Florinef

[Lenna]

Hi,

For anyone who has had success using Florinef, in what way does it make you feel better? Are you less dizzy? Are you less fatigued? I understand the mechanism of Florinef but how does that translate into improved functioning? Some people write that it's such an important medication for them. I'd love more info about that. Thanks!

[Christy_D]

For my son, he is rarely dizzy. Without it he was dizzy a lot, also when he was on to low of a dose. He currently takes .1mg daily and that takes care of it. It doesn't help his fatigue or any other issue, but at least the dizziness is at bay.

Christy

[juliegee]

For me, it improved my appetite. i wasn't able to eat much before I started taking it. It also gave me increased energy, helped dramatically with lightheadedness and stamina.

Julie

[Kyler]

It helped my son with his BP dropping drastically when he stood. The problem was that it wired him to the point that he only slept for 2 hours /night for the 2 weeks when he was on it even at a very low dose like 0.025. It certainly decreased the fatigue but now he only takes it when he wants to have a sleepover so he can be like normal kids and stay awake. He started going crazy from lack of sleep. I'm glad that you posted this because I think that we may try it again now that he is much worse than the last time we tried it. Thank You for the reminder.

[heathmcev]

It helps my orthostatic dizziness (in combo with mestinon). I still have OH but it's now limited to my most POTSy days and not as constant as before. Any improvement is good! I was worried about it raising my BP too much after reading posts on here, and so raised it very slowly - but I was fine at .2mg and only lowered to .1mg when I had to start hydrocortisone for central adrenal insufficiency (their effects overlap a bit). It hasn't helped my fatigue, but at least I haven't had any bad sfx.

If you try it, I'd still recommend starting it very slowly and working your way up to ensure your BP doesn't go up too much... since we are all so different. Best of luck!!

[Jan]

For me Florinef keeps my blood pressure from dropping very low. This in turn keeps my heart rate from racing. This prevents me from feeling like I am going to faint from low blood pressure, and keeps me from feeling anxious, our of breath and the other symptoms from a racing heart.

It took a few weeks for me to notice it working, I think my body had to adjust to the differences in BP and heart rate. I take .1mg at 6AM, go back to bed and then take another when I get up for the day, around noon. It is not recommended to take it before bed because it is a hormone that is usually released in the AM in normal people and can keep you awake. If I forget my second dose for the day, I am really dizzy by around 4PM and that usually alerts me to the fact that I missed a dose.

[Lenna]

Thanks to everyone for your replies. It sounds like Florinef is most helpful with dizziness. I think that dizziness is a minor problem for Danny these days; fatigue is his major battle. It also sounds like you have to tread a fine line between increased energy and insomnia with Florinef. I'm not sure this is the best approach for Dan. Thanks for helping me out with this!

Lenna