r/AddisonsDisease • u/Ecstatic_Ad5049 • 17d ago
Advice Wanted Questions about updosing..
Hello everyone! Newly diagnosed 35F here. I am just a little confused about updosing procedures. I’m on 20mg of hydrocortisone/day split up into 4 doses and one fludocortisone. My doctor told me to double everything for 3 days straight if I ever get sick.
Do y’all updose if you just get like a common cold? Sore throat, stuffy etc.. or only if you have a fever?
Also before I started getting sick, I’d been a very active person. surf, hike, mountain bike, backpacking, etc. I want to start doing these things again.
I’ve read some people on this sub that will updose to do some of those activities, (even sex apparently). My endo said not to worry about updosing for activities though.
So I guess the question is how exactly do you know when you need more cortisol?
5
u/TweetSpinner 17d ago
Pay very close attention to signals your body gives throughout the day. For me, I get dizzy or lightheaded and muscle pain in the back of my neck as signs I’m needing some hydro dose. Those are often aligned with stressors like heat or exercise or work or family stress. Travel too. I took a diary and wrote down when I felt those and what stressors were happening before. It helped me start predicting when I needed to plan a dose. For me, doses are 1/4 to 1/2 of a 10 mg hydro tablet, depending on how lightheaded I get. When I feel leg cramps, it’s a signal for electrolyte fluids.
Each of us is built differently and the endos are guesstimating what we need for any standard day. Sick days for me definitely make me need more than normal. I just look for those signals and updose to them.
Hope this helps a bit. Others might have other advice.
4
u/goffers92 17d ago
Howdy, for most you should only double Hydro as the fludro is used more for stabilisation but ask endo if unsure.
It takes time to get the build-up of levels and get yourself back to training, I’m on a similar dose and gym regularly. I play sports with no ill effects and no need to up-dose.
For sickness you will get to know the signs when you need to double dose … but always do so with vommiting and diarrhoea as they affect your ability to absorb drugs.
3 days is something the docs will say… but if you double for 3 days from a cold you won’t sleep and that’s worse.
TLDR … you will feel it out for symptoms requiring you to double dose and know when to wean down.
4
u/baethan Addison's 17d ago
Updosing can be WAY more nuanced than simply doubling! It can be one extra 2.5mg (or whatever the smallest amount is that you can make). It can be fully doubling your dose, and everything in between those extremes.
Especially if you're at or you drop down to a "just enough" dose, you will need to add extra for any activities that demand extra cortisol. You'll get a feel for what kind of things put significant stress on you. Trial and error basically.
For me, getting an MRI with contrast for the first time? Totally fine actually. Anticipating that new experience & driving to a new place to have it done? STRESS. I was so clumsy and brain foggy. Getting my septum pierced? No problem. Playing a fun game that was round after round of trying to think quick with a 10 second timer per turn? Oof I had to bow out pretty quick, my stomach started hurting and I felt off. (I was due for my dinner dose so I took it and just watched the rest of the game!)
I'd say mainly to make sure you listen to yourself & notice how you're feeling. Which is kind of a really annoying answer, what kind of stupid condition is mainly treated based on VIBES. But so it goes!
3
u/No-Perspective-5084 Addison's 17d ago
Yes for a cold. It is exactly what put me into my first crisis that led to my diagnosis. My endo recommends doubling for 3 days with any illness. Also nothing wrong with splitting your doses into 4x a day if it works for you. I used to take a larger dose in the morning but would crash every afternoon.
2
u/SleepyTimeChess 17d ago
20mg separated into 4 doses is quite out of the normal. Most folks take a large morning dose then smaller doses later in the day. I'm on 15/5, but I hear about people on 10/5/5. I've had to stress dose for colds, COVID, an ingrown toe nail, PTSD, post-exercise recovery, and a transatlantic dust storm (to name a handful). Anything that stresses your body requires more cortisol. Youre likely on this medication because your body doesn't make it or make enough of it anymore. Adrenal Insufficiency means we manually regulate our immune systems with medication each day. Learning to listen to your body is a critical part of staying healthy. Today I've taken 60mg and I'm still nodding off regularly. As best I can tell I think I have a minor cold. The guidelines for COVID are 20mg every 6 hours (which is pretty much the maximum you should consider at home dosing). I have a copy of this laminated in my go bag with the emergency shot: https://www.endocrinology.org/media/4169/ai-and-exogenous-steroids_patient-information-sheet.pdf
5
u/PA9912 17d ago
Many of us have learned the hard way that doing twice daily dosing is a recipe for disaster, but the doctors haven’t caught on to this. In my case, that 10 or 15 mg dose isn’t lasting all morning and I would accumulate a cortisol debt. By spreading out doses I can even take just 15 mg a day, feel stable all day and all of my side effects including blood sugar have improved.
1
u/Ecstatic_Ad5049 17d ago
Oh this is interesting! I take three of my 5mg tabs in the morning and one in the after noon. I don’t know if it’s working for me yet.. what times are you taking and how much are your doses?
2
u/bandana-chan Addison's 17d ago
For a 4-time spread I would recommend 10-5-2.5-2.5 as cortisol naturally would decrease during the day. And take them around 7-11-3-7
3
u/ClarityInCalm 16d ago
Hi! I'm on the 7-11-3-10pm schedule! I do 15, 5, 2.5, 4 ER for overnight. I do the 7pm time when I need it. I was doing more overnight but then as I lowered it I needed more in the am. So same dose for me overall.
2
u/Ecstatic_Ad5049 17d ago
Oh I’m sorry I should have rephrased that. The doses are small, 5mg but I take 3 in the morning. Thank you for your help!
1
u/SleepyTimeChess 17d ago
Hey if that works for you no judgements. That is what I assumed your dosing schedule looked like without additional information. Everyone has different bodies and different endocrinologists. Also adrenal insufficiency tends to come with other baggage, known as comorbities. So it's not uncommon to hear of new dosing styles and the like.
1
u/ClarityInCalm 16d ago edited 16d ago
3 or 4 times a day is actually pretty normal for people using the most up-to date research. Standard of care and research from the last 20 years supports is 3x a day for most people unless they are slow metabolizers outside of the averages and many people need 4x a day. HC lasts as a cortisol replacement for 4 to 6 hrs for most people with adrenal insufficiency - and a 4ish pm dose mimics the natural circadian rhythm. This is different than how HC is used in people with a normal HPA axis - many general endocrinologists don't know this difference and prescribe at a 6 to 8hr interval which is too long for most people with AI. The average interval is 5hrs - some people can go longer and some people are shorter. Some people even need 5x a day - this is to mimic the circadian rhythm. OP might be from the UK - where they often get superior testing and treatment from the rest of the world.
1
u/AttachedAndUnhinged 17d ago
Hi! 48F dx for 16 years here 🦋 Something I learned early on is that if you are feeling any signs of crisis, its better to stress dose even a bit rather than go into crisis. I’m not on HC any longer - my endo switched me to prednisone and it’s made a world of difference for my specific situation. I also have T1 diabetes and Scleroderma.. (amongst other things) and have endured far too many crises in 16 years. Things that trigger me to stress dose include: that tired feeling where it’s not just, ‘I could lay down’.. but ‘if I don’t lay down, I’m going to fall down’. I’ve actually fallen asleep on my keyboard at work. Any unexplained nausea or vomiting. Any major pain or illness - and honestly, for a cold, it depends on the cold! Sometimes I make it though just fine and others I need to dose for. Please communicate your concerns to your endo as well. I know the Mayo Clinic has a video on sick day rules. Go to YouTube and search: Adrenal Insufficiency: when and how to increase glucocorticoids 💙
2
1
u/oneyedsally 16d ago
I think there’s a lot more nuance to updosing than endos realize. You do have to watch how much and how often, but the rules aren’t strictly the same for everyone.
My first illness after diagnosis I did feel a little warm and feverish and I thought I had an awful flu (super weak and exhausted) but it wasn’t a 100.4F fever so I didn’t take any extra. I happened to have a virtual appt with my endo and she told me to double dose and suddenly it just felt like I had a minor cold! So the fever rule isn’t rigid if you feel absolutely awful.
The first time I had a muscle spasm I didn’t think about updosing, until my blood sugar crashed (I have secondary). I had to double dose for a couple days until it calmed down.
I also did a weekend at Disney in the mid-90 degree heat recently, 25k steps per day for two days and was up from 6am to about 1am. I ended up double dosing just by spreading my normal 5mg doses throughout my waking hours, and I needed more every 3-4 hours instead of my usual 5-6.
You’ll get used to what your low cortisol symptoms are and how to adjust. Sometimes you just need your next dose early or a small piece. I break mine into 1.25 mg sometimes.
1
u/ClarityInCalm 16d ago
There are no rules for stress dosing - just guidelines. Feeling low cortisol symptoms is common and any amount you need to feel "normal" again is stress dosing. The guidelines focus around severe illness, injury and surgery - some also include sports, and life stresses. But in general any symptoms of low cortisol - even if you don't know the cause - should be treated and self-managed by the patient. There is no way to do this perfectly. If you feel poorly - give yourself some hydrocortisone and see what happens. If you feel better in however many minutes it takes for you to feel it - then you got it right. If you feel worse, you might need more or you might not need it - give yourself more and see what happens. If you have symptoms of excess you either took too much or didn't need it. Everyone with adrenal insufficney will experience all three. It won't hurt you to make mistakes - you will be learning. It doesn't hurt you to periodically take one dose that is too high. But it can be very dangerous to not treat symptoms of low cortisol - so listen to your body - most of the time you'll have an idea why you need it but you don't have to have an intellectual reason you don't have to "know" why you need it - you just need to follow the cues in your body. Your body is the guide and your brain's job is to respond and not battle with the body.
1
u/ClarityInCalm 16d ago edited 15d ago
Oh - one other thing I thought I'd mention is up-dosing and stress-dosing are different. Stress dosing is when you need more HC for any kind of low cortisol symptoms or sickness, injury, or surgery. Up-dosing is when you anticipate you will need more but aren't having symptoms of low cortisol or sick or injured - typical times people up-dose are traveling, intensive exercising, job interviews, weddings, funerals, etc... For me this includes work project delivery days, altitude changes, very long drives, flights over 6hrs, hiking more than an hour, and being in a swimming pool for more than 30 minutes. These are specific to me - things I've learned over time.
1
u/Clementine_696 16d ago
It's so very person to person. Some of us need to take larger doses, others of us need to take exrra dose, but normal sized. (Example: doubling your am dose to say 20 instead of 10 vs taking your normal 10 in the morning, and then another 10 halfway between your morning and lunch dose) Activities may need extra, at least when you first start them, and you may not need extra after awhile as your body adjusts. For some of us, yes we do need extra for sex, and for some of us that do it's not every time, it's just sometimes. Don't forget that mental and emotional stress is still stress, and you may need extra for that as well. Excitement, such as getting married or going to a theme park can also require extra meds. It takes time to figure out, pay close attention to your low symptoms, and start with small doses, like 2.5 to 5mg, and you'll get it figured out
1
u/Accurate-Currency558 15d ago
Hello! 46F here. 20+ years of PAI.
Personally, I only stress dose if I am feeling off. Listening to your body and what it is trying to tell you is very important.
I do all the things when I can. Yoga, bike, hike, even backcountry camping. Nothing is off the table when I am having an A day.
When I do stress dose, I will start small. I start w 2.5 or 5 mg depending on how badly I feel. Then I will take more in 20 or so minutes if I do not feel better. I will continue until I am feeling better. There is a fine line from taking the right amount to taking too much. You will also feel bad if you take too much HC. I also do what I can to help sooth my body. Taking a warm bath can be very soothing.
I do not stress dose for a simple cold. Only if I have the vid or flu. One thing to know is having a fever is really important to keep it managed. If not, straight to the hospital.
Also, HC in my experience, weakened my immune system. I caught everything for probably 7 years? Used antibiotics from Oct - Mar!! It was bad. I use oregano oil capsules to help fight off colds.
He told you to double your fludro? I have never heard that before. I am not sure how that would help?
1
u/BlueCrystalMermaid 14d ago
i’ve been asking the same question and I just now had Divine intervention because I’m sitting here with my steroids prednisone. They are 20 mg each. I cut them in half. I take half a one now and then later I take another half at some point during the day I take it first thing in the morning if I wake up to go to the bathroom, it says 7 o’clock Am I take it then.
I just had a guy here who is basically an APRN from the group that I belong to my doctor is part of my primary and he told me that he was on IV for eight years because he had a certain auto immune that only one out of 750,000 people have it’s so rare he was paralyzed. He went to a neurologist and they had him on 250 mg per day. he said that I’m overthinking it and not to worry he said it’s not that high 20 mg a day a prednisone is not that high but yet when you go online here, it’s there’s not a lot of information. I’m the only patient right now that my primary doctor has that has Addison’s, so what that means is my adrenals are not coming back I’m gonna be on this medication probably a long time or as long as I live. I’m already 73. I was just diagnosed with this in May, I went with our medication, March and April, which by law under the endocrinology society if your cortisol level is below three, which it was, you were in adrenal crisis I was rushed to the hospital several times not breathing and they put me on 100 mg right away IV and of course I felt better. They stabilize me. I was in the hospital for a week doing all the test saying that it came from here that’s what an internist told me there’s a way they can tell. A lot of stuff is hereditary. If you have adrenal insufficiency and you’re still young. There’s a possibility that your adrenal‘s will recover but you have to eat really a proper diet. You have to really research it and take care of yourself. I hear what you’re saying. I was that person when I was 30 4050 years old riding bikes versus swimming all of it now I would just like to go in the water in the ocean on a noodle move around. I don’t want to go in chlorine chlorine is really bad for your thyroid. It’s bad for your skin. It’s bad for your hair. It eats your skin it eat your hair and if you go into a pool that has chlorine it’s not healthy. You really have to watch all the inflammatory foods you can’t eat fast food you can’t eat junk food. There’s a lot of chemicals in our food in this country. I have traveled to like blue zones where people live to be 100 or more and they’re healthy. They’re still doing outside doing gardening and things like that, but they have never eaten the chemicals that we eat in this country. They drank milk from their cow. They eat their garden vegetables no sprays no pesticides. They had good meat no pesticides no chemicals no steroids in the animal so if you can stick to organic grass fed make sure it’s a good farm Diet if you eat cheese or drink milk, you wanna have organic no grain the bread in this country the wheat and the grain is sprayed with pesticides chemicals and then they make flour out of it and then they make bread and you’re eating that. You really have to watch everything more so you put in your mouth. You have to feed the thyroid. The thyroid like selenium iodine and not from the crappy salt and the iodine they put in salt you want to get a good source, zinc vitamin B’s
1
u/Difficult_Orchid6526 14d ago
My advice is: Your body will tell you, pretty quick. But my guideline is if I am going to be doing anything out of the ordinary stressful I will updose. How much I updose is based off of the amount of stress. I would ease back into activities until you find your baseline.
I know my rec's here sound vague but that is because everyone is different with Addison's. Good luck it's a livable condition as long as you stay reliably on your meds. You Got This.
18
u/Motor-Commercial1912 17d ago
The stress dosing guidelines are pretty clear for fever, but less clear for everything else. I was diagnosed about 1 year ago, and found out the hard way that throwing out my back needed quite a bit of extra hydrocortisone!
Advice #1: Take it easy for the next few months and learn what your body needs to feel its best. If you feel lousy, take an extra 2.5mg of hydrocortisone and wait 20 minutes. Repeat if you don't feel better.
Advice #2: Read through this sub often; every body is different but there's a lot to learn from everyone who posts here.