u/Hrotter1

Hi all, looking for clinical input on a nuanced case.

Background:

33-year-old female with secondary adrenal insufficiency (exogenous steroid-induced HPA suppression, started February 2026). Had a series of adrenal crises last week requiring 150-200mg hydrocortisone daily for approximately 5 days. Now stabilizing and actively tapering back toward maintenance — currently at 35mg and reducing.

The problem:

Significant steroid-induced anasarca — bilateral knee edema affecting ambulation, facial/cervical edema, dorsal hump edema, and occipital/scalp fluid accumulation at peak. Edema is now resolving naturally with dose reduction but progress is slow and uncomfortable.

Current labs (taken mid-crisis):
• Sodium: 137 (low normal)
• Potassium: 3.8 (low normal)
• Electrolytes otherwise stable

Additional context:

Patient is also on Mounjaro (tirzepatide) 2.5mg weekly. Nonsmoker.

The question:

Has anyone managed steroid-induced anasarca in an SAI patient with furosemide in an outpatient or home setting? Specifically:

• What HC stress dose coverage protocol did you use alongside furosemide?
• Given borderline sodium and potassium — would you consider this too risky without inpatient monitoring?
• Is there a lower furosemide dose (10mg rather than 20mg) that might be safer in this context?
• What electrolyte thresholds would make you comfortable or uncomfortable proceeding?

Patient is medically literate, self-managing well, has injectable HC available, and is actively monitoring symptoms. Thanks in advance for any clinical perspectives.

I’ve been in and out of adrenal crisis for almost 10 days due to grave mismanagement by my endo, and finally admitted myself under a different endo at the hospital. Current plan is stabilizing me for 3 days on around 200-150mg hydrocortisone/day.

My question is: how do people usually transition from ICU/hospital-level dosing back down to physiological dosing after a bad crisis?

What kind of dose were you discharged home on, and how fast did you taper back down? I can’t imagine tapering by tiny 2.5mg steps every few days starting from like 80–200mg HC… that would take forever.

Just trying to understand what a normal recovery taper looks like after severe instability/crisis.

PS: halfway through this process my regular endo told me “secondary AI patients can’t have adrenal crises” 🤡 and “if you want to stay on high dose steroids go ahead, you’ll just gain weight.” So… yeah. Looking for a new doctor now.

I’ve had two adrenal crises this week.
I was doing so well. I had tapered all the way down from 30mg to 20mg slowly, carefully, paying attention to every signal my body gave me. And then everything unraveled. This week I couldn’t stabilize on 40mg a day. I had to inject today just to keep myself from going under.

I’m discouraged in a way that’s hard to put into words. It feels like all that hard work was erased. Like my body betrayed me after I trusted it.

And when I’m in crisis — really in it — the thoughts that come are brutal.

“It feels torturous to be stuck between life and death.”
“I will never be normal again.”
“I don’t know what to do and I feel completely helpless.”
“This disease is going to kill me.”
“My life is worthless if I’m not fully functional.”

I don’t think I’m alone in those thoughts. I think they visit a lot of us in those dark hours.
So I want to ask: What do you say to yourself when the crisis thoughts come? What words have you found, or fought for, or borrowed from someone else?

And what would you say to me right now, in this moment?

Because here’s what I’m trying to tell myself today:

“Now I’m alive. And because I’m alive, I know what to do to stay here.”

“Asking for help is not embarrassing. It is being connected to the collective consciousness of life.”

“My worth is here and it will never go away. It is not determined by my level of function today.”

“Fear is loud. But it is not guidance.”

“Patience is the sage that will walk me through this path, not ambition. Walk the balance.”

Hi everyone,

I’m currently tapering steroids for adrenal insufficiency and it’s been really rough (down from 30mg to 20mg hydrocortisone).

I feel like I’m constantly right on the edge of a crisis. Weak, shaky, wiped out, however I’m proud that I made it through this 10mg reduction with determination and no crises to date. I’m going as slow as possible, but It’s making me anxious about whether this will settle after I’m off steroids or if this is what life will feel like for a while.

For context, before starting steroids my cortisol was 7 and I failed the stim test by a small margin. I actually was not having adrenal crises before treatment. The crises only started after I began steroids, which has been really confusing and scary.

By the time I’m done, I’ll have been on steroids for about 3 months (Feb 17 to May 22, around 95 days), so not extremely long compared to some people here.

For those of you who successfully tapered:

- After you finished tapering, what was your day to day function like?

- How long did it take before you stopped feeling like you were close to a crisis all the time?

- Did things gradually stabilize or was there a turning point?

What does normal look like for you now, especially in terms of avoiding frequent crises?

Right now I’m mostly bedridden and I have been even while on higher doses, so it’s hard to

picture what recovery looks like from here.

Thank you to anyone willing to share. It really helps to hear real experiences.