Annaliese Posted March 19, 2012 Report Share Posted March 19, 2012 For those that have been using florinef more than a few months, have you noticed you've had to dose escalate? Just wondering if your kidneys eventually adapt and produce less renin and aldosterone such that the florinef dose needs to be increased. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 19, 2012 Report Share Posted March 19, 2012 I have been on florinef now since July I want to say. I started on .1 and it didn't seem to help much, I was moved to .2 shortly after. If anything, since time has passed, it seems like the florinef is working better. It took over a month to begin working. This could also have to do with disease course improvement, but my bp is going up and my hr is going down. Additionally, my blood sodium levels popped way up, so I know it is working. I took a beta blocker before florinef and it seemed like my body got used to it and that I would progressively need more. So I kind of understand what you mean by tolerance, but haven't had that yet with the florinef. In fact, I am considering reducing mine soon. Quote Link to comment Share on other sites More sharing options...
E246 Posted March 19, 2012 Report Share Posted March 19, 2012 Yes, I have wondered the same. I don't want to have to be on it forever but when i reduce the dose my symptoms return slightly. At the moment I only take .033mg - a third of a tablet. It seems to be the right does for me as it pushes my bp up too much otherwise. The other problem for me is it is causing slight depression - i think this is quite unusual.So like you Annaliese I want to know how easily people increase and decrease doses. Quote Link to comment Share on other sites More sharing options...
Schorobi Posted March 19, 2012 Report Share Posted March 19, 2012 I have been taking 0.2 mg daily since October. Still works great for me in fact I am trying to cut my dose to see of I can get by with less Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted March 20, 2012 Report Share Posted March 20, 2012 I'm currently doing the Florinef dance (see my other posts). I was put on it in Jan. 2011 because I was having breakthrough hypotensive episodes (turns out my main bp med was changed to a generic w/o my knowledge). I'm now in the process of trying to wean down / off, because it gives me really bad headaches and brain fog that I can't shake. I was on .1 for about 6 months, then .15 for about another 4 months. Once I was back on the brand of my main bp med, my bp went back up enough points that doc was ok with tapering down. I went to .1 in October and stayed there for a few months while we were monkeying with other things. Now I'm on a schedule to reduce by .025 every 4-6 weeks. I tried it faster in January (.05 every 2 weeks), but I crashed and burned. Once you are on florinef for awhile (more than a couple of months), you need to taper slowly b/c your adrenals have atrophied. That seems to be what has happened to me. As I've tapered, I've kept religious track of my bp 3 x a day, and it has been consistently ~105/65 (which is a good target for me) even when I have reduced. I'm optomistic that this shows that my adrenals are "healing!" When I tried to go faster, I got into the low 90s/mid-50s, which is presyncope for me! Quote Link to comment Share on other sites More sharing options...
E246 Posted March 20, 2012 Report Share Posted March 20, 2012 It's been a godsend but has anyone not been able to get their adrenals to start back up again? I don't know what the long term use side effects are?However when I reduce the dose i remember absolutely why I take it and continue on my normal dose 1/3 Tablet a day. Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted March 20, 2012 Report Share Posted March 20, 2012 Emma, I think when you ask about adrenals not "starting up" again, it begs the question of whether there is some underlying adrenal insufficiency for that particular patient. If adrenals aren't working in the first place, don't think you could get them to "start up" again. But, assuming there isn't, I haven't seen anything to suggest that the adrenals don't start working again (I had that question as well). I've been on Florinef 3 separate times -- in 2007 for about 4 months, in 2008 / 2009 for about 6 months, and this time around we're at about 14 months. Both times before my adrenals recovered, and doc doesn't think it will be any different this time, but we just have to go slow. I don't have any underlying adrenal insufficiency that I've been diagnosed with. She's a PCP, not an endocrinologist, so take that with a grain of salt! I'd be interested in what endos have said. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 21, 2012 Author Report Share Posted March 21, 2012 Thanks for your posts everyone : ) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2012 Report Share Posted March 21, 2012 anyone feel kinda edgey at the start of taking florinef? Quote Link to comment Share on other sites More sharing options...
E246 Posted March 21, 2012 Report Share Posted March 21, 2012 Yes, a bit manic so i kept the dose low. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 21, 2012 Report Share Posted March 21, 2012 My son took .1 mg for 2 years without problem. Quote Link to comment Share on other sites More sharing options...
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