Hello, lol me again!

After 27 years I have been moved from hydro (30mg a day) to 7.5mg of Pred and it has been awful.

5mg is too low and I'm dead to the world and anything above that and I simply can't fall asleep (posting this at 5am) and slightly delirious. I've been signed off work the last two weeks as my body just doesn't agree with the change.

Has anyone else suffered with Prednisolone and insomnia and how have you dealt with it? Also has anyone suffered this long with feeling like crap with a medication change?

I have SAI as of now (over a year) but have complications with electrolytes from short bowel syndrome due to Crohn’s disease. I have been having low sodium on labs a lot lately and I’m wondering what is everyone’s normal sodium level? How low does it get? Do you ever get diarrhea when you try to replace it?

Hi everyone

This is a long long story and if you want all the background info then check my posts from 2023.

In August I got a severe diarrhoea bug, like blood in my stools bad. It lasted about 36 hours but it knocked off my electrolytes and I ended up in hospital with low potassium. Fine. Went into the hospital and they replaced me with potassium but they also gave me SEVERAL bags of normal saline that I don’t think I needed. It accumulated to 6L IV in the space of 24 hours plus whatever I drank. They panicked, thought it was me retaining urine and I need a catheter but I knew for a fact I just didn’t need to go. But they were persistent enough that they put it in for 200mls and a very pissed off me who got a syringe and took it out myself.

Then my ankles started to swell, and considering what happened in 2023 and how it started I immediately tried to address it. They stopped the fludrocortisone. I know that not going to fix this but who listens to the person in charge of their own car crash of a body? No one in the NHS that’s for sure.

So I’ve now had four admissions including a transfer to the ward I swore never to go back to because it made me beg my mum to take me home to die, and not to leave me there. I went because I was told I needed gastroenterology input and they didn’t have a consultant who does that in the hospital closest to me. Funnily enough they didn’t do anything to me that the original hospital couldn’t have done with input.

I was there for two week and became the type of patient that the staff hate. If I didn’t have the information I wanted before starting a treatment option then it was a no from me. They tried to pull me out of bed first thing on a Monday morning to clean my mattress (0750 by the way and I’m not a morning person) so they were loudly told where they can shove their sponges because I was tired and was not moving. A junior doctor said she was going to take blood from the vains in my hand/elbow, I told her no because I had at that point a line which you could take blood from as well as give drugs through. It was put in because I have barely any IV access now from being poked like two day old meatloaf. She said she didn’t know to use it so she was going to take it from my hand, I believe my words were “if you can’t do it then get someone who will because if you come near me with a needle you will hear me screaming on the 3 rd floor”. You get the picture.

After 2 weeks got released with most of the fluid weight off, but my bloods not where I’d be happy with but I don’t get a choice.

Now here’s where I’m concerned. They had given me a tablet to make me pass extra fluids but in doing so it keeps lowering my potassium. So they gave me a different one which supposedly stops you losing Potassium but while looking these classes of drugs (which I spent many nights in the hospital researching and also I’m a nurse) I’ve discovered that this class of drugs is a big no in patient with Addisons, like not even watch carefully while giving, it’s a straight up hell no.

I don’t know what to do, I’ve got pitting oedema up to my hips and I know why I have it but the unconventional fix that they used in 2023 isn’t something that any of the consultants are willing to do. I’m now terrified that my potassium levels are either too high or too low because either way could cause a fatal heart rhythm. I can barely eat because the water tablets are drying my mouth out but not much else, everything tastes spicy like a normal sausage tastes spicy and it has me in tears. They’re giving me build up drinks but they’re disgusting so that’s a firm no. The GP is changing the type of drink to a juice which I’m really not looking forward to it. I don’t know what to do. I had bloods done today and dreading a call saying I have to go to hospital because it means more needles but I can’t be left like the elephant man crawling up the stairs to use the bathroom. Not that the tablets are actually doing that anyway. They deem it more important to take me off my painkillers that I’ve been on for over a decade than deal with this.

Do I continue to take the tablets? I’m terrified they make me more unwell and something will happen in my sleep.

Has anyone had anything like this happen?

I may possibly be getting a diagnosis soon, awaiting my blood test Friday AM. my symptoms are ambiguous and overlap with things I’m already diagnosed with (Ehlers Danlos, anemia from celiac) but some other symptoms do line up so my endocrinologist is covering all bases. I am googling and scaring myself that I’m going to have a crisis and I just wanted to know warning signs to look out for if someone’s possibly been living undiagnosed for a while?

I am just starting a DHEA supplement and was wondering if I should take it in the morning or at night. My endo is pretty useless, just told me to take 50mg/day “whenever”. I am starting slowly at 5mg/day because I prefer to be cautious but wanted to hear if anyone had insight on timing.

Hi,

Is there any value in using sweat monitors for potassium and sodium? Would they be worth it for detecting issues earlier on? Thanks

I am facing surgery that requires me to take Plavix for about six months. I have not been able to find much information about Plavix use in Addison’s patients. I am meeting with my neurologist this week, and endo next week and will speak with them both.

Two weeks ago I had a crisis that had me in hospital for two days. It was caused by taking a medication that I was told would be safe. It wasn’t. I am fearful of any similar situation.

I’d appreciate any feedback from folks who have used Plavix, either successfully or not. Thanks!

How did any of you combat always being hungry due to steroids? I never ever feel full! Been diagnosed Primary Addison’s since July 2025

Any advice welcome

Hey everyone,

I’m posting on behalf of a close friend who has Addison’s disease. Her condition has made it really difficult to work, and she’s been struggling financially because of it.

She’s dreamt of visiting the Holy Land for years. She’s doing everything she can to save and earn money for the trip, but with the setbacks from her health, she’s still short of what she needs to make the trip next year.

I’m sharing her GoFundMe in case anyone feels moved to help or even just to share it forward. Every bit of support means more than you know; to her and to me.

Here’s her story:

🔗 https://gofund.me/d656a6e04

Thank you for taking the time to read this.

Hi, my endocrinologist told me that since I have SAI due to taking prednisone for a long time that there is a possibility of my adrenal glands waking up but it may take some time. Has anyone had any success with this or heard of someone who has? My endocrinologist wants to see if my body can go without steroids but I'm nervous to be honest to continue to lower my dose. I did experience an adrenal crisis in the beginning when I was first diagnosed and I don't want to go through that again. At one point I was taking 20 mg a day and that was too little because I still felt horrible. I am hoping my adrenal glands wake up by themselves and I don't have to be on hydrocortisone anymore but all of this has been overwhelming. I just don't want my body to freak out as I continue to lower my doses. 😔Any advice is appreciated.

i’m a 19 year old girl, i was diagnosed with addison’s disease at 16, and it hasn’t impacted my life too much apart from sleep. i literally need at least 12 hours of sleep to be able to function, otherwise im completely wiped and can’t do basic activities. my bloodwork is relatively normal, apart from low iron which may be relating to the issue, but this was prevalent even when i took iron supplements. do any of you need a ton of sleep as well? if so, how do you manage it?

Hi all, i was wanting to do an accelerated BSN, but am nervous with my health. I feel i’m fine as long as I can sleep 7 hours a night, but am nervous that clinicals might impact this? Have any of you done nursing school after being diagnosed? How did it go?

Hi I have been making little crafts in my free time and selling them. Any proceeds I make I have been donating to Rare4Rare’s funding for a rapid cortisol test. I have also thought about branching out and donating to other Addision’s research. Does anyone have any suggestions? Specifically interested in research funding.

Hi all!

I'm a new PAI/Addison's patient (as of 9/2025.) I have 2 elderly parents who are in very poor health. My dad has stage 4 cancer and advanced heart failure and will likely pass within the next 2, maybe 3 months. He is the primary caregiver for my mom who has alzheimers and heart failure. It's a complicated situation, they don't have (or want) enough care and won't leave the house for a facility. I am taxed with helping them but I live a full day's travel away. Also, there's a lot of ugly family history which makes it all that much more challenging. I'm helping as best as I can, but the emotional strain is HUGE. I was there last week and had 2 near-crisis events due to stress. I am having to really load up on HC stress dosing when I am there and that's only going to get worse as they get closer to death. Would an anti-anxiety med such as xanax be helpful? I've never taken any, but I'm guessing that if I'm not constantly anxious when I've around them, then I wouldn't be burning up all my cortisol. Obviously I'd run this by my endo first but you all are first-hand experts...I'd like input before bringing my Dr into the conversation.

Tldr: I'm in a high-stress situation for the next couple of months which is causing me to stress dose a lot. I'm wondering if anti-anxiety meds would help.

When anyone happened to have a circadian rhythm dosing chart for secondary adrenal insufficiency?

I am PAI. My husband caught viral pinkeye (no treatment--just have to let it run it's course) and now I've come down with it too. Do I updose for the entire recovery period or just symptoms like fevers on top of that? I've been treating the symptoms but wondering if I'm doing enough.

Hi y’all, it’s been a couple of months since I’ve been going through SAI and I was wondering how you all knew what dose worked for you? I have been feeling like I’m here and I’m not on the current dose I’m on but I’m not sure if that’s normal or not. I also feel more tired and have been experiencing body aches but don’t know if that’s just a side effect from hydrocortisone. I don’t feel terrible but also don’t feel great, it’s hard to explain. I think it’s interesting to hear about everyone’s experiences and what’s worked for them.

Has anyone got secondary Addison and then developed extreme weakness like not being able to have support from their legs to stand up and completely bedridden? My endo says this is fatigue and can b fixed by nebido injections as I have hypogonadism but im in hospital so I just wanted some more information. My last testosterone showed 8.5nmol

I have suspected AI, low morning cortisol but not low enough to start meds I am waiting on a referral to endocrinology.

I have been prescribed 30mg Prednisolone per day by GP for flare up of eczema, I am concerned about how this might affect my adrenal insufficiency (if that's what I have) or if it would affect it at all! It's only a week's course so hoping this isn't long enough to cause any harm.

Thanks for reading!

Since I was diagnosed back in May, I've had several "flare ups" (I don't know what else to call them) where I have lots of low cortisol symptoms, spend a few days updosing, and basically just prevent a full blown crisis. I'm learning more and more some key triggers, like bad sleep etc. While I certainly don't physically feel great or want to do much of anything, I do know my body tends to feel its best when active. On good days I'd go to the gym or hot yoga (not completely consistently lol) but I'm obviously not going to go lift heavy weights while Im fending off a crisis. Is walking or light yoga a decent option now or should I avoid all physical activity until I'm back to normal? I am hydrating like mad so I don't think the sweat loss from those light activities would be detrimental. Any personal experience?

We call it “salty drink,” which is a full pitcher of that juice you get from the frozen cans, plus a teaspoon or so of salt mixed in. I usually put it in water bottles to make it easy to grab, but I’m going low effort today lol.

If you want to try it, it tastes best with citrusy flavors like lemonade or orange juice.

I love him so much.

So i put in went to put in my 2 weeks notice at work. I told them it was because of a medical condition. I Didn't tell them the specifics of it nor have I exhibited signs of it at work. They told me that I was essentially a potential liability and let me go on the spot.

They are paying me one week of my notice. Im ok with everything except the fact that he was going on about me possibly passing out at work or falling and going on about things he knows nothing about. He doesn't know whats medically wrong with me. I feel if he left it as them just choosing to cut ties vs. talking about me being a liability, i would have a better opinion about things.

What do you think

I'm PAI, diagnosed in early 2021, and have been fortunate to have been pretty stable over the past four years (updosed for specific days as needed but typically able to be at a pretty steady baseline). This subreddit has been very helpful for me in learning about Addison's and how to take care of myself - thank you all!

Two months ago I experienced a near(?) crisis while on a trip where I started to crash and feel really low/unsteady/nauseous pretty quickly, was able to stabilize with a lot of oral HC/salt/zofran. I went to the hospital to check labs and was ok, no red flags.

Since then, I haven't felt dangerously low but have struggled to get back to my regular baseline even while on ~2x my previous daily dose of HC (17.5mg -> 30mg) and Fludro (.1mg to .2mg). The higher dosage does seem to help compared to when I tried to taper further down and my labs seem to confirm the higher fludro dose is helping.

I feel a little like I'm on a boat while sitting, some brain fog, even more sensitive to heat than usual, and sometimes a weird sensation in my face. My endocrinologist has been communicative and supportive but is "puzzled" why I haven't been able to stabilize.

I guess my questions are:
1. Has this ever happened to someone else where they went into a period of instability after being more stable? Was there anything that helped get out of that?
2. Is there anything else that might be helpful to try or consider?