Florinef Questions

[PetuniasMom]

My daughter takes florinef, and has had some improvement in her symptoms over the past 9 months or so that she has been on it. For the last couple of weeks, and without alot of detail, she hasn't been doing well.

I am wondering if your body eventually builds a tolerance to florinef? For those of you that take it, how much do you take and what time of day do you take it?

[Katybug]

Until last month I was taking it. .1 mg per day in the morning (couldn't tolerate more than that.) I was on it for over a year and actually felt like the longer I was it the more good it did. But, if I didn't have enough salt intake, it did not work as well. So, if I wasn't paying attention and let my salt intake fall off, then would start to experience polyuria and dehydration (no matter how much I drank.)

[ramakentesh]

Main thing ive noticed is that drinking caffeine negates its effects as they actually oppose each other (one holds onto to volume via salt, the other makes you drop it via salt).

[songcanary]

I have been on it for seven months now and I am like Katybug, I've improved with time. I take 0.05 mg once every other day in the morning with food.

[ramakentesh]

Overlal I have found it very helpful. Particularly for dizziness which was my worst symptom. ive only been on it for one month so far - tapering up from 1/4 of a tab to 2/3 of a tab with the aim of getting to 1 full tab.

[Hoosierfan]

Songcanary, can I ask why you take it every other day? I've noticed something curious with florinef when I've tapered...that a couple of times that I went too low, and went back up, the first day back up was ok, but the second day back up was GREAT, and then the third day I got too much in my system (kind of like my body had adjusted somewhat to the lower dose, so that going back up a full dose was too much, but that the cut I took was also too much). Wondering if all this means that as I taper down an every other day dosing schedule would work better for me.

[songcanary]

Well, I am just following the original dosing instructions from my doctor. When I first started it, I took .1 mg once a day for two weeks, then 0.05 mg once a day for a week, then the maintenance dose is 0.05 once every other day.

She said initially the body acts like a sponge and gets you hydrated, then she lowers the maintenance dose to avoid side efffects. This regimen has really worked for me. But my BP doesn't bottom out like some do, maybe that's the difference in the reaction, I don't know. I hope you find something that works for you!

[ramakentesh]

I find it hard to adjust - changes in dosage can effect me by making me jittery in the morning a little. I noticed this initially and now on the increased dose.

[ramakentesh]

Notiecd any benefit with LDN?

[songcanary]

The LDN increases my energy levels and reduces pain. It is wonderful. But it really hasn't had an effect on my dys symptoms, at least none that I notice.

[jpjd59]

Petunia's Mom:

My daughter also was on Florinef (.1 mg) and didn't notice any difference in symptoms. The doctor increased the doseage to .1 mg twice a day and she felt better for approximately 2 weeks and then started to have MAJOR depression. She had to wean off Florinef and, thankfully with some time, the depression went away. Too bad, because it did seem to help the POTS symptoms but the depression symptoms were just too scary to have her stay on the med.