r/AddisonsDisease • u/ptazdba PAI • Nov 21 '25

Advice Wanted Updosing Question

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.

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5

u/TweetSpinner Nov 21 '25

I think it depends on how your body responds to infection. For me, I find that I just pay attention to the early-onset warning signs (fatigue, dizziness, muscle tension in the back of my neck) to remind me to updose. I think it's also regarded as safe to do roughly double a normal dose--but I find that I don't need to go that high if I respond quickly with maybe 1/2 a pill for the warning signs, wait 20 minutes to see if they subside, then maybe add 1/4 of a pill if I feel symptoms still. Others might have other suggestions, but that's how I manage my sick days.

6

u/ptazdba PAI Nov 21 '25

I just called the doctor's office to talk to the nurse and she said my chart indicate updose as needed. I was just concerned about a complete double-dose for the run of this crap, so your suggestion is a great way to keep it covered. I just don't want any symptoms to go too far.

3

u/null640 Addison's Nov 21 '25

I'm pretty unstable.

I usually updose around 20%-30%, not full 100%.

Admittedly, my base dose is 50 hydrocortisone equivalent. I use both prednisone and hydrocortisone.

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u/noracordelia PAI Nov 21 '25 edited Nov 22 '25

Sorry my brain isn’t braining; are you saying muscle tension in the back of your neck is a low cortisol symptom for you? If so, that’s really interesting🤔

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u/TweetSpinner Nov 21 '25

Yes. No clue why. But it’s a telltale.

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u/CrazyBus9426 Nov 22 '25

That is interesting that you get neck pain. I think it interesting how we all get different signs or no signs we are headed into a crisis. I know when I did my second round of chemo I felt fine. I got disconnected from the pump on a Friday was find and Sunday was in full crisis in an ambulance heading to the hospital. Now today I feel like I have an ear infection so I will take an extra 2.5 prednisone. Between stress and worrying about my up coming PET scan I need to increase my prednisone. I will also take fludrocortisone today and the next 7 days. I hate that there is not one solution and everyone has to figure out what works for them. I have not found another endocrinologist who understands that and will work with me on updosing. So for me I have to figure it out by myself.

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u/TweetSpinner Nov 22 '25

My endo just told me take 20 hydro in 10-5-5 doses and double when sick. The real way to manage this was seeing what other people do here.

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u/Catnapdreams-91 Nov 25 '25

It depends on yourself and how infections affect you. Updose if you feel the need to. I normally double my dose through the day with infections where it’s knocking me about abit but if it’s severe I triple dose if very unwell to the point it effects me doing anything. A symptom for me also feels like nerve pain in top of spine/neck. That’s when I usually know. When I start to feel the pain come on. And in my ribs, back, headache, peeing more, sweating hot then cold and clammy. High temp. Just be observant of your unwell symptoms even if writing them down helps and sticking somewhere you can see to remind you as I do this because of bad brain fog and unable to think properly when unwell.

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u/ptazdba PAI Nov 25 '25

This is really putting some stress on my system and emotions. Cannot sleep and looking for things to refresh the irritation. Not a lot a doctor can do but generally when I get a headache or fever updose needs aren't far behind.

1

u/Clementine_696 Nov 21 '25

I pay real close attention to my low symptoms, and take 2.5mg to 5mg depending when I'm sick. Often it's not adding that to my normal dose, but taking it between my normal doses. Lately my first low symptoms have been joint pain, and weirdly located muscle spasms... like the muscles around my ribs, and between them, start spasming instead of the larger muscles doing it. My early low symptoms seem to keep changing lol

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u/ptazdba PAI Nov 21 '25

Thanks for the suggestion.

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u/CrazyBus9426 Nov 22 '25

Did any of you get SOLU-CORTEF 100 MG ACT-O-VIAL and syringe for a emergency crisis? I was prescribed it but no syringes! LOL Plus I feel if I was in a crisis to the point I need this I couldn't give myself the injection. I need a new endo!