Fludrocortisone/Florinef Experience

[Trying]

Does .05mg or .1mg or .2mg per day of fludrocortisone suppress your own aldosterone production so that you must taper off slowly in order to get your own aldosterone to start working again?

In your experience, what fludrocortisone/florinef dose did you take, if .1mg did not help at all, were you increased to .2mg per day, was potassium also prescribed and what amount, was fludro for POTS or orthostatic hypotension, for how long did you take it, and did it help, if so, what symptoms did it help, did you taper off and was it difficult and how long did it take?

 

[Lily]

I have been taking florinef for about a year for POTS.  I take 0.1 mg per day, but I ramped up slowly based on reading about other peoples experiences.  Potassium was not prescribed as in taking another pill from the pharmacy, but my doctor did tell me to make sure to eat foods high in potassium.    It helps to bulk out my blood volume so that I feel less lightheaded.  Also my sympathetic nervous system doesn't seem to go on overdrive as much because the blood volume is higher, so I feel less fatigue and less hyperandrenergic symptoms.  I can't answer your questions about stopping, or about aldosterone production.

[bombsh3ll]

On 5/24/2019 at 9:24 PM, Trying said:

Does .05mg or .1mg or .2mg per day of fludrocortisone suppress your own aldosterone production so that you must taper off slowly in order to get your own aldosterone to start working again?

In your experience, what fludrocortisone/florinef dose did you take, if .1mg did not help at all, were you increased to .2mg per day, was potassium also prescribed and what amount, was fludro for POTS or orthostatic hypotension, for how long did you take it, and did it help, if so, what symptoms did it help, did you taper off and was it difficult and how long did it take?

Any dose of florinef can potentially suppress your own aldosterone (but NOT cortisol) production. This has been seen in studies after just a few days, however it is rapidly reversible after short duration. The length of time taken is also important, as is whether the patient was producing adequate aldosterone in the first place before starting the drug. 

As a general rule, if it is causing intolerable side effects or the patient's blood pressure is dangerously high, it may need to be stopped straight away. In the former situation, chances are the patient would not have been on it long enough to need a taper, and in the latter, they would (or should) be closely monitored in the period after stopping. 

If someone has been taking it for more than 3-4 weeks, a gradual taper is advised. Many people have simply stopped abruptly without ill effects, but anecdotally a lot of people struggle with an abrupt stop or too rapid taper.

I would say that if the reason for coming off it is lack of effectiveness (after an appropriate duration/dose has been reached as it can take some time for the benefits to be seen) rather than due to it causing any particular problem, then a slow and gradual taper would be best.  

B xxx

[Guest ANCY]

I was on Florinef .2-.5 a day for many years, along with midodrine. Almost always needed some amount of potassium supplementation. End of last year was on .1 3 x a day with 20meq potassium supplementation. The dosing of my Florinef and potassium has always fluctuated depending on what my blood pressure and other things were doing. I have severe gastroperesis so even off florinef i am still on 15 mEq  potassium, at one point I was on 40 mEq a day but that meant I had to be monitored more closely. The goal my Drs had with using florinef was to bring up my baseline blood pressure, then use the midodrine prn for more regulatory control. Florinef's effectiveness has always been dependant on my having adequate fluid intake which is always a struggle for me.  This year my cardiologist switched me to Northera and I have been able to slowly taper off the Florinef while titrating up on the Northera dose. I do get better stability with the Northera, it's effectiveness is not dampened by lack of fluids which is a huge benefit for me.  I also need less prn Midodrine with it. However Both florinef and Northera are outmatched by the effectiveness of the iv fluids I've been getting for around 2 years now. 

[Dale H]

I've been on .2mg florinef daily for 5 months now. It has helped with my POTS symptoms along with increased sodium and fluid intake. I've been getting bad headaches and supine hypertension when I go to bed. Twice I've tried to taper from .2mg to .15mg, made it 6 days once, but my POTS got so bad I went back to .2mg.

I've been told by a very knowledgeable NP that has lived with POTS for 8 years that florinef is a crutch and I should be able to taper off of it by combining adequate lower body exercise, cardio conditioning and keeping up my sodium and water intake.

While on florinef my pulse spread from lying to standing will get down to 8-12bpm, when I tried to taper my pulse spread approached 30bpm and I was quite POTSY feeling.

My labs keep coming back fine on potassium, initially my potassium was low so I take 20meq every 3 days and that seems to keep me steady. I'm hoping to try another florinef taper after I see my doc again next week. The headaches are getting old and I've had increased palpitations that I wonder if are caused by the supine hypertension. Palpitations get real bad when I lie down and go away when I stand.