For Those That Tried Florinef

[sue1234]

I have an odd question(it seems alot of my questions are!).

I have a long history of off/on upper abdominal bloating. Back when I still had periods, I noticed that it was worse for the week before my period, and I believe that aldosterone is higher at that point.

Having recently tried a couple of times to take a beta blocker and end up feeling really bad, I quit taking it. I have spent a few days with that horrible upper abdominal bloating. Today it is letting up some. So, I was reading up on beta blockers and how they work. I knew it lowered renin, but my brain did not make the connection of it lowering aldosterone. So my thought is, once I quit it, did my renin, and thus aldosterone kick into gear?

So, my question to you that have tried Florinef and didn't like it, did you notice any abdominal bloating maybe from fluid retention? I remember some saying they had awful anxiety with it, and I'm having an AWFUL time these last few days with anxiety. I am grasping at straws here trying to understand the bloating. I can't afford to take any meds that cause this bloating, as I have a really hard time breathing when it is in full force. And of course, no gastro. doc has been able to explain my bloating, so now I'm wondering about too much fluid in my abdominal system. To be honest, I have noticed a decrease in urination during these times.

[HyperPOTS8]

Hi Sue, I take Florinef and don't have that problem, but I have read some people with similar issues reporting benefit from an abdominal binder.

[puppylove]

I'm on Florinef, I was trying to stop but I need to see my doctor first. Anyway, the reason I wanted to stop was because I was retaining fluid everywhere, but especially my stomach and legs.

[Guest Alex]

I also seem to be retaining fluid - particularly in my legs, hands and face. Come to think of it my abdomen is somewhat bigger as well.

Also, within a month of starting florinef I gained more than 10 lbs without any significant dietary changes.

I've decreased (on my own) the florinef from 0.2mg to 0.15 mg daily and have not noticed much of a difference.

On top of the fluid retention I'm also facing periodical spikes in BP that are anything but fun.

Hope this helps.

best,

Alex

[sue1234]

Thanks everyone. As far as the abdominal binder, I can't handle anything putting pressure on my abdomen. I know in theory it is supposed to help, and my doctor would like me to wear full length compression hose, but I just can't. I have to wear pants a size too big so that the waist will be loose around my waist. I've had this issue for many years, even before POTS. When I wear something binding, I cannot breathe. It is like compression on my waist translates to compression on my chest!

I have never tried Florinef, but I can safely say I will probably never try it.

[Guest maia]

I took florinef for almost a year i think. At first it was wonderful then-and i only realized it completely after i stopped taking it-that it caused a bunch of problems. horrible anxiety, horizontal and vertical vertigo, awful yeast infections, thrush, unable to function in the am's until i took it again and it kicked in, blood sugar issues, etc... took a long time to re adjust after i stopped too, but i stopped cold turkey and in hind sight definitely should not have done that. Not to scare anyone because it was wonderful for quite a while and i probably have some yet undiagnosed reason it sent me wonky.

I didnt have any issues with fluid retention or upper abdominal bloating. Your comment about uppr abdominal bloating is interesting because i now have that-and not taking any meds- and its making my breathing bad and i think giving me palpitations, so im glad you brought it up. I didnt know that could be part of POTS.

I am doing accupuncture and herbals and some have helped with it, others not so i we are trying to figure out which ones work best and i have an upper endo to be scheduled to see if they can figure out why the bloating and pressure is there. I think they are going to check out my spleen, pancreas, gallbladder too... It definitely feels like there is too much something there so im sorry to hear you are experiencing it too, and glad to hear that it may be related to the pots. hopefully we can have this figured out. In the mean time i started taking digestive enzymes. Im not sure yet, but i think it may be helping.