I am on my second round of kidney stones in 5 weeks. (had some tests today no results yet)

In the meantime, I have been taking 30mg of cortef and .1 of florinef for a year. I have been having swelling issues off and on, but lately since the kidney stones have flared adn the swelling has been awful.
Really bad in the ankles and legs.
Blood pressure is great 110/60
My Endo wants me to taper off of the florinef. I am scared.
It was such a long road to feel better. I am not dizzy anymore etc.
I have to start with one every other day for two weeks then one day on two off for another two weeks.
Anyone out there have to discontinue use of florinef and did you do ok.
I am just scared to mess with it, but I am really swollen. Just not sure what the cause is.:confused:

I took .1 Florinef for over a year after I was first diagnosed with secondary Addison's. Because it was secondary, I began to question whether or not I needed the Florinef. Finally, my endo said I could try going without it. His instructions were to check my blood pressure often to be sure it wasn't dropping, and to watch for other signs that I still needed the Florinef. I did not taper off, but just stopped taking it, and I was completely fine. That was almost four years ago, and I haven't needed it. I am assuming you have secondary -- as opposed to primary -- Addison's Disease. You probably need the Florinef if you are primary. Good luck!

Karen

I am assuming that I am secondary. My cortisol numbers are caused from the adrenal glands but the antibody test came back negative.
I am on my taper off schedule today. Hopefully it will go ok.
I too am worried that I may not need all of what I am on, but I get so dizzy whenever they try to take it down.

Did you have any lightheadness when you stopped taking the florinef

No, I didn't. I was just fine. Hope you will be, too!

Well day one is almost over and i am not dizzy, but I have noticed a mood problem. Very touchy. Hopefully this will pass.

I've pulled way back on florinef in the last 2 months. I've been taking between 0.15 and 0.25 for almost 2 years now. When I took an IV that contained glycyrrhizinate, my BP skyrocketed (to normal - haha). So, with my MD's approval, I pulled back on the Florinef, to 0.05. Since stopping the IVs, I've supplemented with oral licorice root and am able to maintain a 107/74 BP continuing at 0.05 Florinef. The plus side is... the 10-15 lbs I picked up going from 0.1 to 0.2, and was impossible to lose... dropped off in 3 weeks! Gotta find one with glycyrrhizinate (i.e. non-deglycyrrhizinated), or you don't get the active ingredient you need. Also, I switched brands and my BP plummeted, so I went back to the original brand (can we name brands on this board?)

p.s. my guess is that this means my adrenals can be coaxed into doing what they're supposed to, which we'd given up hope for. My MD and I had landed on a dx of primary, but I'm second-guessing that now... should I?