Adrenal Insufficiency Support Group

I just started taking .5mg Florinef and I'm curious how many of you w/ secondary are taking it and how much along with how much HC/Pred you take? Did you notice a sigificant differnce with the addition of Florinef?

Currently I take 30mg HC and .5mg Florinef. I'm 5'6" 158lbs.

Thanks,

Tasha

I'm personally seriously intolerant of florinef unfortunately. I'm secondary, and one of my biggest problems is that my Aldosterone is extremely low. Hence I feel VERY heavy and weak when i stand/walk around etc. Orthostatic intolerance is bad. (Florinef causes a tremendous 8-12hr incapacitating migraine, have never got past 3 days on it.)

Near AI DX, before HC, when i stood up my heart rate would double from 80 to 160 within 10-30 seconds, and BP would drop 20-30 points. Over a period on HC alone, that aspect improved a lot.

I now can walk around my house and do things without the rate increasing near that much. However, I still feel very heavy and weak standing or even sitting. This limits me being able to go anywhere unless I seriously overdose on HC, like an extra 15-20mg just to go out down the street in the car.

If I could take florinef I could absolutely do a lot more, and probably decrease my HC dose even, as currently I have to take small extra bits all over the place any time I stand, just to cook dinner or do minor cleaning etc. A lot of people even secondaries I know have been able to cope better and/or reduce dose by taking it.

If you can tolerate it and it helps, it's very worthwhile!

Yep - my Aldosterone measured 1 at my last blood draw. Florinef seems to be helping - haven't noticed any side effects....although it's early in the game yet. Just started taking it last week.

Noticed you're gluten/dairy/sugar free. KUDOS!!! That is so awesome. I am gluten free and working on the sugar free bit. I'm such a sugar junkie and I know it has a huge impact on my energy levels (lack there of). No dairy? Just curious why? Is this something for the AI or an allergy?

Hey Chris

What form does the intolerance of florinef take? Also wonder if you can make up for some of that problem with sodium salt.

Bob

Well, I now have a script for florinef & need to get it filled.

I was warned it could caused a headache for a *couple* of weeks by my endocrinologist.

I've read some stuff online about people who start slowly on a fraction of the amount & work their way up...

Want to hear from those of you who take it

Catia,

Am I right in thinking that your doc gave you only florinef and not cortisol replacement? Find another doc if that's the case.

Deb

At this point my Dr says I do not have a "cortisol issue", believes it's just hypoaldosteronism. my most recent labs have not been interperated yet.

My aldosterone came back 0 but I can't really tolerate Florinef- BP goes through the roof so does heart rate.

I am secondary (hypopit) and take a low dose of florinef (.1 mg 3x a week). It has helped me alot.

I don't take HC. I wonder if a smaller dose might be better?

My BP has gone from 80s/50s to 100ish/over 60.

Not sure why it only increases my top number?

I feel like blacking out maybe only 1 in 50 times that I stand up instead of every time

I instantly gained 5 lbs and kept it (I needed it)

and my dead zone times are reduced for sure.

Tho I still get them.

I have been on cortef for over nine years for SAI, and on and off florinef during that time. I have low blood pressure even now (90/60, fluctuating around there) but there have been times when I've really suffered with postural hypotension (sidenote: waaaayyy before the AI diagnosis, the world went black and I collapsed at my wedding! So I've always been a bit on the wimpy side when under extreme stress and prolly just got worse over time x stress), and docs have added the florinef to help. I would go on it and feel better, but always took myself back off because I didn't like the weight gain. It's been a while since the last time I was on it (still have half a bottle of pills that I haven't thrown away, just in case). I prefer trying to deal with lightheadedness with salt intake, but it's a delicate balance for me. Too much salt, like the time I drank soup broth for the sodium, and I get hyper-startley (ha, yes, spellcheck, I know that's not a word...). All about listening to my body and learning how to respond (a constant work in progress!).