Adrenal Insufficiency

[Susie_b]

Hi I have been into hospital for further blood tests to monitor adrenal function and my body is not making cortisol so sadly I need the hydrocortisone dose. I don’t know if this is the same for all in this situation. I may even need to have my doses increased. The steroid is holding my Vasculitis too. I take steroid inhaler and nasal spray daily as well. Do your Drs have a plan for your care ?

[ludo]

Hi Susie, I've been on steroids since diagnosis some 13 years ago and have been unable to get Lower than 5mg. Apparently tests show I'm borderline so I've been advised to stay on them for life now. I've also been told that if I have a systemic illness with a high temperature then to double my dose during that time.

I'm not overely concerned as 5mg is a low dose of prednisolone and it's keeping my body functioning. They saved my life along with Mychophenolate and I'm only on the steroid now.

Hope it works out for you too.

Best wishes

[AndrewT in reply to ludo]

Well said ludo.... I'm on 6mg, I can't 'go' any lower- else I get a 'flare'. I have a Slightly Different Diagnosis, to you.... ANCA Vasculitis, Kidney Damage- Transplant in July 2013- and ' A few Other Bits' too. (including Frontal Lobe Damage).

I too have to 'Up' the Steroid, if I become ill, my Doctors/ Consultants tend to leave this to Me now..... I guess they Figure that after 23 years I know what I'm 'doing'!

AndrewT

[ludo in reply to AndrewT]

Thanks for replying Andrew. Glad to know I'm not the only one that has been unable to get of steroids but I guess it's not surprising after being on them for such a long time.

Sounds like you have had a rough time. I have GPA with sinus and lung involvement originally. Thankfully I'm in remisssion now. I was very lucky to be diagnosed within a few months before it spread elsewhere. Do hope your in remisssion and keeping well.

Best wishes

Ludo