfully now back home.

I have emergency hydrocortisone and packs to read regarding all the different sick day rules.

The endocrine nurses were lovely and I now have their contact details, but I am wondering if any of you are like my mum and a little older and likely to need to utilise all these rules. With mid stage vascular dementia I am fully expecting more infections and other situations where I may need to implement some of these procedures.

She clearly isn’t able to tell me early signs and so I rely on what I can see and general observations. On Thursday at 5am she was absolutely fine - by 10am when I went to wake her she was unwell with temp and unconscious by 1330 - so quick!

It’s a lot to take on board especially when I have had such poor advice regarding sick day stuff from GPs etc

[Nextoneplease]

Gosh that sounds scary! Thank goodness you now have the information and emergency hydrocortisone!

I do sympathise - my mum had vascular dementia (though not PMR) and several times I had to advocate for her in similar situations eg in her case, kidney failure.

Hope you get some rest now. All the best to you and hope your mum stabilises well 😊x

[Amkoffee]

I will share with you my own experience with adrenaline efficiency and my own crisis. Unfortunately there are as many crisis symptoms as there are people with this condition. One commonality seems to be nausea/ vomiting. Personally I also get a terrible headache and neck pain at the same time as the nausea. Some people crave salt. Generally speaking the crisises I've had wete related to illness. My first one was when I got covid and my Crisis began when I spiked a fever. This is obviously something you can watch your mom for. The second time was a bit sneakier because I did not know that I had a UTI. I spent all of Labor Day weekend last year trying to get control of the crisis here at home because I didn't want to go to the hospital . I have not yet had to do the injection because the two crisises I've had I've been able to keep the steroid down without throwing it up. And that is a big reason we have the injection. Well that and if the patient is unconscious they can't swallow a pill. The rule of course is to double your dose when you could potentially go into a crisis. Don't wait for the crisis to happen. You might even need to Triple her dose. The one I had over Labor Day weekend it seemed I kept having to take more and more hydrocortisone. Finally I Googled prednisone and found out that prednisone stays in the body a lot longer than hydrocortisone. Since I had some left over (from my PMR days) I took some of that. That seemed to do the trick. I later talked this over with my endocrinologist who agreed that I handled it appropriately. I think if you even have the slightest suspicions that your mom might be having any kind of problem is to just double her dose and see how she responds. The main thing for me was that I responded when I took a double dose so I knew that this was an adrenal crisis and not something else.

[RT18 in reply to Amkoffee]

thank you that’s very helpful. It does seem to be illness and dehydration that is our trigger. I have felt conflicted in the past as GP has always told me not to increase pred - but now at least I have been given the medical clearance to do that and inject as necessary. I appreciate your time in posting, thank you

[Hirondelle]

poor you. How frightening. I am 79 and after 2 years of PMR was diagnosed with secondary adrenal insufficiency in April, by a private endocrinologist through a private rheumatologist as unfortunately my gp surgery marked my very low 9 am cortisol test result as ‘abnormal but to be expected ‘ . A week later I had 9 hours of vomiting and diarrhoea which the surgery again said was nothing to do with adrenal failure and had I been consulting Dr Google? So I went private and had the synacthan test. The down side of having gone private is that although the endo asked the gp to refer me to the NHS clinic at our local hospital , I had an acknowledgment letter of my existence from them but nothing else. I am not well and would love to either see or talk to someone at the hospital but the GP just laughed and said good luck. I have some spare prednisolone tablets and I suppose they are what I should take when I feel very cold and shivery as I have this week despite heatwave. But it would be so helpful if there was a nurse on the end if the phone. My daughter lives 4/5 hours away but I have good friends who have said they will learn how to inject me with every complicated 2 vials, 2 syringes. Fingers crossed !

[PMRpro Ambassador in reply to Hirondelle]

I would report the GP to the local commissioning group. That is utterly unacceptable and they could kill someone.

Paramedics are very good at doing the necessary - have a sheet pinned to the fridge or somewhere else prominent with the instructions and where everything is. And never hesitate to call 999 and say potential adrenal crisis which should trigger a Cat 1 response by at least a first responder.

[Hirondelle in reply to PMRpro]

thanks PMRpro. Fridge covered with instructions including how to give injection as I can’t - tried to do it at surgery with kind nurse and I have a small tremor! Also instructions re my dog! When I tentatively asked GP if practice was now up to date, she shouted if course. I won’t report as GPs v scarce herev(Suffolk) and it might top her into retirement as our senior partner is doing.

[PMRpro Ambassador in reply to Hirondelle]

If a GP SHOUTED at a patient they NEED reporting ...

[RT18]

so sorry to hear your experience Hirondelle . I have been flagging adrenal insufficiency for a year wirh our GP and it has taken a full blown crisis to get response.

I echo PMRpro advice to call paramedics and say adrenal. When I have done this they have come very quickly and injected without delay. We have been given instructions to register mum with ambulance service so any call from her triggers a CAT 1 as any minor illness can lead to adrenal crisis. Also not all crews will carry hydrocortisone so she should be allocated a crew carrying it.

Do you have a family member that can advocate for you? I found a whole section on Addisons Support website about communicating with GPs regarding adrenal insufficiency which was very helpful .

Also to contact endocrinologist to get linked into the nurses. We have been told mum will be seen probably only once by the Doctors as her pred dose is too high for them, but the nurses can be contacted should I have queries.