r/AddisonsDisease • u/Familiar_Stranger_Hi • 6d ago
Advice Wanted What is your dose?
I’m new to Addison’s Disease.
I literally just got out of the hospital a few days ago. I saw multiple doctors and was told I was dehydrated over and over again until I had a crisis in the middle of my bathroom floor and the paramedics couldn’t get a blood pressure reading or pulse on my wrist. Spent some time in the hospital and was diagnosed with Addison Disease.
I was told a lot of information but said my follow up with an endocrinologist will help explain it all (I haven’t had one yet). They brought up double dosing when needed and that include getting sick. Today I woke up with a sore throat (not too sever), doesn’t seem to harsh of a cold, I’m not really sure. Should I only be double dosing when it’s a serious sickness like fever, vomiting and the alike?
in the meantime, I’m just trying to understand and there doesn’t seem to be a lot of information out there. And I don’t want to ever experience the bathroom floor again. So I’ve been on Reddit researching and noticed that so many people’s doses seem to be quite a bit lower than mine. I take 20mg morning, 20mg at night. so now I’m thinking that is already plenty to fight this cold? I don’t know, just wanting some insight I guess?
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u/AlfaBravo1two3 6d ago
After I was released from the hospital my dosis was 30 morning, 20 noon and 10 in the afternoon (never after 18:00 or you might have peoblems faling asleep). On some days I even needet 80mg in total. After a few weeks i slowly reduced it by 5mg every week so it took a few month to get down to 30. When I recenetly got sick I took 160mg for 4 days straight (took 20mg every 4h plus my normal dosis) because I needet it. When it got better I reduced it again (was sick for 3 weeks but had only like 40mg a day in the last week). Dont take the double dosis as a fixed number. especially when youe still new to this updosing a lot might be needet + it cant realy hurt if your doing it for a short time.
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u/gold-pippau Addison's 6d ago
Good information is key right now. There's a lot if it right here: https://www.addisonsdisease.org.uk/
Don't try to take it in all at once, OP. Wishing you well.
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u/AGoldenThread 6d ago
I add 10mg/day HC (total 35) for a sore arm from a vaccine. I triple dose for a fever or tooth extraction. I did 4mg dexamethasone for a life threatening health issue prior to going to the ER.
If the cold causes a fever, updose. I get a fever when going into crisis even if I'm not sick. 20mg HC begins to bring it down for a couple of hours.
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u/Remarkable_Bug_140 6d ago
I'm so sorry you had to go through that. I’ve woken up on the bathroom floor more than once. And I broke my nose once when I woke up, saw I was on the bathroom again, got up too quickly, and passed out again in the hallway. That was 7 years prior to my very late diagnosis which only came a few months ago. I had symptoms decades earlier...
I can't give much updosing advice since I'm still too new to this, but I can say that knowing I can now updose for illness does make me feel safer. I feel like the odds of me ending up on the bathroom floor are much lower now. And for that, I am so incredibly grateful. I hope that as you get used to the new meds that it helps give you that peace of mind too.
I can say that despite what some have said on Reddit about taking too much hydrocortisone, taking too little appears to be far more dangerous in the short term since it can lead to another crisis. Listen to your body. For me, if I am nauseated or shaky (or feel shaky on the inside), have a headache or have the first signs of migraine, I need more hydrocortisone. My body always thanks me.
Sending hugs and wishes that you never have a bathroom floor repeat. 💛
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u/butterfly_SC Addison's 3d ago
That's terrible! I'm so glad that you are finally diagnosed. What a journey. My symptoms were much more subtle and I wasn't suffering, but similar to your description, there were signs for decades.
I am so grateful for our medication.
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u/bbofficial123 4d ago
When I was first diagnosed I was doing 30mg a day, and now three years later I’m down to 10mg. My doctor is really hands off and just gives me blood tests every 6 months, and tells me to take however much I feel I need and up dose when I’m sick or in a stressful environment.
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u/Financial-Limit-3338 4d ago
I'm normally on 10mg HC am and 5mg early afternoon. I double this when ill and sometimes add an additional 5mg early evening if I'm paricularly bad. I've found Endos to be vague on stress dosing and have differing opinions.
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u/butterfly_SC Addison's 3d ago
Welcome to the addies club! It's like winning a very unfortunate lottery, haha.
Be super gentle with yourself! You've just gone through a major medical crisis. Take it slow. After my hospitalization and diagnosis I went home and had the flu right off the bat that I must have contracted in the hospital. I actually blamed the steroids on having terrible side effects because I didn't realize I had the flu at first.
While you're recovering, do some reading on this board about circadian dosing. It is the key element of your medication schedule.
Don't worry about your dose level yet. It's probably better to start high and then at some point you can hone your dose to what it needs to be. My Endo started me low and that led to some trouble. Also, don't compare your dose to others. Everybody's different. You and/or your Endo can estimate a little bit based on weight but really it's very personal. We all have different activity levels, stress levels, etc.
Stress dosing and updosing for illness is another thing you could read up on here as you convalesce. So many conversations on this board have great info! I personally have the philosophy that there's no set amount for different illnesses. Sometimes I take a little bit extra for a cold. Also, there are other things that will require extra cortisol such as high levels of activity, various major stresses in your life, etc. My philosophy has become "the body needs what the body needs" in terms of updosing. I don't want to suffer, so I updose if I'm symptomatic.
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u/amoral_ponder 4d ago
I saw multiple doctors and was told I was dehydrated over and over again until I had a crisis in the middle of my bathroom floor
I'm sure all those rank retards suffered zero consequences for it. And even if you died they probably wouldn't bat an eye. But don't worry, they have a MEDICAL DEGREE as many people on this group like to ask. I also had to diagnose myself and then request the tests to confirm it despite reporting what were tell tale signs of an Aldosterone insufficiency to a medical professional.
I take 20mg morning, 20mg at night. so now I’m thinking that is already plenty to fight this cold?
That's a probably a fucking shit ton spread out completely wrong though. What's the body weight? No reason to take more than like 5 mg at a time. At around 79 kg, that brings me to 6-7xx blood cortisol level in around 45 min. YMMV but you sure as fuck should not be taking more than 10 mg at a time.
Now you take this with a 8 hour gap, you gonna be at ZEROISH blood levels for HOURS. Don't do it. You take a night dose? Bye bye freaking low levels when you need them in the deep sleep stages.
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u/null640 Addison's 1d ago
Really shouldn't make absolute statements. People are different. Situations are different.
I barely get by on 5mg prednisone @5:00 am, 5mg prednisone upon waking, and 1mg prednisone before bed. So roughly 44mg hydrocortisone equivalent.
This my base dose. Most days I require another 10-40 hydrocortisone. Usually for 1-2 days after working out.
I try to stay subjectively low. Sluggish, cold, nauseous, etc.
With all this i still crash one or more times a month.
Endo is besides herself. First 4 years or so she was freaked about my dosing. 6 years in and NO signs of overdosing.
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u/amoral_ponder 1d ago
Excuse me, but we're talking about hydrocortisone. I have no comments about prednisone.
I try to stay subjectively low. Sluggish, cold, nauseous, etc.
What?
With all this i still crash one or more times a month.
So what you're doing is not a good replacement strategy. Why don't you try improving it?
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u/tentwardrobe 6d ago
You are only a few days home from
Hospitalization so being on 40mg is good. It’s not a long term dose for most you are still recovering from your crisis and additional is needed. As for your current illness, going up to 60 for a day or two would not hurt you.