For Those On Florinef/fludrocortisone

[andybonse]

Does it impove any of these symptoms:

Light headedness

Dizziness

Shortness of breath

Fatigue/lethargic

Standing heart rate

Also how much does it increase your blood pressure by at rest, compared to without it?

Thank you.

[Dustbunni]

In my case, the Florinef helps with stabilizing my blood pressure regardless of my orthostatic position. This led to feeling less light-headed and allowing me to be fully upright for longer periods. It alone did not improve my heart rate or much else significantly.

In fact, at the 0.2mg dose I developed an overactive sympathetic response for everything except my blood pressure. It remained relatively even, though elevated on average. Temperature regulation and all else was truly shot. Oh and within a few months of starting the Florinef I began developing the puffy face and pigment changes as well. Cutting the dose in half (over a couple months) improved these closer to what I was used to pre-Florinef. In fact, it was just this morning I commented to my husband that the face puffiness is almost gone.

Personally, I'm working at reducing my dose further to see if I still need it with the daily IV saline therapy I'm getting. Judging by the side effects I've experienced just trying to increase or decrease by 0.025mg at a time, I cannot believe staying on this long term is a good idea for me. It's just horrible how such a tiny amount can wreak so much havoc.

Now that said, I am in no way, shape, or form suggesting you not try it, if that's the reason for your questions. It is a useful tool for many! I'm simply sharing my experience because when I began taking it, everyone I spoke with assured me the dose was small and I wouldn't likely experience many side effects. Unfortunately, this was not the case for me. I am very sensitive to medications. Not everyone is, but those who are might want to be cautious. I suggest starting on a very low dose (0.025 to 0.05) and work up slowly until you find a dose that improves your symptoms. This may require waiting a couple weeks after each dose change to allow any temporary side effects such as increased sweating, headaches, muscle cramps, etc. to end. Then up the dose again until you increase the dose but don't notice any increased improvement in symptoms. I let my doctor convince me to keep working up to the higher dose even though I wasn't noticing any additional improvement. It took longer to cut the dose by 0.1mg than to increase it to that amount and the temporary side effects both ways were really rough. But everyone is different. Unfortunately, the only way to know how you'll respond is to try it.

[Freaked]

My reaction to it could almost be described as allergic. I was on it for two days and my blood pressure and heart rate both went bananas (high). But I never really heard of anyone else react that badly. For most it seems to help low BP and lightheadedness, but not heart rate.

[MightyMouse]

For me, florinef improved my overall energy level, my heart rate and bp, which in turn helped with dizziness. However, my doctor describes me as an über responder, and we had to take it off my treatment list b/c my baseline bp shot too high even the smallest possible dose, cutting a .025 into 4 pieces with a pill cutter, and taking one of those pieces per day.

It's important to know that everyone responds somewhat differently. My doctor basically said some people are "responders" and others are not. Apparently, I certainly AM a responder, but too much of a good thing is a problem too.

[andybonse]

Thanks! I could do we some improvements. I just need aboost and think ill be ok.

[AllAboutPeace]

Florinef helped me with lightheadness, dizziness, fatigue, visual floaters, cognitive function (the ability to process information), helped with mornings to get me out of bed (prior to that I was completely lethargic in the mornings), helped me stay on my feet longer, increased my exercise tolerance, gave me back the ability to drive - which I hadn't been able to do for 9 months since onset.

I can't give you an answer on the standing HR because I think I had stopped monitoring it while upright by then, so I don't have the before and after comparison.

I never had BP spikes on Florinef. It raised my resting BP within a 10 point range, so 90's/50's to averaging100-110/60's.

A few things I've learned...(based on my own experience)

* dosage needs to be just right - I've adjusted dosages several times 0.125, 0.1, 0.075, 0.05, with drs approval to do so. Too little and it's not enough to be effective over time and too much brings on headaches and bloating.

*adjusting dosages, either up or down, needs to be done incrementally to avoid side effects.

*it took 4 full weeks to see maximal effects for me.

*I did have unpleasant side effects over the span of the first four or five days while my body adapted to the med - extra dizziness, mild abdominal discomfort, extra heart fluttering and a worse-than-usual headache. When I had the headache, I took half my dose the following day and my headache resolved. The next day I went back to the initial dosage (0.1) and the headache wasn't an issue again. Starting out at a lower dose may help with those early adjustments.

Florinef definitely improves my quality of life and when I stopped it for a month last summer (for an unsuccessful trial of Midodrine),I couldn't wait to get back on it. My only regret is that I didn't try it sooner.

It definitely doesn't work for everyone, but when it works it's really helpful.

[andybonse]

Thank you, thats a very positive write up!

My bp is normal, but my symptoms are that of low bp, so I assume my bp readings are not accurate of whats going on really. my dystolic bp is usually 50-70, so lower than id actually like. So if I could get that to 80 I'd be pretty chuffed and think it would really help me.

[gjensen]

Thank you, thats a very positive write up!

My bp is normal, but my symptoms are that of low bp, so I assume my bp readings are not accurate of whats going on really. my dystolic bp is usually 50-70, so lower than id actually like. So if I could get that to 80 I'd be pretty chuffed and think it would really help me.

That is similar to where I am at. Other than the initial drop upon standing, my blood pressure is usually normal. I am excluding my episodes, and periodic surges.

Still my symptoms are of low blood pressure. I can "faint" with normal blood pressure.

Apparently my body is working over time to keep the pressure up, but still does not get quite enough blood to my brain. That is my theory anyways.

[andybonse]

Yeah exactly the same as me,

I mean I can even have a heart rate increase of 10-15 and ill still feel crap. It's defiantly some sort of low blood pressure issue or lack of blood. So surely florinef should help. Will find out a guess lol.

[mountain girl]

Florinef 0.1 mg was added for me when the doctor put me on a beta blocker to lower my heart rate. My bps had always been on the low side, so when I started the beta blocker, it was so low I could not sit or stand for any time much at all. Within a day or so the Florinef was added and I felt better, not cured, but better. It has never made my blood pressure high, just counteracted the Bystolic so to speak so that it lowers my heart rate with out lowering my blood pressure too much. I feel okay with 100/60 where as before the florinef it was 90/50 and lower.

[andybonse]

Mountain girl, you might want to discuss upping the dose to 0.2mg with your doctor. This may help you more as people say they have had significant improvements from the 0.2mg dose.