I tapered down to 4.5mg a few days ago. Thus far, I haven’t noticed any differences in how I’m feeling but that could of course change.
I’ve read quite a few posts about Adrenal Crisis and an emergency kit that you’re supposed to have. What is this kit and where do I get in from? Nothing about Adrenal Crisis - or, for that matter, Adrenal Insufficiency - has been mentioned to me by any health professionals.
Over what sort of period have to tapered to here? There isn't a lot of point checking adrenal function until you are well below 5mg as that is enough to suppress cortisol production anyway.. Your GP might be prepared to do a basal cortisol test (cortisol measured on a blood sample taken between 9am and 1pm, not earlier nor later) so you have a reference level to see how things progress as you reduce the pred dose further.
I have tapered from 20mg in April 2022 to 5mg in 13 December 2022, with the taper from 10mg to 5mg in 1mg reductions starting last September.
Not too bad - but from now on, I'd say slow down! Give your adrenals a chance.
I don’t have an emergency kit, I do carry a steroid card with me
I have never heard of an emergency adrenal crisis kit. Where did you hear about it?
SheffieldJane has told us about hers. It is an injection pack of hydrocortisone in case you start signs of an adrenal crisis.
Ah is that what it contains?
Yup - just immediately available steroid. Except it is powder, water and syringes which you are hardly going to be able to handle as you enter an adrenal crisis!!!!
When you first mentioned it, that is what flashed through my mind. The making for a sort of sitcom!
I have trained my husband to administer it. It came from my Endocrinologist without warning. It may be out of date now. Never needed it touch wood.
Yes, I remember. But it wouldn't be any use to me! OTOH, if I call an ambo it would be here in 15 mins max.
I kinda wish for husband or ambulance🙂
I've got one too. My guess is it's for someone else in your household to give you. I've never had to use it, but it keeps getting prescribed.
Who did you get it from?
That's the million dollar question! my Rheumatologist said he would contact the Endocrinology dept to provide me with one......they contacted my GP, who rang me to say it was up to the Endo dept who had rung them....needless to say, I never got one!.....
I have 3 or 4 so my family can inject. Also local a&e are aware so they come prepared. Been AI since before PMR as on pred for different conditions. 2 synacthen tests confirmed position
Suffer badly with pred withdrawal & now working towards 6mg.
AI becomes more of a problem with long term pred( 11 years here) . Short term and the adrenal glands should recover more readily
sorry to sound thick but what are the signs of adrenal crisis please?
uclahealth.org/medical-serv....
mayoclinic.org/diseases-con...
It is the main reason a steroid card should be carried so that if someone develops a crisis they have the information that this is a longterm steroid patient. A bracelet is also possibly a good idea.
sick, dizzy, abdominal pain and losing consciousness, if I remember correctly. It’s a consideration if you feel unwell on a low dose of Pred.
I had no knowledge of Adrenal Crisis, neither GP or Rheumatologist mentioned it to me. I read about it on this amazing forum and insisted my GP refer me to an Endocrinologist when I got to 3.5mg Prednisolone. I had a Synacthen test which showed I had adrenal insufficiency and was given an emergency kit and Sick Day Rules. I recently had a second Synacthen test and it seems my adrenal glands have kicked in a bit more and have been told I can reduce slowly to 2mg. Another test due in May and, fingers crossed, my adrenals will have fully woken up and I can dispense with the emergency kit. It’s certainly worth doing your homework and understanding what adrenal insufficiency/crisis is all about.
When I asked my rheumy how I would know if I was verging on an Adrenal crisis...he said I would know because I would collapse ....really helpful....🤔
What a prat!!!! Though to be fair - if you ignore feeling unwell and confusion then it might well be the way you found out!!!
More than helpful, especially if you live alone!
so interesting! I went to endocrinologist yesterday, as I too am now at 3.5 mg prednisone. Doctor questioned why I was there, when I explained wishing to monitor cortisol to ensure adrenals doing okay. She said she would not want to see me until I was completely off of prednisone. She said 3.5 mg was plenty to support adrenal glands and test would not us anything Until completely off of prednisone. mentioned this forum, and other patients that follow -up with basal cortisol test but she simply dismissed.
Long term steroid patients are at risk of an adrenal crisis even at that dose should they be exposed to severe stress and I have to say I am surprised at her lack of interest. Other endocrinologists have been very pleased to see patients at this stage and expressed the wish more patients be referred.
She is wrong about the tests - they can show if the adrenals have any life in them and some people are OK at 2-3mg and can continue tapering without any worries. However - the GP can request a basal cortisol level and when you have a bit of fairly basic knowledge you don't need to have a synacthen test done which requires specialist knowledge. They do require background knowledge to interpret but there was an endocrinologist in Fife in Scotland who had made it his business to interpret levels in children still on pred.
thank you for your thoughts….I must say, I too was surprised, and she had me make an appt in June for when (fingers crossed) I will have possibly tapered off prednisone. Wish I had asked if she had any experience working with long term use prednisone patients.🤦🏼♀️
Above all though - 3.5mg is tons to manage PMR, the lower you get, the closer you come to your goal: the lowest dose that gives the same result as the starting dose did. Even 1mg, even 1/2mg, can be enough to control symptoms when the disease activity is very low and surprisingly many stop pred thinking such a low dose can't be doing anything only to discover a few months later that the PMR was still alive. You go slower at this level - not faster and that last mg is the slowest and sometimes the hardest.
Prof Dasgupta, a top GCA expert in the UK, told us he often keeps patients at 2-3mg longer term is a reduces the risk of a relapse. I say that is him tacitly admitting PMR and GCA last a lot longer than they usually admit!
wonderful advice, I took picture to reference going forward. 🙏
adrenal crisis?
Adrenal Crisis or a Flare?
Rheumatologist advices no reduction of prednisolone while adrenal glands not working and has issued emergency hydrocortisone kit
Flare or Adrenal Crisis
