I am 83 and was diagnozed with GCA in October 2019. I finished the course of prednisolone on the April 2021 without having had a flare up.
In early January 2021 I had a successful left knee replacement. Unfortunately, no provision was made for my GCA during, or after, the major surgery. For 3 weeks after discharge I would wake up tired and weak, I had no energy to do anything, no appetite, was irritable, felt nauseous, and slept most of the day. I wrote to both my GP and to my rheumatologist (now a consultant) to ask if this was a result of adrenal insufficiency. He advised I increase my daily dose of prednisolone to 10mg a day before the right knee replacement.
Following the completion of the course of prednisolone in April, I experienced more days of severe fatigue (feeling wretched and sleeping most of the day). I wrote again to my Consultant pointing out that these occurred the day after activities like walking, going to the gym, working in the garden, or when I was stressed out.
Around this time my dentist told me he would had to start removing all my disintegrating upper teeth because of the effects of prednisolone.
I wrote again to my consultant in some distress at the beginning of June saying I was now sleeping more and more of the time irrespective of any activity. At last on the 14 June I got an appointment for a Short Synacthen Test (SST) to check the effectiveness of my adrenal gland. A week later I was told to start a course of Hydrocortisone 10mg morning and 5 mg evening, and that within a few months my adrenals will recover. Within a week I began to feel an improvement.
I still wake up mildly depressed, but it is no longer such a struggle to get out of bed because of the anticipated benefit of an “ice-cream head”. Standing under a (Scottish) ice cold shower I am immediately energised, and alert. I can now look forward to the day, and whatever it brings. Sometimes, but less frequently now, within an hour of the shower my mood changes, my energy disappears, I’m tired and asleep. The good news is that by lunch time, my mood lightens, my energy returns and life feels worthwhile again.
At last I feel confident that I’m on the way to fully working adrenals. Hopefully, I will be in the gym this winter, and back on the bike next summer.
Written by
VicSat
To view profiles and participate in discussions please or .
What an amazing story! I really admire your perseverance and feel convinced that all will unfold as you predict. I haven’t heard “ice cream head” since my childhood in Edinburgh. I also feel wiped out following my morning ( luke warm) shower and sometimes fall asleep with wet hair. I hope this phase passes. I need some of your backbone and attitude I think.
Yes, I agree, think I will have to be more persistent with how I'm feeling....it's a struggle every day to stay awake...having done nothing!.....I'm not sure what I'm supposed to do next......I hate to keep bothering Rheumatology....knowing they are so busy...
Since I retired I have kept a detailed record of illness, and disputes I've been involved in etc. When I am clear about the need to write to someone, I check my records, dates of incidents, and any replies. This gives a rheumatogist, say, a carefully worded statement of what has happened and the state I am in.
I don't think it is putting any pressure on a professional for him to read what I have written when he has the time and space. I avoid phone conversations wherever possible.
I think you do more than you think. Look back at your old posts. You are on it. Maybe keep a record to give yourself a sense of progress. I love sleeping, I worked very, very hard for a lot of years. I still enjoy the feeling of no commitments.
Love the "you are on it"....when I definitely had PMR...things were different, even the fatigue....my family noticed about 18 months ago that I had got worse...this Adrenal issue is different...my legs are very weak, but heavy., I am dizzy, no appetite...Today I went to my sons, just sat in garden while OH walked the dogs....I have a big birthday coming g up in September....my son knows I struggle to walk so is picking us up to take us out to maybe sit at the coast or the Broads....normally I would treat all family to restaurant meal, and go on somewhere, but most days so sleepy.....if can't make it my son and DL will understand....this is what I hate.
I am ringing Rheumie's sec on Monday, because not sure if I should be lowering or not, to hope that my adrenal s wake up....and me too!
Some people on here just lower....and quickly, this puzzles me...thought it was dangerous...😏
Ignore everybody else, it’s not a race and I think there are degrees of severity in our conditions. You are in a particularly difficult phase - me too. My husband has booked eye wateringly expensive tickets for Cabaret the musical, in London, with Eddie Redmane, in dining tables at the front of the stage, dressed up in 1930’s clothes. As a treat, to cheer me up. Hand me a revolver. At least your family gets it. 😩
My son has always got it...OH, no, "If you haven't now got PMR, what's going on now? " grrrrrr........but he does everything really....I just do laundry and cooking....
I suppose I like answers so I know how to deal with things...
Eddie Redmayne is brilliant, have your sleep before you go!!.. 👍
Cabaret not Chicago ( shows how engaged I am). It’s not until January, thankfully. I might be better ha ha .Definitely rest, and scope the loos, write off the following day. The dread though. I get a lot of support cooking and laundry, increasingly housework. The latter has to be pointed out though. My son does his bit too recycling, building furniture, dishwasher, gardening. Can’t complain but I feel pointless. I’d love to be able to plan for a predictable future.
I'd forgotten about ice cream head. I used to get it every time we used to visit my grandparents in Motherwell on a Sunday and they'd get ice cream from the local Italian café. They didn't have a fridge or freezer so my Dad would be sent out to get it. Why don't I get it now? Is it just that I've managed to learn to eat ice cream in a more civilised way at long last I wonder...?🤔
I have never tasted anything like that pure white Italian ice cream since my Scottish upbringing. Grecoes in Dunbar. The gobbling caused the headache I think.
Yes it was always absolutely pure white wasn’t it. I’m sure all the Italian Scots cafés used roughly the same recipe which was probably brought over by their grandparents in the late 1800s...
Dear VicSat so sorry to learn about the difficult time you have experienced in the past six months, but my word what an inspirational story. I'm too fragile of a morning to try the ice cold shower, but I too feel the same way as you do of a morning.
The way this all drags on makes me think sometimes that it would be easier to just slip away, though I am not depressed or would ever do anything about it. It just grinds you down sometimes as does this heat. Stay strong everyone, the rain will soon be here to break this heatwave.
My GP suggested that after a shower I should spray my feet with cold water. ( even in the winter) she said that this is good to get the circulation moving.
I hear that the U.K. is the object of much mirth across the Atlantic for what we are calling a heatwave ie 31 degrees or 88 Fahrenheit. However our insulated non-air conditioned cosy little houses are not built for it. 😉Keep smiling !
You had told the surgical team, especialy the anaesthetist on the day, that you were a long term pred user? If so - I'm appalled! They should have used hydrocortisone during the op and monitored you closely post op. But I wouldn't trust anyone below anaesthetist to know - and even less the surgeon.
I wouldn't get my hopes up too far that your adrenal function will recover - it may do but it could take a year or more. However, in the meantime you are being managed properly at last.
You had told the surgical team, especialy the anaesthetist on the day, that you were a long term pred user?
No, unfortunately, since I had told the surgeon at pre-admission. My (locum) rheumatologist in Edinburgh knew I was soon to have an operation but did not inform orthopaedics at the hospital in Clydebank. (I had little confidence in him as his lack of action throughout is now clear to me)
I have to say - I would tell EVERYONE until they were fed up with me! I'd even consider a post-it taped to my forehead! The new steroid card was issued because of lack of awareness of long term steroid use in emergency situation - seems to not help in some cases!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is there a test for Adrenal insufficiency?
Adrenal insufficiency or what? 
Adrenal Insufficiency
Adrenal insufficiency? 
