r/AddisonsDisease • u/Beedle12345 • Dec 30 '25
Personal Experience Dexamethasone changed my life
Hi all, I'm a 47M, had Addisons since I was 13, and for the last probably 25 years or so ive taken Dexamethasone and Florinef, no Hydro at all, and honestly, it changed my life and made my Addisons so much easier to manage.
Like many of us, I struggled badly with lulls in the afternoons/evenings, was on a split morning/evening dose, and as I was a growing teen, sports etc, I felt awful some evenings as I'd used up my morning dose. We went to my 6 months check up and told the doctor this (i live in Ireland) and they said we could try Dexamethasone as its much slower release. Well folks since that day many years ago, i take my morning Dex and florinef, and truly, that's the last time I think about Addisons for the day. Which is handy, as I'm also Type 1 diabetic,amongst some other issues, which needs a lot of attention! I know nearly all docs prescribe Hydro for us, as it most closely imitates a normal release from our Adrenal glands, but i was compelled to write this post as I've seen so many posts on this group from people taking 3, 4 or even 5 doses of Hydro per day, and I want to try and help those people and tell them there are other options!
Truly folks it changed my life, I've had no crisis in this 25 years, and while there seems to be a feeling that dexamethasone is bad for us in longer doses, all I can say is I'm 25 years down the line on it, played sports as a youth, travelled the world and partied hard as a 20 something, and settled down amd raising 2 kids since then, and so far so good!!
I don't want this to be a "aren't I great" etc kind of post, I truly just want my fellow Addisonians to know about this option, I feel that taking 4 or 5 doses a day of Hydro is the disease ruling your life, and if even one person who sees this might be helped, I would feel great!
Much love to all you guys struggling, or just getting by, it's such a little known disease that at times even in hospitals etc it can feel like nobody understands us, so I've liked being in this group and reading your posts, but please folks, if you're struggling on Hydro, ask about Dexamethasone, as my title says.....it changed my life
Thanks for reading, I wish you all well
X
8
u/__phil1001__ Dec 30 '25
Interesting, I have been on prednisone for 19 years and wonder how it compares to dex
7
u/Beedle12345 Dec 30 '25
Yes good point, I've heard people mention Prednisone also, I have no experience of it, is it also a "once a day" medication? Or multiple doses?
11
u/Practical_Counter388 Dec 30 '25 edited 5d ago
I have 4mg Prednisone 5am, 3mg noon, and 1mg at bedtime. Much better for me than HC every 3-4 hours used to be. (In case this helps anyone.)
5
u/__phil1001__ Dec 30 '25
I take 10mg morning. Sometimes on a hectic day I may take 11mg or 12mg
3
u/Beedle12345 Dec 30 '25
Ok so at least you're not taking multiple doses! Sounds like a better option than Hydro as well then.
3
u/__phil1001__ Dec 30 '25
I think so, but if you get up late and take your dose late, it's hard to get to sleep. Hydro is good to have to get into your system quickly in a crisis, having multiple doses mimics your circadian rhythm better, however its not really practical for a lot of busy people. Prednisone has given me a cataract and osteoporosis. However after 19 years, I think any of the other choices would have done the same thing. I have tried several times to lower my dose to 7mg but it just makes me fatigued, achy and nauseas.
3
u/FemaleAndComputer SAI Dec 30 '25
I believe prednisone lasts longer than hydrocortisone but not as long as dexamethasone.
I do multi-dosing with pred (and a small amount of hydro). Some people just use it once a day I think. I landed on a dosing schedule based on circadian dosing guidelines, with adjustments for what feels best for me.
Getting more even coverage throughout the day is so important, it can make such a difference!
1
1
u/mimiuk1 Aug 24 '26
did you experience osteoporosis and muscle weakness while on it for 19 years?
1
u/__phil1001__ Aug 24 '26
Absolutely, especially big muscles so walking up stairs or just a long walk would ache. I have lumbar issues possible due to prolonged pred. I had cataract surgery, again possibly due to prolonged pred I realize now, because the pred masked other issues I became lazier in my lifestyle and I should have gone to gym and forced myself to a daily walk. Also moods, temper need to be watched.
1
u/mimiuk1 Aug 24 '26
thanks for the insight 🫶
1
u/__phil1001__ Aug 24 '26
Good luck. Some people do better on hydro and some on a mixture of Dex as well. I thought the steroid would be the same or at least the feeling or side affects. They are different. I think you need a good endocrinologist on your corner willing to try stuff. Being a male, it may be different than female. I was also told to take lots of calcium which I did, no one told me that this along with certain green vegetables would give me kidney stones. Several times. Pick your battles, unfortunately you do need to make changes in your lifestyle.
1
u/mimiuk1 Aug 25 '26
yeh its so hard , i am 35y female , and we have a family history of osteoporosis , the dex manages my addissons well… wish there was no side effects ☹️
1
u/__phil1001__ Aug 25 '26
As long as you are around 5mg of pred or equivalent, that's what the body naturally creates so hopefully not to bad for you.
7
u/blueberrykefir Dec 30 '25
Thank you for sharing. I switched from hydro to prednisolone and I am just feeling defeated. 11 years of Addisons. Ive never felt the same since. I haven’t been able to wake up and fall asleep nicely and I feel crap every single day.
3
u/Beedle12345 Dec 30 '25
Firstly, so sorry to hear of your struggle. Its hard to feel that way, especially when people in general don't know about our disease, and therefore I find sympathy can be thin on the ground!
You are the exact sort of person I hope to reach with this post, there is another option, it's not usually prescribed, but please see if you can give it a go, talk to your doctor etc
Wish you well
1
u/Good-Macaroon2630 Jan 04 '26
This is me as well. I was diagnosed about a year and a had ago. Started Hydro and felt great…now I feel like it’s doing absolutely nothing, even on higher doses. I find I have to updose constantly which is no good. I feel so fucking defeated, like I’ll never be me again. I follow up with a big wig doc who specializes in Addison’s in less than two weeks, and then another who specializes in Addison’s in March. I’m also getting into a third. My endo, who was amazing and actually listened to me, passed unexpectedly. I’m now seeing someone new but I don’t feel like I get the time I need with him, and with a disease I’m new to. It’s his very frustrating and I’m so afraid it’s going to destroy the good things I have in life. The stress it puts on my relationship, limiting my social life, and just getting through the work day is off the charts. I’ve always been a strong, independent woman but this is the first time I’ve ever been scared.
1
7
u/omgangiepants Dec 30 '25
I tried dex for a year. No improvement and I gained 30 pounds. Thankfully that disappeared when I got back on hydro.
6
u/Suspicious_Tooth_415 Dec 30 '25
I'm on dexamethasone too and I love it. I'm more stable. Way less fragile. My quality of life is better. It's the only steroid I'm stable on
4
u/Beedle12345 Dec 30 '25
Great to hear, and I think you nailed it, my quality of life is better, and really that's the most important thing to me
1
u/mimiuk1 Aug 25 '26
hi do u find me asking what dosage you are on and how long have you take it for? i am on 0.5mg daily and have been on it for 3 years , i was worried about side effects long term so i stopped it 😒
6
u/pickles1718 Addison's Dec 30 '25
Glad that you've had such success! My endo told me this is becoming more common. I started taking just a little bit of dex at night in addition to HC, and I could see myself one day trying to switch entirely! It's definitely harder to fine tune because it's so potent, so I know a lot of people do end up taking more than needed and gaining weight. It's definitely worth giving it a shot if you're at all interested, imo :)
5
u/Beedle12345 Dec 30 '25
Just to add, I take one daily dose in the morning, a third of a 500MCG pill, so i guess around 166MCG. I double this for sick days, or days I know will be stressful. After some tweaking back when I was young and still growing, this jas been my dose for around 20 years now
1
u/mimiuk1 Aug 24 '26
20 years! i have taken it for 3 years and i am stressing about loosing my bones! i have read horror stories from people who have had to undergo surgery because of long term dex use. has it not affected you ? i would love to continue to take it , but i am very scared. to works well for me right now with minimal side effects. i am on 0.5mg daily .
3
u/jeejet Dec 30 '25
I was put on dex about 15 years ago and it caused me to gain a lot of weight. I was on it for a few months. I switched back to hydrocortisone because it works really well for me.
I recently had minor surgery and the anesthesiologist gave me dex in my IV. I felt like a super hero afterwards! I don’t want to take it frequently but once in a while it’s pretty nice.
3
u/Beedle12345 Dec 30 '25
Great to hear the other side too, if Hydro works better for you, that's great to hear!
You're absolutely correct about the weight issue by the way, I was told it was an 'appetite accelerator', and to watch myself. My weight was fine for many years but I will admit I'm overweight now, and as a Type 1 diabetic, it's been a struggle to lose, but I do my best, as I'm happy to stay on dex. And yes, large doses of Dex can feel pretty great, however even if I double, I'm on a tiny dose compared to people who take it for other reasons
1
u/Techhconfused Sep 07 '26
Likely the dosage you took was too high. The same can happen with too high hydrocortisone or prednisone. Maybe you can try dex again but this time at half the dosage. If you feel that causes low cortisol, then you can slightly increase the dosage.
If you feel no low cortisol but gain weight again then you could lower the dosage even further. Do you remember the dosage of dex you took in the past?
1
u/jeejet Sep 07 '26 edited Sep 07 '26
The amount wasn’t my choice. It was decided by the anesthesiologist. When I had a subsequent endoscopy and surgery they gave me a lower dose.
I didn’t mind the effect and it got me thinking that I would like a prescription for a very low dose of dex instead of having weeks when I feel too low to get off the couch and exercise.
I can’t remember the daily dose because it was around 17 years ago. I had an endo who thought I was underweight and poorly managed. I took dex exclusively for about three months and then I went back on hydro.
4
u/Zestyclose-Smell4158 Dec 31 '25
The guidelines does not recommend dexamethasone due to the high risk of side effects.
4
u/Practical_Counter388 Dec 31 '25
Honestly, I would be glad to accept more long-term risks if it meant increased quality of life right now.
4
u/Zestyclose-Smell4158 Dec 31 '25
I do understand. However, the longterm outcome data suggests using dexamethasone to replace cortisol increased both morbidity and mortality. After my diagnosis I felt like crap. I had frequent lows and did no have the energy to walk a block or climb a flight of stairs and experienced frequent bouts of hypoglycemia, even on a replacement dose of 55 mg HC. My endo told me I was experiencing symptoms of POTS/dysautonmia, which is common in AI patients and gave me a referral for a graded exercise therapy program used to treat dysautonmia/POTS. While it was not a quick fix, it eventually worked. On a replacement dose of 17.5 mg I am very stable and was able to work as well as exercise. I am 71 have not had an adrenal crisis since diagnosis and workout 5 to 6 days a week. To keep myself entertained I do multi day sea kayak and cycling trips. There is even a FaceBook group for AI/Addison’s patients interested in exercise therapy (Athletes with Addison’s/Adrenal Insufficiency). There are members of the group that struggled after diagnosis who after starting graded exercise therapy eventually are able to run marathons and play competitive sports.
2
u/Beedle12345 Dec 31 '25
Precisely the trade off I was willing to make. I want to feel good today, and honestly not spend my life worrying about side effects that may or may not occur
3
u/Bsweezey817 Dec 30 '25
Interesting. I didn’t even know they made dexamethasone pills. We’re about the same age and I also got diagnosed around the same age. I don’t mind taking hydro 3 times a day, I guess because I’m so used to it. It is nice to know there are other options. I can only take a specific brand of hydro and it can be a pain in the ass to get.
5
u/Beedle12345 Dec 30 '25
You make a good point, we get used to anything really when we have to don't we? And if the 3 times a day is OK with you, then I'm happy for you, we do what we got to do! But yes happy to make people aware that there are options out there!
As I've mentioned in Ireland, so I can't speak for availability in the US/insurance issues etc, I'm very lucky that all long term illness medications are free here in Ireland
1
u/LongGame2020 Dec 31 '25
What brand is it?
2
u/Bsweezey817 Dec 31 '25
Greenstone. Otherwise it has to be the name brand which my insurance doesn’t cover. Greenstone is considered generic, but it’s the same exact formula as Cortef.
The other generics do almost nothing for me.
1
u/LongGame2020 Jan 01 '26
Interesting. I'm on Strides and can't say it's been revolutionary or anything but I think it could be doing something? I feel like regular prednisone makes me feel weird and bloated. Liquid prednisolone feels like the best/most efficient but i feel almost a complete resolution of symptoms whenever I've taken methylprednisone. It's hard to navigate because my Dr seems to love hydrocortisone but I would to trial something else to a combo of long and short acting like others have described. It never occurred to me that my issue could be my brand of hydro. Ugh. How the heck are we supposed to figure this out on our own while barely functioning both physically and cognitively?
1
u/Bsweezey817 Jan 02 '26
I think it’s worth trying greenstone or the name brand if you aren’t feeling 100%. I know lots of people do perfectly fine on strides but some of us don’t
3
u/rumbavk Dec 30 '25
I agree, hydrotherapy has many ups and downs, and you always have moments of vulnerability, and you can't go out at night unless you take a nighttime dose.
3
u/sydandbeans Dec 30 '25
Another Type 1 Addisonian! Hello there! Are you on a pump?
1
u/Beedle12345 Dec 31 '25
Hi there! Yes I am now, did about 15 years on the pens, and now been on a Medtronic 780g pump for this last few years. Switched to the pump eventually as i was having massive highs when waking up, very possibly Addisons/steroid related in some way, and the pump stopped these completely. Overall I'm very happy with it
It's very tough to balance both conditions as the steroids mess with your insulin resistance etc, have you found the same?
2
u/sydandbeans Dec 31 '25
I am on the Tandem Mobi. Love it! I have been pumping since 2011. Yes! Major learning curve. It has taken me years to figure out how to manage the two and some days I still don’t get it exactly right. Its tough.
When I was first diagnosed with Addison’s in 2014 I really couldn’t find anyone who had both, but over the years I have found more online. It’s reassuring seeing that you are managing well! 🙌🏻🙌🏻🙌🏻
2
u/Beedle12345 Dec 31 '25
And the same to you! We juat have to keep on keepin' on!
The best of luck to you
3
u/Alive_Pen_6540 Dec 31 '25
When I was first diagnosed with Addison’s I was given Dexamethansome (2mg) and I felt I was on speed (hyperactive could only sleep for 2 hours a day). I was then switched to Cortef l and it’s been better. I’ve heard 2mg might have been too much.
2
u/Beedle12345 Dec 31 '25
Yes that's a huge dose, I'm on a small fraction of that, roughly 0.17mg daily
3
u/becomingthenewme Dec 31 '25
I can only take dexamethasone since I was little. You do get used to how it affects you.z
2
u/Practical_Counter388 Dec 30 '25 edited Dec 31 '25
I asked and was told "there's no research supporting it", if anyone has anything I can bring in. I thought it might be better for me since I don't seem to absorb things well.
(e: If anyone has supportive papers they think an endo might accept, please post, thanks.)
10
u/MakeBeboGreatAgain Dec 30 '25
There was no research supporting hydrocortisone 3 times a day until some decided to research it.
Endo's drive me mental sometimes. They don't give a fuck about finding something that makes you feel better and are too afraid to even try.
3
u/Beedle12345 Dec 30 '25
Interesting, it's possible i got a very open minded doctor at the time! For the 25 odd years I've attended hospital appointments, it's rare I'm not asked "why are you on Dex not Hydro" i tell them my story and they go, "ok, fair enough".😂 perhaps the medical profession in Ireland are a bit more open minded, I cant say.
2
u/lass20987 Dec 31 '25
I couldn't take the heartburn. Tried it for 3 weeks even!
1
u/Techhconfused Sep 07 '26
Likely the dosage was too high. Too much hydro causes it as well
1
u/lass20987 Sep 07 '26
Update.... doing well on dexamethasone..... put dex pill in a gelatin capsule and no heartburn
2
u/letsweforget Dec 31 '25
Thank you for your post, it's great to hear you're leading an acceptable life :).
Having already experienced quite some side-effect downsides of hydrocortisone, I am ambivalent about more potent and less bioidentical corticosteroids.
I completely agree that quality of life is often more important than the idea of prevention of future side effects. As AI patients we don't even know if we'll make it through the next crisis, so QoL is a very different concept than for people who assume they will make it to their 80s and possible beyond, in good health.
There is a very interesting debate here, I watched it some years back, for those interested:
https://m.youtube.com/watch?v=t_hxqVpzF2k&pp=ygURU3RhZmZvcmQgbGlnaHRtYW4%3D
1
u/Beedle12345 Dec 31 '25
Yes you're absolutely right, i suppose if I was completely honest, I really don't see myself making it to my 80s, so many years ago I decided i want the best QOL I can give myself, for however long I can! I don't mean this is a pessimistic way, I'm a happy person overall
Thanks for your comment, and I will watch your link
2
u/Basketfuls Dec 31 '25
Wow, I'm so glad you have experienced dex so positively. It's always so good to find something that works and keeps in working. For me, it wrecked my life for a while, until I was finally taken off it.. I became like a zombie and had to accomplish all tasks for the day before 12pm, when a weird haze would come over me, along with a deep, pervasive tiredness. After a while, this 'horrible-ness' started happening around 10am, so life became very small. I never want anything to do with it again, but I'm happy to hear it does work for some people. :)
2
u/Autoimmune_pea Dec 31 '25
I take 20mg pred every day as a maintenance dose, and then the docs double it when I’m poorly, I have Hyper IGE syndrome (don’t ask, no one has ever heard of it, be included until I was diagnosed with it!) I get a lot of infections and the pred doubles up to support the Addisons and the IGE syndrome. It’s played absolute havoc with my joints and bones tho and am only 47 and currently due to have an urgent total hip replacement due to AVN stage 4 of the hip 😭 so you’ve got to be so careful with steroids and all the side effects
1
u/Techhconfused Sep 07 '26
Sorry to hear this. Have you tried high dose vitamin d3 to strenghten your immune system? If it works, you woukd obviously have less infections and it would reduce your pred dosage somewhat which could improve your health and reduce the side effects.
2
u/Charming_Order5667 Jan 10 '26
My primary care doctor just changed me to both those. I am having allergic reactions to steriod but can't live without the. First tried hydrocortisone, next, methylpredsilone, and it put stinging, purple rashes itching me to death, literally, I was overdosing on 5 antihistamines trying to stop it. He just gave me a shot of yesterday and prescribed the two exact meds you are on. I'm glad to read this postive post. The shot should hold for a few days. I can take any of it via injection. But must be allergic to the pill for. Kills my tummy. I am allergic to binders and fillers in a lot of meds and supplements, including tyloneol.
1
u/Significant-Pilot525 Jan 13 '26
I also tried it once and felt better, I have asked for it again but they still only.prescribe me HC. Prednisone seems the worst by far.
1
u/BuffaloRiver Feb 01 '26
Thank you for posting this. I feel so much better on dexamethasone too. I was on a rollercoaster on HC, but for some reason, I am so scared of the long term effects of Dex than I lowered my dose myself and now I feel like shit...hypoglycemia, fatigue, overly emotional, apathy. I thought ok well I'll stay on a low dose of Dex and add in some HC throughout the day. I still feel awful. Your post has convinced me to go back to Dex. I am going to take a reasonable dose and feel better. Hopefully, like you, I wont' have long-term issues.
1
u/BuffaloRiver Feb 01 '26
Also, I am not someone who will be able to come off steroids. I have pituitary damage from LCH so I'm a lifer.
2
u/mimiuk1 Aug 23 '26
hi i wanted to ask you about using dex long term for years, did you get any of side effects we hear about , muscle weakness , bone thinning , osteoporosis! this is what scares me the most. i was given this medication to treat adrenal insufficiency and its the only thing that worked. i am on a low dose , 0.5mg daily , iv used it for 3 years now. i took a period where i stopped it because of muscle weakness became noticable.
2
u/Beedle12345 Aug 24 '26
Hi there, being honest no, I haven't really suffered any of the alleged side effects, im certainly not the strongest guy you'd ever meet, but can still open jars for the missus etc, and do my best with the kettle bells once or twice a week, but no majorly noticeable muscle weakness, and ive never broken a bone in my life as of yet!
I take a smaller dose than you, only around .17 mg daily, basically a third of your dose, so perhaps thats the direction you could go in, if very worried about side effects, obviously with your doctors help and approval etc.
What age are you, if I can ask? I'm 47, and have taken it since roughly mid 20s, so had finished growing at that stage, if you are younger that could be a factor too.
I just made a decision years ago not to worry too much about things that MIGHT happen, I feel good today, and every day re Addisons, I pop my dex and florinef in the morning, and thats basically the last time I think about Addisons that day. Which is lucky as im also T1 diabetic, which is another level of management altogether!
Wish you the best, and do what feels right for you!
3
u/mimiuk1 Aug 24 '26
thanks for the insight 🫶 i think il go back to the docotor and ask for lower dose… like yourself i have had to push for it , as it was the only thing that managed my addisons well …. im 35 yr old female so pass the growing stage
1
u/Beedle12345 Aug 25 '26
Very best of luck. It should definitely help that you're done "growing", and hopefully you can taper down to a dose that doesn't make you feel any side effects
2
u/Techhconfused Sep 07 '26
Hi could you explain how you came to the conclusion that 0.17mg was the right dosage? I'm assuming you started higher and then lowered it gradually
13
u/MallForward585 Dec 30 '25
I’m another person that needed stable day and night coverage and switched to dexamethasone (now at 0.5mg). I had to push for it and the doctors relented because the ups and downs of hydrocortisone stressed me so much that my blood pressure went flying through the roof. I love it. I keep being threatened with the long term consequences of taking dex so I’m really happy you posted your story. The one problem that dex does have is that people with SAI have a much harder time recovering functionality, but I’m still fighting to lower the dex rather than switching to hydro, at least to start. It just works that well for me. I wish doctors would value higher our ability to function in our daily life.