Addison Disease Support Group

Doctor wanted to switch me to a liquid steroid because I have so much trouble with Absorption. They do not make a liquid HC so went with Decadron. I was supposed to be taking 5 ML twice a day, it was new for me and the doctor just told me she wanted me on 1 MG a day which converts to 5 ML twice a day, I know nothing about the metric system because it hurts my head to think about it so when I picked up the new Rx it said take 1ML once a day, so that is what I did for two weeks obviously I have primary so I make absolutely no Cortisol, started having weird symptoms but kept putting it down to other things (I know that was stupid), then all of the sudden I wake up one morning vomiting, can't breathe, horrible pain I am in crisis, my husband rushes me to doctor for emergency shot, but they can't get my cortisol up enough, auto-immune goes down, I get shingles and thrush end up in hospital with another crisis and then had to have surgery to place a j-tube because I couldn't eat. All because the pharmacist said the Rx wasn't clear to him, so he assumed... I was taking about a tenth of what I was supposed to be taking.

Oh yes Bob. i do have issues with fluid balance and B/P. tryin to keep balanced. Thank God for diuretics!! Too lil cotisol--low Too much HC--too hi. Its a jugglin act...I'm sure you have yours down to Science by now...but I still workin on it. I should be an expert soon though. lol.

Well I dont go the diuretic course. My management is basically water regulation, HC intake and eating salt. ie I dose HC for fatigue/energy/cognition, drink water (hoping enough mineralocorticoid comes from the HC) and if I have to keep restrooming but staying dry I eat salt. Hydration feedback is dry throat/sore muscles at one (low) extreme and ankle bloating/high BP at the other.

It does all vary a lot though, especially in HC stress dose situations and when I add Pred. Right now I have to lower my HC intake and that dries me out more!

Science with unbounded data! Reminds me of "normal" Cortisol levels!

Bob

Hey Bob, wanted to let you know my family doc finally listened to me and increased my Dex to 6 ml twice a day because once we increased it back to the 5 ML once a day I didn't feel like I had the flu all the time. So he wants to see if increasing it in small doses will help with this pain and swelling I have been having. So, I started that today. I am still having terrible swelling and pain in legs, hips, back, arms, and stomach. Even my face is a bit swollen. Have discovered that whenever I eat any kind of food I swell big time. If I just tube feed, not so much swelling. Can you imagine not being able to eat anything?? I don't know if I could handle that or not. I guess I would have too.

Okay good move Teri

I wonder too if you are going to have more problems as it gets colder. ie will more Dex be needed as your body has to keep its temperature up.

Yes you are correct, it is snowing here and very cold and yesterday it started and I have to say I was miserable. I got off work at noon and went home and bundled up and was so achy. I didn't take my temperature, probably should have.

Snow, whats that? Have to go look in the fridge!

With my adrenaline frustrations of late I have being swinging wider with AI hypo and hyper states. I have had the "freezing colds" in the evening on a few occasions as well as gyrating BP and feet bloating. Horribly, if I stay sedentary it isn't difficult to control. Yesterday though I was planning for that kind of quiet day and had taken 30mg of HC already, when I found I had to go to the doctors at 4PM. I felt okay walking the first 500 yards but then the adrenaline started again and I went into an OD state of high BP. That wore me out real quick!

Oh I have just claimed disability by the way. Very different process to the US. Shall fill you in on the details later.

Bob

Bob: Yes let me know how the disability thing goes, I have several friends who suffer from Bi-Polar that have gotten on disability and they said it took a year or two and a couple of them had to get attornies involved, I would hate to do that. Not sure what the precendce is for Addison's because it is rare? So you don't get snow in Oz?

Hi Teri

Oh we get snow, just really only on mountain tops! This town supposedly gets it one day per year on average but you are talking only 1/4" or so. Where I lived in TX is roughly the same latitude as Sydney but even inland here at that height its very very rare to see any snow.

I shd probably know about my case by late January. Christmas kind of slows things a bit and I am not exactly rushing things. Even if I miss the qualification mark I'll still get assistance.

Bob

I am glad you will get assistance Bob! This is a horrible disease I can't believe how far down I have gone, it is really upsetting at times. We have about 5" of snow on the ground right now here in northern Indiana. Still coming down. I am walking with a cane now and it is so scary out there in the ice and snow.