Benefits from florinef (fludrocortisone) - do they last?

[bombsh3ll]

I am currently debating whether to give low dose fludrocortisone another try as a volume booster. I had great effects from licorice root which lasted about a year then wore off. Do people experience this with florinef also after a honeymoon period? I have found the following statements in my research regarding the drug suggesting that the volume expansion is not sustained long term:

"Fludrocortisone binds to the aldosterone receptor, which increases activity of the distal tubule of the kidney, causing enhanced sodium ion and water transport into the plasma, and increasing urinary excretion of potassium and hydrogen ions (Campbell 1975). Its effect on alleviating orthostatic hypotension is largely thought to be modulated through these actions. With chronic use, a BP‐raising effect may persist, even though sodium retention and overall plasma volume normalizes through increased peripheral vascular resistance (Armstrong 1991; Chobanian 1979; Freeman 2003; Hoeldtke 1993). Other potential mechanisms may include sensitization of the vasculature to angiotensin II and norepinephrine (Hickler 1959; Van Lieshout 2000)."

and

"This pharmacologic action leads to sodium and water retention, but this effect is not targeted to the intravascular space and is only transient. It is postulated that its improvement in orthostatic hypotension is due to potentiation of the pressor effects of endogenous vasoconstrictors such as norepinephrine and angiotensin II. "

If you currently or have ever benefited from florinef I would love to know about this. I only want volume expansion, am vasoconstricted enough!

I don't understand why the volume effect would only be transient in dysautonomia yet it is good enough as a lifelong aldosterone replacement in Addisons patients, who like me produce no aldosterone.

Many thanks!

B xxx

[toomanyproblems]

I can't help with your survey since I have Addison's but I'm wondering which ref goes with the last statement about the transient intravascular space fluid replacement.

[bombsh3ll]

4 minutes ago, toomanyproblems said:

I can't help with your survey since I have Addison's but I'm wondering which ref goes with the last statement about the transient intravascular space fluid replacement.

This was from Horacio Kaufmann, Italo Biaggioni, inBrocklehurst's Textbook of Geriatric Medicine and Gerontology (Seventh Edition), 2010

B x

 

[bombsh3ll]

Encouraging to see someone still going strong on F. I wonder if there is a variable time course for the drop off in volume enhancement? I found the following study:  http://www.clinsci.org/content/61/s7/97s which seems to indicate this differs between individuals, with younger people enjoying increased cardiac output for longer. (I'm 39, was 34 at onset) so would be closer to the younger patients in this study, but realize I am probably older than the typically portrayed POTS female getting it in teens/20's. 

B xxx

[Pistol]

Hi @bombsh3ll - I am sure you know this but I just wanted to point out to other readers that the usual age-of-onset for POTS is between 15 and 50 years old. I myself had SOME symptoms in my teens but did not get full-blown POTS until I was 42 y.o. My mother and sisters also did not get severely sick until their late 40's. So - I believe it is possible to live with minimal symptoms in younger age due to ability to compensate but in some cases this ability fades as we get older. 

[bombsh3ll]

51 minutes ago, Pistol said:

Hi @bombsh3ll - I am sure you know this but I just wanted to point out to other readers that the usual age-of-onset for POTS is between 15 and 50 years old. I myself had SOME symptoms in my teens but did not get full-blown POTS until I was 42 y.o. My mother and sisters also did not get severely sick until their late 40's. So - I believe it is possible to live with minimal symptoms in younger age due to ability to compensate but in some cases this ability fades as we get older. 

Yes, I do notice on this site more "older" POTSIES. I consider myself lucky to have got to the age I did before getting sick. Did you ever try florinef at any point before being identified as hyperadrenergic?

B xxx

[Clb75]

I’ve been taking florinef for 5 years. It’s been really helpful for me and I’m still getting a benefit from it. I have NCS too, so it helps my syncope and has brought my BP up. I’m still dizzy when upright and housebound, but I was bedbound before. 

[Pistol]

17 hours ago, bombsh3ll said:

Did you ever try florinef at any point before being identified as hyperadrenergic?

No - this was never an option for me, my specialist said that this is not indicated for the type of hyper-POTS I have. I just did some research on hyperadrenergic POTS and I was blown away to find that there are 5 known types of hyper-POTS! Being that this subtype only affects 10% of POTS patients - that is a lot of sub-sub-types!!! 

[mehganb81]

Do you have an article link for types of hyperpots?

[bombsh3ll]

15 hours ago, Clb75 said:

I’ve been taking florinef for 5 years. It’s been really helpful for me and I’m still getting a benefit from it. I have NCS too, so it helps my syncope and has brought my BP up. I’m still dizzy when upright and housebound, but I was bedbound before. 

That's really good to know! It is hard to tell whether I am more presyncopal or not now that I am completely clear of licorice root. My BPs are generally normal now & electrolytes holding steady although sodium remains bottom of range. On paper I should feel great, but of course we can't measure the things that really mater like cardiac output & cerebral perfusion. What dose do you take and does/did it cause any headaches or worsened adrenergic symptoms?

 

3 hours ago, Pistol said:

blown away to find that there are 5 known types of hyper-POTS!

Blimey I didn't know that either. I would also love to read about these and see if any fit me, if you have a link to any info. I "feel" hyperadrenergic and appear very vasoconstricted, and my BP goes up rather than down when I stand. I am still awaiting blood levels of catecholamines from my recent tilt test. I had blood drawn supine, then after 10 minutes of 60 degrees tilt. That center only tilts to 60 degrees whereas I know others tilt to a higher angle so how a point of reference can be determined with different test conditions I don't know. 

Is the "Hyperadrenergic" label applied based on blood catecholamines, clinical picture or both? Subtypes are not really determined in the UK, it is just "POTS". I tend to think though that my SNS activation is appropriate compensation for low blood volume rather than a primary state. 

B xxx

[p8d]

I am an older onset hyper person, it came on two years post menopause after a viral illness.  I took florinef for 3 years until my BP started going into crisis territory last summer.  The two things I was told to stop immediately was florinef and HRT.  My BP generally is fairly low in the am but climbs during the day and I am incredibly, incredibly sensitive to oral fluids.  I seem to have developed a robust gastropressor effect.  

@PistolI too would love to read about the five types of hyper pots.

[Pistol]

@p8d, @bombsh3ll @mehganb81 

here is the article :  https://ww2.mc.vanderbilt.edu/adc/38938

specifically interesting to me is this quote: 

The hyperadrenergic subgroup of OI is characterized by a clinical spectrum including attenuated plasma renin activity and aldosterone, reduced supine blood volume coupled with dynamic orthostatic hypovolemia, elevated plasma norepinephrine and epinephrine, impaired clearance of norepinephrine from the circulation and evidence of partial dysautonomia.

 

[bombsh3ll]

3 hours ago, p8d said:

The two things I was told to stop immediately was florinef and HRT.

That's really interesting because the two things I am considering retrying just now are florinef and combined hormonal birth control.

Did you find the HRT helpful POTS wise or were you on it already and didn't notice any difference?

I stopped licorice root because I felt it was no longer helping and also I was having very high BP spikes which have since lessened greatly although I am still presyncopal all the time. I ditched the Nuva ring (estrogen and progestin) which I used continuously to avoid menstruation at the same time (again due to high BP) although I am sure the ring had nothing to do with it, it was more the risk of stroke etc. I changed to cerazette (progestin only pill) which does the same but creates a low estrogen state in the body which I am concerned about as estrogen has fluid retaining properties. 

If I were to add something back in I would only change one thing at once in order to determine the effect. 

1 hour ago, Pistol said:

attenuated plasma renin activity and aldosterone

I have tested low on both of these.

1 hour ago, Pistol said:

reduced supine blood volume coupled with dynamic orthostatic hypovolemia, elevated plasma norepinephrine and epinephrine

Clinically I identify with these too. I should find out my plasma catecholamine levels in a couple of weeks. 

B xxx

[bombsh3ll]

Really encouraged that florinef seems to be going the distance for those who have voted!

I just don't want to go through the same again thinking I've found a magic bullet then it dumps me, but on the other hand I really appreciate the quality of life licorice gave me for that year or so when my daughter was a toddler. She started walking just a couple of weeks before I lost the ability to, & the licorice gave me a bit of that back. 

B xxx

 

[Clb75]

I was on midodrine first, 10 mg TID, but my BP was still low 100/ 70’s . I then started florinef 0.1 twice daily. At one point I started birth control which made the diastolic come up another 10 points. Eventually my BP started to get too high, so I cut the midodrine, then eventually backed down the florinef to 0.1 once a day. I tried to split that in half but started passing out again so 0.1 seems to be my best dose for now. 

This is one of the few meds that I’ve never had any real side effects from, so I’ve been able to tolerate it well. I’ve read of others having headaches on it though, so I guess it really depends on the individual. 

[p8d]

HRT didn’t make any difference in dys symptoms.  My cardiologist told me to get off and my neurologist said they put people on BC pills to lower BP.  Probably a pre vs post menopause thing.

[bombsh3ll]

13 hours ago, Clb75 said:

I’ve read of others having headaches on it though

That happened to me, however I have never tried it without having licorice root in my system at the same time. I have also never tried it whilst not salt loading which I no longer do (although I still drink 2-3 litres of oral rehydration solution which has salt in), nor started with a really small dose. 

13 hours ago, p8d said:

my neurologist said they put people on BC pills to lower BP.

That's strange unless he meant the diuretic types like Yaz, & even that would not be used for the purpose of BP reduction. Usually estrogen containing BC has hypertension as a potential side effect. I'm primarily looking for the volume enhancement rather than BP numbers per se because my BP is normal. I have heard of many patients reporting improved orthostatic tolerance on it but also a few whom it made worse. I was on it when I got POTS so would definitely not want to have a natural menstrual cycle with POTS!

B xxx

[bombsh3ll]

Bumping - not got many results... any other florinef takers?