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addisons disease

(13 Posts)
funnyperson Tue 09-Aug-16 02:29:15

Has anyone else got this? How often do you have an adrenal crisis? What is it like?How do yo mange your steroids if you think you have a crisis? I have a ' sick day regime' but I think I usually implement it too late when I feel really dizzy and ill.

LittleOyster Tue 09-Aug-16 20:43:30

I was diagnosed with this just over a month ago, after going to A&E in crisis. Right now I am trying to get used to the medication: I've had lots of ups and downs, but nothing approaching a crisis.

What is your sick day regime, OP? Also, something I am not sure about: is it helpful to increase steroid cover during times of great emotional strain?

funnyperson Sat 13-Aug-16 22:27:22

My sick day regime is to double the dose of steroids till a day after I am better, with iv steroids for operations
What did your adrenal crisis feel like?
The written info I got from the doctor said not to increase the steroids just for stressful days so I dont.

Wildernesstips Sun 14-Aug-16 07:41:36

I don't have Addisons, but do take steroids for a hypopituitary disorder. The Pituitary Foundation have a really useful pdf guide which includes all the sick day rules and details on how to administer the solu-Cortef injection.

I double my dose if I feel unwell but not usually for more than a couple of days. I used to do it too late as well op, but I thought I wasn't doing myself any favours so do it earlier now!

ElphabaTheGreen Mon 15-Aug-16 16:33:31

I've got adrenal insufficiency - still undergoing tests to determine whether Addison's, hypopituitary or something else, but I've also had the dubious pleasure of a crisis.

I felt very light-headed and 'other-worldly'. Shooting pains down arms and legs. Diarrhoea, shakes, nausea. IV hydrocortisone in A&E turned it around pretty quick, although I did feel crap for some time afterwards.

I've been told to double steroids for 3-5 days when ill. I'd still like a little further clarification from the endocrinologist on this, though.

funnyperson Tue 16-Aug-16 22:01:09

Yes I feel a bit 'out of it' and sometimes a bit sick, weak, yawn a lot, sleepy
Then joint pains and very dopy.

funnyperson Tue 16-Aug-16 22:01:54

There is always a stage when I think its psychological before I cotton on.

Wildernesstips Wed 17-Aug-16 15:37:22

I know this is a bit off-topic, but do you find it hard to maintain a steady weight on steroids? I put on 2 1/2 stone initially when I went on them but have managed to lose 1/2 stone and maintain that for the last year which I think is mainly down to my doctor lowering my dose. However, I can't seem to shift any more weight.

ElphabaTheGreen Wed 17-Aug-16 17:25:05

I've not been on them long enough to gauge, but weight gain is a side effect of steroids, as well as Cushingoid symptoms which make your face look rounder and fuller, and therefore 'fatter'.

Floralnomad Wed 17-Aug-16 21:46:01

My mum has had Addison's disease for 50 years , if she feels unwell she doubles her steroids for a few days , we keep IV hydrocortisone at home for use if she needs it , apparently when she was diagnosed she was gravely ill but since I was a child ( I'm 50) she's only been hospitalised with the actual addisons about 3/4 times . She is 76 this year and does have multiple health issues now.

funnyperson Fri 19-Aug-16 16:47:28

Weight is a real issue for me and definitely affected by the steroids which not only make one apple shaped and round faced but also increase the appetite. Actually I read somewhere that some people split the dose so I am trying that on the assumption that if I feel hungry when asleep I am less likely to eat

funnyperson Fri 19-Aug-16 16:48:36

Floral nomad how did your mum know she needed to go into hospital and dud you ever need the Iv hydrocortisone?

Floralnomad Fri 19-Aug-16 16:56:04

When I was about 10 she was in for about 3 weeks and that I think was because she just felt unwell and was fainting and the other admissions have generally followed bouts of d&v when she hasn't been able to keep the steroids down . She has had IV steroids at home once but they were administered by an on call GP , but I am a retired qualified nurse so would be happy to give them if I felt we couldn't wait for medical attention . I have found that some GPs don't seem to grasp the problem with vomitting and the addisons patient athough that's hopefully improving .

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