Can Florinef Be Taken On An As-Needed Basis?

[blueroses79]

So, my cardiologist and neurologist have come to the end of their scientific knowledge, and told me a prescription for Florinef is the closest thing to a solution I'm going to get for at least 50 years.... (Seriously.) But I'm hesitant to start taking it, since it seems to give a lot of people headaches, and migraines are actually a much bigger problem for me than dizziness is. And my orthostatic hypotension is really only a problem for me when I've had no sleep, or when it's humid. So I'm wondering if it's something I can take just when I need it.... or whether it's like antidepressants in being something you shouldn't start and stop.

[Brye]

Pretty sure it's not something you should be starting and stopping abruptly. It's a drug you're supposed to wean off of even at low doses. I don't get headaches from it. Have you tried taking it yet? Maybe you won't have any troubles with it. If you start at a very small dose you can kind of see how you'll respond. I don't like the fluid retention much but the benefits for me outweigh the side effects.

Brye

[yogini]

You need to take florinef everyday, but you may want to try midodrine - that increases BP and can be taken as needed. If your docs are telling you that there are no other options, maybe you want to find a POTS specialist who can work with you to try different treatments. The dinet website has good info about the many options.

[Rachel]

Florinef takes time to build up in your system and help your body retain fluids. It wouldn't be beneficial to just take it on a "bad day" or "bad week." Fluid and salt loading would be something you could do more of when necessary.

If you haven't tried midodrine before, that might be a good option for you. It is short acting. It helps almost immediately, and then it is pretty much gone 4 hours later. It would be safe to take midodrine here and there as your body needs it.

A couple of years ago I thought I was on my last option med. Since then I have found some more treatment options. Keep searching and looking for answers. There may still be a medication, a supplement, or some other "help" out there for you.

Rachel

[lissy]

Well I was told something totally different once it builds up in your system (say 6 months ) you can have maintenance doses like during cycles ,extreme stress on your body ,and during the times of having a virus...

And I was told this at Cleveland Clinic

Lissy

[Victoria]

I'm taking Florinef with fair results, but I had to titrate up in teeny, tiny doses (nibbles, actually). I only take 1/2 of a 0.1 mg tablet.

Florinef is a corticosteroid and it helps to control the amount of sodium and fluids in your body. I lose sodium in my urine, and it does help by decreasing the amount I excrete.

Because it's a corticosteroid I definitely wouldn't take it or stop taking it on an as needed basis. That could be very dangerous.

[Yolaclover]

I just started back on florinef, started with half •1 and I had headache first two days but now seem fine. You could try it for a while and see how it goes, for me, last time, it was amazing, felt like my pre-pots self. GL!

[redoctober]

My Florinef headaches have gone away on .05mg...but then again, I'm not sure if it's actually working anymore or not...since I'm getting HR's in the 90's again in the morning.

[blueroses79]

Thanks for your replies! I forgot that I needed to subscribe to the thread to get email notifications of responses. I'm going to try some licorice root tea to test the waters. Given that my sodium is normal, my potassium is already low, and that I'm super estrogen-sensitive and have prehypertension BP most of the time, I'm very hesitant about Florinef.

I'm thinking about traveling to see a specialist, too, as I don't really want to keep seeing this Dr. even if I do end up using Florinef. She had a point--but having such a bizarre nervous system makes me super paranoid about anything I do to affect it. (And if I do try it, I'm definitely cutting the pills into quarters!)