Your Experiences With Florinef (Fludrocortisone)

[Foggy01]

Hey,

I really need to hear other peoples experiences with this drug.

What I'm interested in is:

Has anyone with the "hyperadrenergic POTS" subtype ever gone on it?

If so what was your BP at rest before and after and what dose did your doctor recommend?

Also for non-hyperadrenergic pots sufferers: What was your BP before and after going on it and what dose were you put on?

Also did your doctor advice you to take extra salt and water with it? If so how much?

And if you don't mind I was wondering when you started to see an improvement?

I'm having problems with lightheadedness, coldness, numbness, dim vision and weakness now and I don't really know what to do. I'm considering asking my doctor about this drug but I'd like to know other peoples experiences first. Thanks.

[jangle]

Well I'm still going through it, but here's my experience so far.

I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress.

I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink.

In the first few weeks I noticed some mild improvement, but that just might have been me thinking it.

Now well into my 5th week on this dose I'm noticing my lightheadedness significantly decrease, it's definitely not me just imagining it. I feel my headaches have decreased as well. Overall I'd say I've made a noticeable improvement.

I still would like to improve from this point, but right now my symptoms are considered mild. I'm thinking about just trying aerobic exercise to see if I can get that last bit of improvement rather than upping the dose.

[Foggy01]

Well I'm still going through it, but here's my experience so far.

I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress.

I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink.

In the first few weeks I noticed some mild improvement, but that just might have been me thinking it.

Now well into my 5th week on this dose I'm noticing my lightheadedness significantly decrease, it's definitely not me just imagining it. I feel my headaches have decreased as well. Overall I'd say I've made a noticeable improvement.

I still would like to improve from this point, but right now my symptoms are considered mild. I'm thinking about just trying aerobic exercise to see if I can get that last bit of improvement rather than upping the dose.

If I were to increase the dosage from here, it would probably be to .15 mg and not the full .2 mg.

Jangle you seem to know a lot about POTS. I was wondering what you think about blood volume and POTS. Do you most people with POTS, even the hyperadrenergic variant, have low blood volume?

I'm wondering if I have it and if increasing volume could help me. Sadly there doesn't seem to be a way to test for this which is a pity. I guess I'll just have to ask my doctor if they think it'd be worth a shot.

Btw when you say your blood pressure was prehypertensive what range is this exactly? Also was that before or now?

[jangle]

Well I'm still going through it, but here's my experience so far.

I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress.

I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink.

In the first few weeks I noticed some mild improvement, but that just might have been me thinking it.

Now well into my 5th week on this dose I'm noticing my lightheadedness significantly decrease, it's definitely not me just imagining it. I feel my headaches have decreased as well. Overall I'd say I've made a noticeable improvement.

I still would like to improve from this point, but right now my symptoms are considered mild. I'm thinking about just trying aerobic exercise to see if I can get that last bit of improvement rather than upping the dose.

If I were to increase the dosage from here, it would probably be to .15 mg and not the full .2 mg.

Jangle you seem to know a lot about POTS. I was wondering what you think about blood volume and POTS. Do you most people with POTS, even the hyperadrenergic variant, have low blood volume?

I'm wondering if I have it and if increasing volume could help me. Sadly there doesn't seem to be a way to test for this which is a pity. I guess I'll just have to ask my doctor if they think it'd be worth a shot.

Btw when you say your blood pressure was prehypertensive what range is this exactly? Also was that before or now?

Prehypertensive range is the top number being between 120-139 mmHg.

Hyperadrenergic activity most likely has a correlation with disrupting the RAAS (Renin angiotensin aldosterone system), which are a set of hormones with many different and complex interactions and effects.

It's difficult to understand exactly what's going on, but I can conceive that this disruption could lead to decreased blood volume among other things.

It's difficult to generalize with POTS population because there can be many different things going wrong that end with relatively the same set of symptomalogy. For people with EDS, neuropathic denervation, MS, or autoimmune ACHR, it's probably less likely (though not impossible) that the lightheadedness stems from just low blood volume, with the context being a larger global vascular dysfunction (EDS the presence of weakened venuous return, neuropathic denervation leading to inadequate venuous return to the heart, and autoimmune causing all kinds of ***-ness)

However, the data presented is that IV saline is effective for a wide variety of POTS patients and whether this is because it is correcting some central deficit or it's boosting a compensatory mechanism to combat an inadequacy elsewhere is difficult to say. In the end one should aim for symptomatic improvement and by methods of Florinef which is a relatively safe medication that achieves the same effects of IV saline, is probably a good first line treatment for POTS.