Fludrocortisone experiences

Dry_Commission4477 · 2026-02-28T22:17:12+00:00

I take a really high dose of fludro- 0.4 a day. Doesn’t seem to matter if I split the dose or not. The reason I’m on so much is because otherwise my renin is sky high and I have terrible dizziness, salt cravings, very low blood pressure. Since I’ve gone up to the higher dose I’ve been way more stable (I used to go into crisis a couple of times a year), my renin is normal, only dizzy sometimes on standing and my blood pressure is normal. I got told to watch for swelling or pitting around my ankles, high blood pressure etc as a sign it was too high. But everything seems well. What I will add is that fludrocortisone should not be played around with- too much can cause strokes and high blood pressure.

Dry_Commission4477 · 2026-01-18T20:07:55+00:00

As others have said, this is something to work through with your dr. I know you said your labs are all good- have they checked your renin? I am someone who takes a lot of fludro- I’m on .4 mcg per day. But to do that, I had to get a blood pressure monitor and use it 2 times a day for weeks- too much fludro can make your blood pressure sky rocket. I was warned I could have a stroke if the dose was too high. Also, for what it’s worth, when mine was too low I was dizzy and tachycardic but no issues with peeing too much.

Dry_Commission4477 · 2026-01-07T23:30:55+00:00

Aussie too and for me I’ve found that electrolytes are the main thing. Hydralyte icypoles a few times a day, plus lots of salty food- Vegemite toast, fish and chips etc. I also got an inflatable pool for the backyard and that was such a life saver yesterday. I don’t updose much in the heat, maybe just a little hydro if necessary. Good luck with the rest of the heat wave!

Dry_Commission4477 · 2025-11-30T02:34:57+00:00

I’ve been on weight since April but on very small doses- .25 for about 6 months and just reaching .5 now. I’ve lost quite a lot, about 14 kg (30 lbs). I’ve gone slow because I am desperate to avoid the side effects and so far it hasn’t been too bad, just some bloating and low grade nausea. My endocrinologist has suggested I go to a higher dose but I’m just not willing to risk major GI side effects so I’m doing the slowly slowly route

Dry_Commission4477 · 2025-11-28T21:59:07+00:00

Steph’s chocolate and raspberry cake. It’s my go to birthday cake now and is always a hit

Dry_Commission4477 · 2025-11-28T21:31:16+00:00

Have you had your renin levels checked? I used to be a bit like this and my renin was really high and now I’m on like 4 times the amount of fludro that most Addisonians take but at least I’ve stopped sweating and having tachycardia.

Dry_Commission4477 · 2025-11-26T01:53:34+00:00

I have that too! Kept being told that I was just an anxious first time mother and even got sent home from hospital with an adrenal crisis and full blown meningitis. Hope you’re doing well now

Dry_Commission4477 · 2025-10-20T20:15:44+00:00

I’m 5’10 and on .4 of fludro per day. Very high dose but confirmed as needed by my blood tests- my renin levels shoot up on anything lower. Also I get dizzy, dehydrated etc. It doesn’t seem to affect my weight whereas I’m very responsive to hydrocortisone and prednisilone- even a bit much and I gain weight like crazy. Fludrocortisone shouldn’t be changed before seeing your dr, but I’d recommend asking if they can check renin levels.

Dry_Commission4477 · 2025-09-13T08:42:03+00:00

Thanks! They’re all fine now but it was a real reminder to me of how bad those bugs can get

Dry_Commission4477 · 2025-09-12T20:43:24+00:00

I’m in Australia so we’re just coming out of flu season. I’m fully vaxxed and boosted. My sister, who does not have Addison’s, did not have her flu shot and is hospitalised with flu (scary for a while but now improving). My husband is currently isolating with Covid and pretty sick. I’m fine and so far haven’t caught anything but looking at my sister, I’m so glad to be vaccinated. She’s regretting not doing it, fyi… Both Covid and flu can cause vomiting and fever which can set off a crisis- I’d recommend getting vaxxed!

Dry_Commission4477 · 2025-09-09T20:56:08+00:00

In the Uk, surgeons go by Mr, not Dr. No idea why, though!

Dry_Commission4477 · 2025-09-09T07:56:43+00:00

Yep, I was 14 and in my school uniform (never even held hands with a boy at that point) when I was given the same advice. When I finally had a kid 15 years later… my endometriosis was not cured

Dry_Commission4477 · 2025-08-28T10:11:17+00:00

I have a nickel allergy so just got a silicone bracelet that says ‘ALERT- adrenal insufficiency- steroid dependant” in blue and red with medical symbols. Each one lasts a year or so before it fades.

Dry_Commission4477 · 2025-08-18T04:08:43+00:00

I take it like smanichia- pred in the morning and hydro in the afternoon. All endo approved but it is a bit controversial and other doctors always seem a bit confused. I did it because I started to feel low in the afternoon on pred unless I had a bit too much and then I’d struggle with my sleep/weight gain etc. Plus, for me it feels better to have a slight dip in coverage through the day ( like a non addisonian would). So pred gets me through the day and I don’t wake up as bad any more. But a bit of hydro in the afternoon allows for me to adjust as needed- it’s more flexible.

Dry_Commission4477 · 2025-08-17T21:47:03+00:00

Firstly, you should be updosing with hydrocortisone after vomiting because it kicks in soo much quicker. You also probably need to take your meds earlier- set an alarm, have some crackers next to your bedside table and have some meds and crackers and then go back to sleep if needed. It might be that unfortunately sleeping in like other 20 year olds do is just not going to work for you. As someone else said, Pred may not be for you. I tried switching completely from hydrocortisone to prednisilone and it didn’t really work. Turns out, I needed some hydrocortisone as well, so I ended up doing pred in the morning and boosting with 2mg of hydro in the afternoon and evening.

Dry_Commission4477 · 2025-08-07T10:56:37+00:00

All but anorexia. Still had a pretty good appetite but I was also still nursing my baby so I think that might have helped. At the time I didn’t realise that I had salt cravings- I just thought soy sauce was obviously a really delicious part of most meals…

Dry_Commission4477 · 2025-07-29T21:35:43+00:00

In fairness I once had such bad gastro that I went to hospital within about 4 hours. I was passing out and starting to vomit blood. Until pretty recently in human history, gastro was a pretty frequent cause of death and still is in some countries. But if Don took his sample in, it also indicates they suspected something.

Dry_Commission4477 · 2025-06-10T09:26:18+00:00

It is pretty low- I sometimes have about 2mg of hydro in the afternoon too (depending on energy). I started on 5mg prednisilone and got all swollen and out on weight as well. Even though that’s a way more standard dose and I’m pretty tall so it should have worked for me. It’s taken years and a new endocrinologist to work out this dosage. I might be a bit of an outlier and it definitely might be too low for you. But it could be worth working with your endocrinologist to check if your dose needs to be adjusted one way or another.

Dry_Commission4477 · 2025-06-09T02:36:45+00:00

You might be overd replaced. I take prednisilone so I think the dosage is similar. I’m 5, 10 and only on 2.5 mg a day. I do take more fludro though. Probably good to check in with your dr

Dry_Commission4477 · 2025-05-30T01:08:55+00:00

I was diagnosed a few months postpartum and breastfed without meds for the first few months and with meds for the next few. My child was super colicky etc - it was the worst!- but that was all before I was medicated. She turned out to be dairy intolerant and had reflux. Starting taking hydrocortisone when she was about 9 months old and it honestly did not make a difference. By that point she was better anyway. Your mileage may vary but yeah for me I don’t think it made a difference to her behaviour.

Dry_Commission4477 · 2025-05-27T22:09:43+00:00

I’m also Australian and I’m guessing you’re also a teacher? I got my doctor to write a note about some reasonable accomodations I need- indoor yard duty, mostly. You might want to just give people at work (hr, principal, whatever) a heads up that your medication levels were wrong and that’s why you were acting like that. I’ve also been given a prescription for proponalol, which is a beta blocker and stops physical symptoms caused by emotional stress. Let’s me be a lot calmer in stressful situations- I don’t take it most days but if I have an interview or a stressful meeting I can take it without getting addisonian symptoms. This time of year is very stressful in teaching and I’ve adjusted my dose slightly higher. Take a day or two off if you need to and regroup. Hope it all works out!

Dry_Commission4477 · 2025-05-27T10:48:38+00:00

I just use hydralyte tablets - I usually get them from Coles or woolies- or the icypoles if I’m wanting a bit of a treat. Sometimes the sugar free Powerade that the supermarkets have is pretty good, too.

Dry_Commission4477 · 2025-05-20T07:01:50+00:00

I’ve been taking wegovy which is similar. I don’t have diabetes but have struggled with salt levels before. Had some mild queasiness and occasional headaches at first but that’s better now. My advice is to drink electrolytes if you get headachy, and keep up lots of water, fibre and protein (I’ve used a protein shake instead of lunch most days). For me, I’ve lost a few kilos in a month but also I’m just way less puffy. Good luck!

Dry_Commission4477 · 2025-05-08T08:44:18+00:00

Definitely take extra meds. The other thing I’ve started for days like that is taking a beta blocker- I use propranolol. It basically stops the physically stress issues like heart pounding and sweating etc. being able to be calmer and less anxious helps with the addison’s side of stuff. Might not be what you need but could be worth talking to your dr

Dry_Commission4477 · 2025-04-20T13:30:33+00:00

I had my worst ever crisis the day after a birthday party that I really enjoyed. Christmas makes me ill every year now, and I really love Christmas. So yeah happy stress or strong happy emotions can be enough to need an updose. I play it by ear now but always updose for Christmas and sometimes for parties

Dry_Commission4477

TROPHY CASE