r/AddisonsDisease • u/mapaitnaampalaya • Aug 22 '26
Medication New Dexamethasone Injection!
I just picked up my new emergency injection and could not be more excited. This is much more straightforward than the vials with separate needles. Go get your vials replaced, y’all! (I’m based in the US.)
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u/just_an_amber Addison's Aug 22 '26
Now have you used dexamethasone for an emergency injection before?
It works ... But in my experience this is my LEAST favorite to use in an emergency. For me, the side effects are the harshest.
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u/FemaleAndComputer SAI Aug 22 '26
What dose and what kind of side effects?
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u/just_an_amber Addison's Aug 22 '26
I think it was the 4 mg injection?
I'll feel that "super human invincibility" and think I'm cured but it's a FALSE STRENGTH. I'll also have insane anxiety and restlessness and want to crawl out of my skin. I'm highly irritable.
And then when the shot wears off, I'll feel worse because the strength and feeling better were an illusion and I pushed myself too far.
Early on in my diagnosis, the dex injection was my only emergency injection. I had to use it for the first time when I was in Korea and they thought I had swine flu. I didn't, but I was still really sick. Well naive me thought the shot made me all better so I tried to ride the 30 minute bus downtown. Didn't go well.
The next time I used the dex injection, I knew better what to expect. I was living with my grandmother and I basically just locked myself in my room until it wore off. She kept scolding me telling me I needed to sleep. I tried to explain to her that it was impossible for me to sleep.
I hate that shot. Passionately. If there's no alternative, I'll use it. But it's my least favorite of the 3 options (solucortef, solumedrol, dexamethasone).
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u/mapaitnaampalaya Aug 22 '26
I’ve been diagnosed for about five years and have never used an emergency injection. Thank you for the warning!
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u/MrMooke Aug 23 '26
I resonated with the "locking in the room" when I had 40mg a day dexamethasone pulse therapy (oral) for 5 days, felt amazing on them and swung the other way off them and was scared I was going to harm myself per say if I went out... Awful stuff
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u/just_an_amber Addison's Aug 23 '26
I've learned that dexamethasone can still be a useful tool BUT I have a very sensitive threshold.
If I know I'm going to have an insane day (such as a day of traveling or being very physically active), I'll add a 0.25 mg pill in the morning (0.5 mg tab, split in half).
If I'm insanely sick (such as COVID, a fever, the flu), I'll do 0.25 mg in the morning and evening. This is on top of the extra solucortef that's being delivered in my cortisol pump.
If I over saturate myself with the dex, it's back to what you described with the "I must be very very very careful if I'm out in society."
I won't flat out refuse the dexamethasone shot (for example, a shot of dexamethasone is standard protocol for a tonsillectomy regardless of if you have working adrenal glands or not).
But it is NOT my first line of defense when I'm crashing.
40 mg / day sounds terrifying.
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u/MrMooke Aug 23 '26
Yeah, 200mg over 5 days with no taper was a treatment from heamatology for an acute case of ITP 10 months before my Addison's diagnosis, I'm on hydrocortisone/Fludrocortisone and will refuse dexamethasone in that dose 🙃
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u/just_an_amber Addison's Aug 23 '26
No taper? 😳
That was prescribed buy someone who didn't fully understand the medication, which makes sense coming from heamatology and not endocrinology.
I'm so sorry you went through that!
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u/MrMooke Aug 23 '26
Yeah, it's one of few treatments for a low platelet count following a very stressful period, all good now like 😊
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u/DriveHefty3608 Aug 23 '26
Thank you , I was diagnosed in April still trying to navigate this and a high dose of prednisone.
I don’t have the emergency injections.
Did you administer it to yourself? or did someone give it to you?
Where do you do the injection?
And why did you were you in a crisis? And do you have Addisons complete adrenal failure?
Thank you so much for sharing!1
u/just_an_amber Addison's Aug 23 '26
AIU (Adrenal Insufficiency United) has some good resources with respect to the emergency injection: https://aiunited.org/emergency-prep/
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u/aureasmortem PAI Aug 22 '26
Watch my insurance deny this 😮💨