Hi everyone, long time no speak - hope you are all doing OK
At my last but one appointment, my consultant discovered that reducing my preds from a 5mg dose, by 1mg a month is too quick and I became quite sick. Shivers, cold, slurred speech, falling asleep at my desk etc. So before I left the hospital they gave me a dose of preds, kept me there for a bit and then let me home.
An ACTH stim test was ordered for last Tuesday, my steroids were withheld for a day and prior to it starting, the doctor warned me about palpitations, anxiety, nausea - all the stuff associated with stress hormones so I was prepared for that and patiently waited the injection.
Not long after the injection it was like someone pressed the 'slow' button and I went down a few gears. The doctor was talking to me and everything was delayed including my responses to him. He was saying 'stay with me' and trying to keep me awake as I was so sleepy.
My hands went cold and sweaty which is what you would expect but I felt really confused and my speech was slurred, the doctor said he wasn't happy with my colour and said I was 'shut down'.
I had zero anxiety or palpitations but the desire to sleep was huge and I even slept in the chair. It was a good job I took the day off work and didnt attempt to drive, that is all I can say.
I got home and slept for the rest of the day and wasn't too bad, but the next day it was like a truck had hit me. Lower back ache, everything hurting, freezing cold, 'shut down' again, slow speech - it was horrendous and someone said afterwards you get a 'feeling of well being' after that test (I didnt). I think they will call me with the results, and if everything is OK and I am making my own steroids, then they will try and get me down by 0.5mg in the New Year which I am happy about as it is always nice to have a plan.
I am still having slumps in the day where I fall asleep at my desk but that could just be the drugs.
For a few months now my appetite has been zero, like my stomach isnt working properly, I feel literally no hunger and force myself to eat and even then it has to be small tiny meals as food just sits there and doesnt seem to digest. Food smells really strong to me, like ever so strong and makes me feel sick, its awful and my poor husband is at a loss what to cook. Weight is falling off me now and whilst its nice to order smaller clothes, I believe weight loss should be done by sensible eating and not illness, besides - I feel terrible.
My diagnosis has changed from Sjogrens to UCTD and I am now on plaquenil, MTX, Cellcept and preds 5mgs. So I dont know if it is the medication making my appetite go and my sense of smell super sensitive, somehow I dont think it is but you never know.
Has anyone here had the stim test and how was it for you?
Thank you in advance
Last edited by Corella; 10-11-2014 at 06:17 PM.
I'm sorry that you've had no responses to your question. I've never had this treatment, so I cannot give you and anecdotal replies about it's affect. I do hope that someone answers your question.
Please let us know how you are doing as what you described sounded very scary!!
Peace and Blessings
Look For The Good and Praise It!
Well yesterday I found out why I felt so crook during and after the test. It appears I have adrenal insufficiency and will need 'emergency' doses of steroids in times of stress - whatever that means and I have to remain on 5mg of preds.
I dont know if I will always need them or if adrenals repair, I dont know. Also my creatanine was raised and there was protein in my urine. My ALT was slightly up but only slightly.
Got the GP next week so i shall ask him.
OK..keep us posted on how you are doing!
Peace and Blessings
Look For The Good and Praise It!
The one test known to man I haven't had. So sorry you feel so bum. May you find the right meds at the right doses to work for you.
Well now I can say that I truly understand the importance of cortisol and how important it is in order for our bodies to cope with stress. I am not just talking one kind of stress, I am talking about the type that enables us to do our jobs, to rush around and work hard, to cope with unpleasant situations, to cope with illness.
I drove past a big car accident yesterday, we were all diverted, the fire brigade were cutting people out and as I was about to turn right to be diverted, I felt my body go cold from my feet upwards - like freezing chills. I had only seen the wreckage, not the accident itself but that was enough stress for my body to react.
Last night I was exhausted, dizzy, aching in my lower back - I felt dreadful.
Now although I wanted to come off my preds and had only reduced from 5mgs to 4mgs, it has been noted that each time I attempt to reduce, I crash each time and have sort of resigned myself that my joints and my connective tissue disease need the preds.
And now I have been diagnosed with adrenal insufficiency, my entire body needs the steroids in order to function. We don't know if it is steroid induced as yet as I havent been on large doses that normally associate with this condition.
But what I do realise and now accept, is that steroids protecting you from your illness is one thing, but when your adrenal glands do go wrong, it really hits home just how important they are.
So to all of you that hate the preds, I hear you - totally hear you. If you have been on the preds for a while, it is worth getting the ACTH Stim test to find out where your adrenals are at as the symptoms from insufficiency alone, can be as nasty as your AI disease.