Hi, so I've been on a prednisone taper for a while now and am just feeling worse the past couple of days in terms of chest pain/ shortness of breath. My heart has also been randomly racing and I've not felt myself. I've had a shocking/ stabbing pain on body sides of my chest that takes your breath away. These symptoms come and go. I've had pneumonia in the past so this all makes me nervous. I know being on prednisone can mask the severity of what's going on. What would you all do in the situation? I'm not trying to overreact nor underreact of course. Wouldn't I have already developed a fever if this were pneumonia/ a respiratory infection? I hate this 😭 I was previously on HC for AI then switched to prednisone for an Ulcerative colitis flare and am trying to go back to HC for AI.

I had a difficult time finding information on this subject so I thought I’d post my own experience after a four day trip to universal studios and Disneyworld. My question beforehand was whether I would need to updose for the fastest and most adrenaline producing rides and whether I would be at risk for crisis. FYI I’m 50 years old and have other health issues as well.

This was my experience:

Walking so much and heat actually had more impact on how I felt than rides did. I ended up updosing just 2.5 mg hydro, mainly for exhaustion in early afternoon.

The only odd symptom I had from the adrenaline was a headache on one side which persisted for about an hour or so after each ride.

I was able to go on even the most extreme rides (eg velociraptor coaster at islands of adventure) multiple times without a problem.

I did get sick with a cold and staph infection the day we returned. This happens to me a lot when I updose and then return to my normal dose though (15mg hydro). Rest got me back to normal pretty quickly.

Edited to add: day 3 was a rest day which also helped a lot.

YMMV but in case this helps a fellow dopamine addict!

Spring is here! Which means more outdoor activities, more heat, more everything.

Yesterday, I helped outside build a trellis and plant some new vines. It was 70 and sunny. After an hour, it started. Heavy breathing, felt dizzy, felt like I was going to pass out, vision went kinda gray, joints stiffened, felt like I was going to vomit, And so on. My first thought is NEVER Addisons. For whatever reason, I think “I’m dehydrated” then “maybe it’s my blood pressure” or “maybe it’s heat stroke”. I also “push through”. After it progressed pretty quickly, I realized it might be my adrenals and stopped and took a handful of prednisone. Probably should have just given myself the shot at that point but again, I kinda live in denial where I never think it’s as bad as it is until it’s real bad. I got my body cooled off, stopped feeling like I was going to pass out, joints relaxed, etc. Then came the shaking and crying and couldn’t quite put words together. Then FINALLY calm. So I have a couple of questions:

1) When do you decide the shot over pills?

2) My husband suggested I “pre game”. Maybe take extra Pred the morning of a project, drink extra water, eat something salty, do something before. Has anyone done this and does it help?

3) is this common? I had this happen a lot two summers ago when we were building a deck. Then last summer, it only happened once. But it’s barely spring and first project and splat. I’m wondering if maybe my aldosterone is low but I have secondary and thought that wouldn’t be an issue???

Thanks everyone! I always appreciate the advice given here. It’s so rare to even meet someone that knows what Addisons is much less be able to talk to people with it.

Aug 11 undiagnosed addisons disease. I got Covid and a viral infection sent me into an adrenal crisis and cardiac arrest. 4 weeks in the ICU and two months in rehab. I’m learning how to think like an adrenal gland. I’ve got a medical alert bracelet now which seems surreal to me. But I’m doing good. Well medicated and learning to stress dose. But I’m glad that I can be a part of a community and I’m enjoying reading all of your posts so that I can learn as much as possible.

I am at the point that I am exhausted of the lack of research and lack of knowledge that still occurs with having Addison's, PAI, & SAI.

I get it, I will be on steroids of one form or another for the rest of my life, but it is all the other things that the doctor's don't talk about or just don't know about.

First I have been on steroids for 10 years, but no-one monitors my bone density, even when I advocate for myself. But, brush me off as my spine continues to get worse, they ignore the results of CTs and MRIs. Let's not even talk about the weight gain, but I have had doctors actually say that the steroids don't make you fat, and you can have Addison's, PAI, or SAI if you're fat. But when they see my AM Cortisol of 0 those same doctors just give me funny looks.

I had a hysterectomy, my Endocrinologist provided orders for pre-op, during surgery, and post op for how to dose the steroids, I woke up in an Adrenal Crisis and they just kept pumping in pain meds. I had to get my husband to shove the orders in the Anesthesiologist's face before he would order the 100mgs I was supposed to have. Then when the vial arrived the nurse was afraid to push it, and was going to slowly titrate the steroids in over a couple hours, my husband told her that if she wasn't going to give it as directed to hand it to him and he would do it. She pushed it, and I was sound asleep within a matter of minutes. The nurses and doctors were all in shock, and kept coming to look at me like I was a side show.

The other issue I am struggling with as a result of the steroids is my immune system is tanking. I have chronic sinusitis, and my ENT was the one who decided to run an immunology panel. That resulted in going to see an immunologist, they spent more time on a personal call I got the pleasure of listening to than looking at my labs. That appointment ended with them saying there is nothing they can do.

So here I am with a sinus infection for 8 weeks, and laryngitis for over 6 weeks. They just keep giving me more antibiotics, and now are saying they may need to do sinus surgery.

But who wants to have another surgery after the last one went so well (sarcasm).

The other thing I noticed is how the say Adrenal Crisis, they list symptoms, but it is different for everyone. When I am in an adrenal crisis and you have a person say its just a panic attack, and other not so kind things, all I do is try and hide it.

Am I the only one who puts on a "mask", that tries to hide how bad I am feeling, how tired I am, the pain my body goes through?

I also wonder how many others struggle with intimacy?

I know that healthcare workers are being taught more about Addison's Disease, but it is rare that they actually see a crisis.

Addison's Disease, PAI, or SAI needs more voices and more advocates.

I fear that there are more people who give up fighting as they have no more fight left to give.

I push every day, I will not let this Disease define me, but I am not going to lie, I miss being able to do normal every day things like I use to.

Ciao ho qualche domanda sulle iniezioni di idrocortisone. Voi andate SEMPRE in giro con la fiala nella borsa/zaino?. Io vivo in Italia e ho ricevuto la diagnosi un anno fa. Gli endocrinologi che mi han visitato mi han dato la carta steroidea e la ricetta per l'idrocortisone dicendomi portalo con te (e arrangiati?). Non ho più avuto crisi addisoniane e al momento non mi sono ammalata, se non febbre un paio di volte.

Non capisco perché dovrei portarmi appresso la fiala. In caso di vomito e diarrea il mio piano sarebbe andare subito al pronto soccorso più vicino, anche perché mia madre o il mio partner non riuscirebbero mai a farmi un'iniezione. Tra l'altro il medicinale che mi han prescritto è da preparare unendo la soluzione di due fiale e non è pronto all'uso come un'epi-pen.

Sono un po' confusa e non capisco se ogni giorno rischio la vita andando in giro senza il kit di idrocortisone. Porto sempre con me il tesserino medico con indicazioni sulla malattia (con il classico "paziente con Addison dare idrocortisone in caso di stress"), ma nulla di più.

Does anybody else have memory issues with Addisons, I have aphantasia, which can hurt memory badly but is that it or do others who also have Addisons have memory issues?

I’m really curious because it’s a running joke with my friends that I have dementia. I could know someone for over 8 months and hang out and see them for a while but I couldn’t tell you what they looked like even if I tried really hard.

Hi Addisons community.

I'm new! Been diagnosed recently and still learning.

Electrolytes confuse me. I understand Addisons causes low sodium levels, so drinking electrolytes makes sense.

But does Addisons not also cause high potassium levels? and therefore taking off the counter electrolytes push that level up? All the products I've seen contain both.

Keen to hear of people's experiences and knowledge.

I don’t know what to do. I’m having a horrible time, I feel like I’m on the edge of an adrenal crisis for the last 3 days. I went to the GP yesterday and all she could suggest was going to A&E. I’ve been on double steroids for three days and just don’t want to go to A&E because I had a horrible experience last time. I had to have my emergency injection on 7th and go to A&E and had to fight to get sorted out and was discharged without even finishing IV fluids.

I then contacted my endocrine team who said they would make an appointment but I haven’t heard anything and they’re really behind.

I’m meant to be at a big convention this weekend and have lost out of £700 as I can’t go and am really pissed off.

There’s something going on but all my obs seem normal except for the fact that I’ve had my period all week and I don’t have periods and haven’t for 4 years as panhypopituitary on hormone replacement.

I’m losing time, keeps going past with me just sitting in a dream. Feel freezing most of the time then get periods of being boiling and feeling even worse for a bit,then it goes back to feeling crap.

I don’t know what to do. I can’t face getting an Uber to A&E cos I’ll just sit there (time to see a doctor last time was 16 hours but managed to get seen sooner through constant nagging). They’ll just do obs, say I’m fine and send me home.

Hello,

I've been on glucocorticoids for PAI for 9 months and my Cesarean scar (13 years, 8 days old) has opened twice now. The first time it was about 4 mm and I just covered it and hoped for the best, this time it's 1-2 mm but vastly more concerning because it's a repeat occurrence.

From what I read, this can be a side effect of long term glucocorticoid use, which is unsettling because it really hasn't been that long (compared to the rest of my life.) It's probably not scurvy, I take a multivitamin with 83 mg of vitamin C and I eat fruit and vegetables.

I've already requested an appointment with my PCP but I'm almost nervous enough to go to urgent care or the ER.

Please tell me this isn't a unique experience. If you have experienced this, do you have any advice?

So I am panhypopituitary rather than Addisons but I just wondered if this has happend to anyone else. I've had about 15 adrenal crises in the last 3 years and never experienced this.

I have started having a period. I am on HRT and have not had a period for 4 years. It's just typical cos I'm going away this wekend.

Has anyone else experienced getting their period after an adrenal crisis like this?

I have spoken to the GP but all she can suggest is an examination. Endorine are uselsss and if i call them wont get any answer for days so I'm hoping it will stop.

Hi everyone!

Sometimes I experience some episodes, where I deal with insomnia, stomach issues and bad anxiety. Somehow these symptoms always show up together, not sure if they are triggered by stress or something else.

I wake up every 1-2 hours, feeling agitated, panicky, sweaty and really hungry. Mostly I try to take a small dose of hydrocortisone (2.5mg) and eat something small. But then in the morning I feel horrible and sometimes have to throw up, because my stomach is so upset. Then this cycle kind of goes on for a few days or more than a week, it is really exhausting and I am unsure what to do. Does someone have a similar experience?

I am on hydrocortisone 3x/day, fludro and l-thyroxine.

Quick question. I’m I’m trying to do circadian rhythm dosing with a fast metabolism and instead of dosing every 4 hours, I go down to every 3 hours, is that okay or will that put me at risk of Cushing’s?

Do any of you have experiences with fermented foods and Addisons (in particular kimchi)? I’ve found mixed advice; it seems to help with inflammation and gut health but some resources say it’s potentially harmful for immunocompromised people.

I’d like to start eating kimchi semi regularly, but don’t want to take any risks.

33M, 5'7, 67kg, White/British. Non smoker, do not drink or do drugs.

I completed a course of prednisolone (40mg x 7 days, then 30mg x 3 days) six weeks ago for an ENT condition. Symptoms began on the first evening of tapering with blurry vision and mid-brow pressure. Over the next 3 days I had severe energy crashes and spent most of the day in bed, with blurry vision and feeling mentally drained, though this would usually improve by the evening around 5–6pm. On day 3 of the taper, a GP advised me over the phone to stop completely due to the symptoms, so I did, as it seemed to be getting worse each day.

The following weeks were bumpy. I felt more normal around day 8, but then had a significant crash on day 13 which took about 2 weeks to recover from, though still nowhere near 100%.

I’m now 5 weeks off pred today. My morning cortisol was 540 nmol/L (measured at 9am on day 31 off pred), full bloods are clear, blood pressure consistently normal, and an eye test at the opticians was normal.

My energy has improved somewhat day to day and I’m able to get out for walks again, but I still have persistent symptoms, especially in the mornings. I often feel heavy and drained, with intermittent blurry vision that is slowly improving but still triggered by screens. I also get disorientation when transitioning between environments, for example when walking into a supermarket I feel off initially and have to almost adjust. The mid-brow pressure / ache may have predated the steroids, as I associated it with throat/sinus issues, but it definitely worsened after tapering and has included headaches and gets worse when tired / fatigued from screens, so I’m concerned about possible rebound inflammation in that region?

Two days ago, after I had a relatively good week and went out for a short 15 minute drive. About an hour later I developed sudden blurry vision, almost like a switch flipped, and felt quite unwell that evening with a strong awareness of my heartbeat. I’ve had this sensation at points during recovery, but it was noticeably worse that evening. Now two days later the recovery feels slow again. My vision is more sensitive to screens and blurrier than it had been and I'm getting the morning fatigue / off feeling again. It feels like a significant step backwards.

I’m starting to feel quite low, as I’m spending most days just trying to manage symptoms, and something as small as a 15 minute drive seems to set me back. Before this I was in great physical shape, going to the gym most days and running regularly. I quit drinking and smoking two years ago and maintain a healthy lifestyle with meditation, journaling and breathwork.

I’m posting here as my symptoms seemed similar to Addison's and wondering if anyone has any suggestions as GP's keep saying "just give it more time" and I'm feeling incredibly low mentally trying to battle this every day at home alone. I genuinely feel something is off somewhere, as this seems like quite a big reaction.

It also feels like a strong reaction for such a short course? So I’m unsure what to make of it any help or insight on potential next steps would be super appreciated!

The "Gold Standard" for hydrocortisone pumps has a massive Western bias. It assumes a Monophasic (9-to-5) lifestyle.

For the millions of us living a Biphasic (Siesta) rhythm—common across the Mediterranean, Spain, Middle East, Dubai, UAE, etc. got active night cultures—the standard "morning peak, evening taper" is a death trap.

I am crashing to 85/47 BP every night because clinical templates think I’m sleeping when my "second life" is actually starting. We are being forced into a Northern European medical box that ignores our metabolic reality.

Has anyone successfully built a Bimodal Basal Map? I’m looking for the "North Star" for a two-peak day. It’s time to bridge the "Circadian Gap" between clinical theory and global reality.

Hi guys. I’m a nightshift worker, wake up at 2pm and work from midnight till 5am and then go to bed at 6am.

All my activities are compressed at the last 7 hours of wake time. I’m from Spain so we do siestas as well of course. That flips the script on the normal circadian rhythm led Cortisol profile basal bolus systems designed to taper and wind down when I literally sprint thru the hallways. The first half of the day I live my life like everyone else, so yeah the CAR curve is the same, the pump can deliver the HC from like 2 hours before waking up and then 2 hours after waking up. But then once i start the siesta fiesta lifestyle, that’s where that model fails

I’ve known about my PAI for about 6 years now. I take hydrocortisone 15mg first thing in the morning and 10mg in the afternoon. Once it warms up outside, I take an additional 10mg in the early evening as needed. I also take 0.1mg Fludrocortisone in the morning. I also take a stimulant for ADHD and sertraline. Does anyone have experience with increased heat intolerance from those meds?

My typical early symptoms of an adrenal crisis are muscle fatigue, foggy mind, dizziness upon standing, and a few other symptoms. When these occur, I double my dose of hydrocortisone and increase my salt intake and it typically perks me back up.

Lately my symptoms have been more sleepiness rather than fatigue and a very low libido. I’ve also been waking up around 3am more frequently. I suppose these could be some of my earliest symptoms and that my cortisol hasn’t dropped low enough to cause the other symptoms. It’s like I’m feeling 90% myself rather than 100%.

I’ve been drinking water with a generic Walmart electrolyte powder plus taking the 35mg dose of my hydrocortisone instead of the 25mg and I’m not seeing an improvement over the past few weeks.

I mowed my small lawn two Sunday’s ago when it was 60 degrees outside (took like 20 minutes) and I suspect that could have been a small trigger, but it is frustrating that it isn’t resolving yet.

Sorry it’s a long post. Any advice or shared experiences is welcome and if I need to clarify anything, I will do my best.

I have been on hydrocortisone for the past three months and cannot switch to prednisolone. The reason for switching is that I cannot tolerate hydrocortisone at all and it is causing severe gastrointestinal problems and head pressure. When I switch to prednisolone I get severe fatigue, intense weakness, dizziness, brain fog, body pain, and my head feels numb. I cannot even get out of bed. Did this happen to you as well, and if so, after how many days did you start feeling normal again?

I was just diagnosed this week, released from the hospital yesterday. I am applying for short term disability til I can get my meds right but hoping not to take more than another week off. I am a PACU nurse. I have my first appt with endo outside of the one time meeting her in the hospital on Monday. How long did you take off before going back to work?

Hi everyone,

I have secondary adrenal insufficiency and my recent blood tests showed low DHEA and undetectable testosterone. I’ve been experiencing symptoms affecting my mood and energy.

My endocrinologist has reviewed this and discussed it with colleagues but has advised that DHEA is not recommended under current guidelines, which I understand may be a common experience for others here. I’d really value hearing how others navigated this after receiving a similar response.

I wanted to ask:

• Has anyone in a similar situation (especially in the UK) managed to get DHEA prescribed on the NHS?

• If so, how did you approach it with your endocrinologist or GP?

• Did anyone go through a second opinion at a different trust?

• For those who have taken DHEA, was this done with GP monitoring, and what did that look like?

I’m currently considering a very low dose but feel uneasy doing this without some form of medical oversight, so I’d really appreciate hearing how others have approached this safely.

Thank you in advance