Secondary AI 3x--how common would it be for the adrenals to not come back
I have now had SAI three times due to prednisone for asthma.
This time around it is not going well and I am wondering how common it is to have the adrenals not come back in a situation like this.
If I exercise, my adrenals poop out.
My period makes them poop out.
If I'm on say 3mg and have stress, I need more steroids.
If I am fighting a cold, but not actually sick, the adrenals poop out.
If I have a great vacation high on activity but low on sleep, the adrenals poop out.
As a result, I am having a hard time staying off prednisone. I have not had SAI like this before. I had 2 good months after I weaned and then I started going downhill for no reason I could discern in August, culminating in what I call an 'adrenal crash'.
It's very frustrating. There's not a lot of info out there on SAI. All the literature says this should only take a few months to resolve, but for me, it always takes YEARS. It is so debilitating. :(
I'm to the point where I don't plan to take more than a 5 day burst again for asthma. If I need more than 5 days of prednisone, it's not working anyway so why bother?
Primary Addison's (or AI) - the adrenals do not work, Secondary Addison's (or AI) - the pituitary is not signaling the adrenals correctly - so I am not sure why you are saying S - AI... The treatment for AI is the same regardless of the cause - replacement corticosteroids.
What is your ACTH? That is what tells you if the source is pituitary or adrenal. Have you had a stimulation test to find out what is going on with your adrenals?
Why is your replacement prednisone? Pred is not like what the body makes, lasts longer than 24 hours and has way more side effects than hydrocortisone like eating bones and the eyes and muscles.
Your adrenals may be gone and when you take any pred up to and over 5mg, you have put them fully back to sleep and they will atrophy when they do that, it is harder to wake them up. Pred lasts a long time.
I don't know what you read that AI only lasts months - it is a lifelong disease. If you are on the pred for asthma (an inhaler), you likely may have has steroid induced-Cushing's that blew out your adrenals.
SAI is the acronym for secondary adrenal insufficiency. Mine is due to asthma, taking prednisone for asthma. So, in theory, I guess this is all pituitary.
The endo I have now is going by symptoms and past history of SAI and not testing, which is kind of bugging me. In the past, I have done the cortisol challenge and had a result of 1 (which is low) and it took a year to get everything working again. The 'official' medical stuff says SAI usually resolves in a couple months?
I also read 'they' prefer prednisone for SAI but I have not seen a rationale for that preference. It does sound like HC would be a better choice, but right now, I'm lucky I have someone who can see that I'm insufficient and will prescribe any kind of steroid, let alone dare to ask for something better.
Finding good medical care for this is almost impossible.
I am struggling with why it is so much worse this time. I mean, I can't exercise without risking a drastic drop in blood pressure and a crash.
I weaned. I was OFF the steroids. I was FINE except for stress dosing in 5 day bursts (lowest dose possible either 5mg or 10mg) and then I tanked again for no obvious reason. That scares me and it makes no sense.
Only testing can tell the difference between primary and secondary. That was my point. Are you tan?
Usually taking pred shuts down the adrenals - making it primary, not secondary - but whatever, the treatment is the same.
Yes it is very hard to get competent medical help!
Um, I can see that you tank after the bursts is that now you need the steroids now full-time. You can go without them if you do nothing (I have no adrenals and go off steroids for testing and don't immediately die) but if you push, your body has no oomph. Have you had a cortisol stim test? And a CRH stim test? An endo to do that?
I have an endo, but they aren't doing the testing. I am trying to work on that and also setting up some kind of coordinated care between endo and pulmonology so I don't ever have SAI again (assuming the adrenal glands come back this time).
I would be willing to travel to see docs BUT my concern is when this all blows up it's hard to travel and often an emergency that can't wait. So I hope I can find what I need locally.
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