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Addison's Disease Message Board

Addison's Disease Board Index

Hi everyone. I was diagnosed with Addison's only a few days ago. Things got crazy... I went into adrenal crisis before I was diagnosed. Guess that's the problem with being too stubborn to go to the doctor! I have been prescribed Prednisone and Fludrocortisone. Also Protonix for stomach acid.

Here's my story in a nutshell. Over a year ago I was a healthy (little chubby for my height, 5'5") 140lbs. Happy and healthy. By July '08 I weighed in at a whopping 102lbs. My dad died in June '07 and I started getting depressed, lethargic... In December '07 I went to the doctor where I was diagnosed with depression and began Cymbalta. That's when the weight started falling off. It helped my mood, but that's about it. I was losing 5-10 lbs per month. My appetite decreased and I was very moody. Fast forward to May '08, my husband and I split and I get my own apartment. Still no appetite, and continually losing weight. June 13 '07, I lose my job. That's when it all went extremely downhill. Within a month I became unable to work, eat, sleep, even walk around my apartment (which is VERY small). I was out of breath, exhausted, dizzy, vomiting all the time, cold sweats... every symptom you could think of. I finally decided to go to the doctor, but by that time I couldn't even drive so my mother took me. My BP was 50/69 (I think...something like that), and I was in full blown adrenal crisis. I was rushed to the hospital, pumped full of saline. At this point they still thought it was ulcers due to stress or a stomach infection. After an endoscopy ruling those two out, my doctor suspected adrenal insufficiency. That's when they started the testing. I went into the hospital on Monday, and by Tuesday evening, Addison's was considered the prime suspect. Today is Friday. I'm on my meds and feeling well, except for some indigestion. But that's probably due to me not eating for a few months!

So... I'm here to find out what to expect with this disease. How others are living with it, since it is so rare.

Prednisone... hmm well soon you will gain the weight back and probably more. Not the best choice IMHO for replacement as it will interfere with sleep and not give you a normal rhythm for the body but you only have to take it once a day.

Prednisone lasts 18-36 hours. A normal body has a rise in cortisol (which the pred is replacing) that is highest at roughly 8am, falls to roughly half in late afternoon and then falls to close to zero around midnight. Usually doctors give hydrocortisone or cortef (brand) so that you can mimic the normal body. Pred will take a couple of hours to kick in as well. If you start to have issues, change steroids.

You may also need florinef and also look to increase the salt in your diet. Part of this disease is that you cannot hold on to salt and need it so if you crave it, take it. I get salt tablets. Sweating can be bad and you are in a hot area - so you need them as well as hydration. That will help your blood pressure. You are not alone (there are quite a few, not as rare as you think!) and there is a lot to learn so you do not get yourself into trouble. Did you get yourself an emergency injenction and all? Made up a kit? Did you get other hormones checked? When one goes, sometimes others are effected.
i started out on prednisone and florinef but after 6 months i switched to hydrocortisone by itself and i feel MUCH better on the hydrocortisone (also called cortef). i highly recommend making the switch. I have more level energy and moods now, less water retention, more even weight gain, and better sleep. the only disadvantage to it is that you have to take it more than once a day. I take it twice, other people take it 3 times.

the best advice i got when i was diagnosed was to stay hydrated (which includes extra salt) and take medication routinely.

you need to be careful of getting infections and of vomiting. I have become more prone to ear infections. but in a year i have not had a crisis!

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