Frustrated With Florinef! Pros And Cons???

[brethor9]

Hi all!

Recently I was started on the drug Florinef to help aid with my low blood volume and pooling issues. I have definately developed a love hate relationship with it. Currently I am taking a 1/4 tab a day I am trying to notch it up to 1/2 but find when I do that my head pressure gets worse, my breasts (sorry tmi) get incredibly sore, I get really irritated and agitated and just feel off. When I stop and dont take it at all the results really arent much better.

So my question is; how do you know when this drug is doing what its supposed to??? and do the side effetcs eventually get better?? The irritabilty and agitation are the worst....I'm a complete bear lately lol.

I am also taking a beta blocker and suppose it could be causing issues too; I'm just not sure which one is doing which??

Can you guys tell me the pros and cons, side effects of florinef??? so I have a better idea of whether I need to keep i going or not

Many Thanks

Bren

[shoegal]

Do you have an endocrine doctor? A prolactin level may be an idea, if your getting breast soreness. Just wonder if the med could aggravate a prolactinoma

Maybe a long shot. I have a script for the med but never took it, just muddling by with low BP

[Libby]

I tried florinef for a while. It might have helped a bit - I tend to black out/tunnel vision when I stand up and I think those weren't as bad - but at that dose it gave me these nagging headaches that weren't too bad pain-wise but lasted forever and made me want to rip someone's head off.

I can't say how long that lasts or if it goes away, though - I dropped florinef after 4 days of headaches (following a dose increase) and tried midodrine. Which I love. My blood pools to a ridiculous degree (purple feet. It's attractive.) and midodrine contracts the veins in your legs so I kind of figured that'd work for me better. Black outs basically don't happen when the med is in my system, which is my main signal that it's working.

I'd wager it's the florinef giving you problems, but I know beta blockers can give some people trouble. I've never had a problem with metoprolol, the one I'm on now, but I when I tried propranolol I spent the week passed out on the couch.

[Jan]

Here is my understanding of POTS.

For some people when they stand up, their blood pressure drops so their heart races to keep them from fainting. Those people are more likely to be helped by Florinef since if it increases the blood pressure, the heart won't have to race. If these people take a beta blocker, it will slow the heart and make them feel worse since they will be closer to fainting without the heart helping increase the blood pressure. The beta blocker can make their blood pressure drop way too low.

For some people, when they stand up, their hearts race and their blood pressure drops to slow the heart rate. These people benefit from a beta blocker, since it slows the heart, the blood pressure doesn't have to drop.

You may not even know which happens first until you try one or the other drug. I would suggest dropping one and trying one at a time. It could be the two interacting with each other causing you issues.

Beta blockers made it so I couldn't even stand up and gave me horrible headaches because my blood pressure dropped so low.

I love Florinef. It took a few weeks to help and months before it really helped, I think my body had to adjust to not having the sudden swings in BP/heart rate. I started on .1 mg once a day, went up to .2 after a couple of weeks, then when I got up to .3 at first things were much better than not, so my doc dropped me back to .2 which is where I have been for many years.

[abnel]

Hi Brethor9, sorry to hear you are experiencing the headaches too.

I have been on 0.1mg florinef since March this year although initially I was on 0.2mg florinef and getting pretty bad headaches. Once I dropped it back to 0.1mg the headaches went away. I was also initially quite agitated and more anxious. I think my heart was even spiking more during exercise. But over a one month period the feeling of agitation calmed down as my body adjusted to the drug.

The major benefit for me has been a reduction in the severity of the light-headedness and pre-syncope. This is apparently one of the symptoms it alleviates best, according to my POTS specialist. Also, my resting heart rate has come down a few notches which is particularly noticeable at night when I am trying to get to sleep. I think this is another potential benefit of the drug for those who experience inappropriate sinus tachycardia. In general, I think my orthostatic tolerance has improved and is noticabely better in the morning.

You've already listed the major cons, which include the headaches and agitation. Perhaps you could give it a few more weeks to see if your body adjusts and hopefully you'll just be left with the benefits. Best of luck.

[lizababy]

Florinef was the first thing they tried for me. At .1 every other day, my swelling was so bad that my gums were bleeding and I did not give it a chance.

Fast forward five months, I am on five 5mg tabs of midodrine a day and .05 of florinef for about the last week. I have some mild ankle swelling but this is the first time I have been able to handle the heat enough to even walk out of my house without collapsing. The ankle swelling does get very tender at times but it just means I do less walking and in this weather I cannot complain.

Bren, have you talked to your doctor about the combo midodrine florinef? I won't lie, I still have the headaches but I have no clue which med they come from. Yeah, the neck pain is pretty bad. But I am able to just fight through it all. I try to remember just how bad it is when I cannot even stand and say "Hey, look world! I can stand without passing out today! I am going to do everything I can!" and I just keep on going for as much as I can handle :-)