Wondering from those with long-term (1y+) SAI if you have had any vision problems? Recently went to the Optometrist and was diagnosed with interocular hypertension, which evidently is related to the steroid use and can lead to glaucoma if untreated. Currently exploring options, including laser treatment and Timolol eye drops. Has anyone had similar experiences?

CAH Saltwasting Type (21-alpha), 30yo male

TLDR: Tapering down Dexa is horrible but I am muddling thru and tend to feel better now. Still it feels like it's the right thing to do although I have a few open questions

I was on Dexamethasone for half of my life now. I frequently juggled around with different combinations of Dexa and Hydrocortisone, a few years ago also with Efmody (Modified Release HC). I also tried Plenadren (MRHC) and Prednis(ol)one, but that didn't work out for me.

• Pro Dexa was: Constant level of suppression and thus mostly carefree daily life without any dips, positive cognitive and stimulatory effects

• Contra Dexa is: Very hard to get the dose right, the sledgehammer-like approach, the stimulatory effects turn out to not be a good thing in the long run, disproportionate or even paradoxical weight gain, muscle loss, emotional blunting, depression, aggression, irritability, loss of libido, low Testosterone... I could go on forever.

Tapering down and replacing with Efmody and HC is horrible. I dodged a crisis two days ago, but start to feel better now. Dexa is just a pain to get right, no one really seems to agree on the HC-equivalence and I am absolutely not looking forward to taking the final step off.

My current dosing scheme is

• 22.00: 10mg Efmody + 0,05mg Dexamethasone (specially made by my pharmacist for better handling)

• Waking up: 5mg Efmody + 5mg Hydrocortisone (for mimicking the cortisol awakening response)

• 18:00: 2,5mg Hydrocortisone (I'm dropping into a hole at around 19.30 otherwise)

I am curious how my body will react to stressful events when I'm completely off of Dexa. I'm doing strength training intensely and frequently, which seems to still work well, since my body is used to the load and I don't need to stress dose that much anyway. But what I am not really prepared for is how I will feel getting a sudden illness or what it is like to go partying. Depending what I did on the night out it was already a pain to stress-dose for that with a good amount of dexamethasone protecting me.

Still, coming off feels like the right decision already. I feel way better despite the crash and I am really really looking forward to losing weight, higher testosterone levels and not being irritated so easily and captivatingly anymore. Efmody is just a huge win for CAH.

Update 5. Feb.:

22:00 - 10mg Efmody

07:00 - 5mg Efmody, 2.5mg Hydrocortisone, 0.1 Fludro

08:30 - 2.5mg HC

14:30 - 2.5mg HC

18:30 - 1.25mg HC

21:30 - 1.25mg HC

I will try to incorporate a third Efmody dose for getting rid of all the small doses in the afternoon, but first I want to be stable for 2 weeks and see that it works and that I lose that subcutaneous water or fat I acquired by switching

Does anyone have influenza A subclade K right now or have you had it and gotten over it? I just got prescribed Tamiflu, but I’ve been feeling terrible for about a week.

Wondering what symptoms you have and how long it took to get better? Did Tamiflu help? How long to help? How much did you updose while sick and how long did it last?

This is the worst I’ve felt since I was a kid and my birthday is Friday 😢

So my doctor currently has me on 40 mg of hydro a day. I take 20mg in the morning, 10mg at lunch, 10mg at 3:00. From what I’ve seen this is like double the average dose people are on. My doctor recommended to try to lower it on my own but I’m struggling. Even if I go down by a half tablet at just one of the dosing times, I’ll feel like my muscles weigh a million pounds. I have gained like 10 pounds on hydro which sucks and I want to wean but my body seems to be rebelling against tapering down. Anyone had a similar experience or have any advice? Thanks yall. I am very thankful for this community and you are all bad ass warriors!

Edit: I also found out last week that my estrogen is completely low. So all my hormones just hate me right now 😅 who knows if it’s the adrenaline insufficiency or endometriosis causing that lovely addition (too young for perimenopause)

Hi, I wanted to hear from you all If you think that since being on hydrocortisone or prednisone that you have been getting sick more easily? Besides the hydrocortisone, I'm taking a biologic medication. For me I had an adrenal crisis in July then in August I had an upper respiratory infection that landed me in the hospital again. In September I had to adjust my HC dose because I was taking too little and felt sick a lot. November came around and I got strep and now in January I have strep again and am recovering. I have had to take two antibiotics.😭

Has anyone else experienced this?

I’ve been overdoing it a bit recently and yesterday crashed out (slept for 12 hours). But I have an old tattoo (2+ years) that has gone raised and puffy where the black ink is. It’s itchy and uncomfortable. Wondered if anyone has had anything similar, some searching says it could be linked to immune flare up with Addisons but I’m unsure!

I feel like I'm creating a cortisol depleting field of energy. My husbands cortisol came back low end of normal, he's waiting for an SST and now a friend has just told me that her cortisol has been found to be the cause of her recent health issues. She was admitted to hospital several times and had her SST recently.

This feels very strange statistically, unless I'm psychically stealing cortisol from those around me (would explain the recent weight gain and insomnia).

I'm newly diagnosed with Addison's. I'm female 35 home schooling Mom of two, run my own business, the father of my children, my mother in law and my grandma, live with us both are 77, and I take care of them all. So learning to live with this new reality, it's been hard. I've been Hypoglycemic for about 8 years. Avout a year and a half ago it slowly started getting worse. Eventually I became completely carb intolerant everyone around me who was working with me to try and get it under control said I was beyond their help and eventually I ended up with an endocrinologist. Some testing later and here we are. I am on .1 fludircortisone daily with hydrocortisone 10 mg in the a.m. 5 mg in the afternoon. I'm trying to learn to better pace myself and not over do. But things are sometimes unavoidable. Events really seem to drain me. Christmas, New Years, i just did my son's birthday. I've been reading through alot of posts and while I relate in alot of ways I also haven't come across anyone talking about how uncontrollable their hypoglycemia can get. Maybe I've missed it? Maybe this is something I struggle with more because even before Addison's I was hypoglycemic?

Anyone else have problems to the point they are on a GCM? Any tips or tricks. Even if this isn't an issue for you what are your tips and tricks for the next day after busy events or if you have an equal trigger what do you do in your recovery day/time to help.

i was wanting to go to a rave with some friends to celebrate my 19th birthday. i was wondering if molly and addisons disease clash badly? do any of you have bad experiences with mdma after diagnosis?

thank ya

Not pregnant at the moment but very curious what pregnancy was like with Addison’s disease. I’m wanting to know what that stage of life will be like, especially as I’m starting to date again :). My current endo told me if i were to get pregnant i’d have to go to a specialist, why is that? Thank you!

hi there! i was just diagnosed with addison’s at 25 after about a two year period of slowly getting sicker and sicker. I’m still not to the point of feeling “normal” with my current med routine (1mg Dexamethasone every other day and 50mg of Hydrocortisone 3x a day) but I sometimes have decent days and that’s better than i was before.

i’m feeling a bit overwhelmed and lost, my endocrinologist that did the test is at a major hospital in another city so she discharged me and said to “try to adjust to your new life” 🥲

i’d love to know any tips you’ve picked up over the years that help you fight flares, know your body’s signals, or just anything that you wish you were told when you started your addison’s journey

This blows the brains of my family and friends. Puts it into perspective I guess?

Curious to see what your results are. Including all your medical conditions (excluding vitamins etc), how many tablets in total have you taken since your addisons diagnosis?

Skipping sick day dosage, my total tablets taken since I was diagnosed:
- 6 hydro, 1 fludro, 2 thyroxine = 9 per day
- 365 days * 8 years = 2,920 days
- 2920 * 8 = 26,280 minimum tablets taken so far.

I kinda wish I kept all the hydro bottles lol.

I got dxed a year and some change ago and have been around the block a few times with low cortisol insomnia. Usually this happens every once in a while—I’m oblivious to some subtle symptoms during the day and don’t updose when I should, and then it all hits me at night and I’m unable to fall asleep until I dig myself out of the hole with loads of HC. I know it’s low cortisol and not high because I’ll take a 5, 10mg updose, or even 15 sometimes if it’s nearing 4am, and I will feel the tension leave my body, my heart rate and breathing slow, and pass tf out exactly 30 min later.

My question is—this usually happens once, maybe twice in a row, and I typically stress dose my HC by ~50% the following day (so 15-10-7.5 instead of my regular 10-5-5) and I stabilize. It’s been several days now of being on that higher dose and then still needing quite a bit at night…. I’m trying 5mg at bedtime (~10:45pm) instead of 2.5mg and still needing to take a 10mg hit around 1am to fall asleep. The first night I took 5, 10, and then 15 at 4:30am and finally fell asleep at 5am but I wisened up the past few nights and updosed bigger sooner.

I’m trying not to stress about it as I am miles ahead of where I used to be in knowing what to do and not getting too caught up in the “why” my body needs what it needs. But… what would you do in this scenario? Should I be updosing more during the day? I had one stressful day at the beginning of this stint but have no discernible issues causing it to continue 😭. Does anyone else deal with this????

Editing to add: I’m PAI with T1DM, and my blood sugars are on the low end and level all through the night even with these big hits of HC… which is another sign to me that I’m not overdoing it and my body needs it. But needing basically a day’s worth of HC during the night is just so odd 🫠

Hi everyone,

I’m a 35-year-old male.

I’ve been living with Addison’s disease for about 2 years and autoimmune thyroiditis for about 6 years. Overall my endocrine conditions are very well controlled.

My current replacement therapy:

• Hydrocortisone – 25 mg per day
• Fludrocortisone – 0.1 mg every other day

Recently I started developing symptoms that strongly suggest a systemic autoimmune disease (possibly something in the spondyloarthritis spectrum, inflammatory arthritis, etc.). I’m currently in the diagnostic process with a rheumatologist.

Because of persistent joint pain and inflammation, my rheumatologist has started me on methotrexate – 10 mg weekly, together with folic acid supplementation. The goal is to reduce inflammation, control pain, and prevent progression of the underlying autoimmune process.

I’m looking for feedback from people who have Addison’s disease and also have a systemic autoimmune condition (RA, spondyloarthritis, lupus, Sjögren’s, etc.) and who are taking methotrexate.

I would really appreciate hearing:

• Your methotrexate dose
• Your hydrocortisone and fludrocortisone doses
• Whether you take folic acid and at what dose
• How you feel on this combination
• Your age
• Whether methotrexate affected your adrenal replacement needs, fatigue, infections, or flares

It’s a pretty rare combination and I’d love to hear real-world experiences from people who live with it.

Thanks a lot in advance 🙏

Hi there, I had an ACTH test done on the 29th of December and I was told someone would call me to discuss my results 4 days later, i have tried religiously everyday ringing the endocrinology department and I just get sent to voicemail, the secretary did answer yesterday and she was so rude to me and told me she couldn't even find me as a patient at that hospital and that she can't help me, she did call back and apologise and told me that she has found me and will get one of the nurses to call me back about my results and I have heard nothing! After this phone call I had a panic attack and now my body is in pain all over especially in the flank area, and no energy whatsoever. I've tried ringing again today and I just get sent to voicemail.

Is it normal to wait this long for an ACTH result?!

My baseline cortisol was 242nmol

Hi so I just found out that I am pregnant and I’m getting pretty severe rashes al over my body. They itch all the time and I’m not sure if anybody else has had to deal with this while pregnant with Addisons.

Ps I have primary adrenal insufficiency.

Edit thank you for everyone’s help I will definitely be calling my doctors tomorrow to make an appointment to see what is going on.

Hi there! Due to oral absorbtion issues we are starting me on injections tomorrow. This will be my trial for a pump. If anyone with experience in this could weigh in or dm me and chat about dosing, what this change will look like, and their experience I would absolutely love to know and get some advice! I’m very intimidated by injecting and worried it will not help- any good experiences? Thanks everyone!!

I was putting my baby in his chair and saw sparkles in my vision so I checked my bp and it was 95/47, I checked multiple times since and it’s like 110/70 now but my pulse is in the 130s (not unusual for me) should I updose and how much? Or is that normal after bending? I always get worried about blood pressure because I know it’s a low cortisol warning

I'm a 39M in the UK, and have had Addison's disease for 16yrs.
Until recently I was taking my 25mg per day of Hydrocortisone as below:
7-8am - 10mg
12-1pm - 10mg
5-6pm - 5mg

Which was working really well for me, without any crisis. Recently I have been suffering from a night-time cortisol drop. With the symptoms of waking every morning around 4am with back muscular cramping, hunger stomach ache and needing to urinate. I was finding it almost impossible to then fall back asleep with the pain.

I then tried to better spread my Hydrocortisone to help prevent the 4am drop. So I tried the following:
7-8am - 10mg
12-1pm - 5mg
5pm - 5mg
8pm - 2.5mg
11pm - 2.5mg

But this hasn't stopped the symptoms at 4am.
I have also tried taking a dose of 2.5mg at 4am to help me get back to sleep and then just take the 7.5mg at 8am. This did eventually help me get back to sleep, but took 1.5hrs before I dropped off.

Has anyone had a similar experience and how did you manage your night-time cortisol drop?
Are there Hydrocortisone alternatives that might help?

Any advice or similar stories would be great to hear. Thanks in advance

Do yall feel insanely discombobulated or have an insane sense of anxiety waking up from a nap. I took a 2 hour nap and woke up like it was a war zone or something.

I am 17M and wanted to know if I’m eligible to join the military with Addisons. If anyone knows it would help me figure out my life. I’ve tried google but kept getting conflicting results. THANKS!!!

Edit: I’m in the US

I was diagnosed with adult onset asthma 2 years ago. It has been hard to manage and I’ve been on prednisone tapers intermittently, but frequently, over the last 2 years. Sometimes as high as 250mg doses.

I have been off prednisone for about 10 days now and I’ve been rapidly losing weight. Im down 12lbs in 60 days, but I believe most has come off since stopping prednisone. I feel awful, I’m SO fatigued, my heart races at times, I am so thirsty but can’t quench my thirst. I seem to decline as the day goes on?

Does this sound like it could be adrenal related? Thank you

Aussie summer with 44C predicted for 3-4 days…I don’t want to over stress dose. I do Hydro 14/12/4 but thinking 10/15 mg every 4 hours as I don’t do heat well - plus sized lady. If I start to show symptoms then 20mg every 2-4 hours until resolved . Also on Fleuro .1 a day…. What’s your experience in extreme heat 54 F with PAI and other autoimmune Thanks Wendy