Correct way to take Florinef/fludrocortisone for POTS

lauluce

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Hi! I'm sorry to bother you with something so trivial, but I really don't have the strenght and time right now to research this myself. I've POTS alongside ME as proven by a positive tilt table test and a 48hs CPET and I've been prescribed fludrocortisone after requesting it to my doctor, who knew nothing about POTS and wasn't even her speciality but was so kind as to do some research and prescribe me this drug, along with some tests to assure it doesn't harm me. I've been prescribed 0.10 mg per day, but I recall reading that for POTS it's necessary to increase salt and water intake. I as wondering if somebody could provide me some information about the right way to take fludrocortisone for people with POTS regarding the dose and this thing about salt/water. Thank you very much! I'll keep you updated on my progress
 

*GG*

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I am on the med, no diagnosis of POTS though. You are supposed to take it with lots of water, my Dr also "prescribes" me Elyte, that has some salt in it.

GG
 

Ema

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Hi! I'm sorry to bother you with something so trivial, but I really don't have the strenght and time right now to research this myself. I've POTS alongside ME as proven by a positive tilt table test and a 48hs CPET and I've been prescribed fludrocortisone after requesting it to my doctor, who knew nothing about POTS and wasn't even her speciality but was so kind as to do some research and prescribe me this drug, along with some tests to assure it doesn't harm me. I've been prescribed 0.10 mg per day, but I recall reading that for POTS it's necessary to increase salt and water intake. I as wondering if somebody could provide me some information about the right way to take fludrocortisone for people with POTS regarding the dose and this thing about salt/water. Thank you very much! I'll keep you updated on my progress
The most typical dose of fludro is 0.1-0.2 mg per day. It has a long half life so it can be taken all at once.

It does typically help to increase salt, potassium and water. Fludro can cause low potassium so it is important to do labs regularly and if it gets too low, talk about adding slow release potassium with your doctor.
 

lauluce

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I am on the med, no diagnosis of POTS though. You are supposed to take it with lots of water, my Dr also "prescribes" me Elyte, that has some salt in it.

GG
thanks for the reply! wich results did you get taking the med? What's your diagnosis?
 

lauluce

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The most typical dose of fludro is 0.1-0.2 mg per day. It has a long half life so it can be taken all at once.

It does typically help to increase salt, potassium and water. Fludro can cause low potassium so it is important to do labs regularly and if it gets too low, talk about adding slow release potassium with your doctor.
Thanks for the reply, I started to take 3 tea spoons of salt per day, but I'm still interested in seeing responses to my original question.
 
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I take it morning and night. I also drink crazy amounts of water and eat a lot of salt. I wasn't sure it was doing a lot so I stopped taking it for a period in december and the effect on my water retention was profound. I was suddenly drinking even more and peeing more than I thought a human could. I'm not sure if it affects POTS too much but for me having to drink so much so often is very annoying.
 
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I used to take one in the morning half pill at noon. I did great on it. But gained too
Much weight so I quit. You ahve to quit slowly. I took others OI meds like
Midodrine so
I did not increase salt too much since the pill
Raised my BP where it needed to go. Cucunut water was the best for tummy ( salt and everything else was rough on tummy). I think is great tool
For CFS and also POTs. My humble opinion.
 

JeanneD

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I've been on fludro for POTS for many years. It has been very effective for me. The POTS protocol I was given (and usually follow ;)) is this:

Keep a bottle of electrolyte water by the bedside. As soon as you wake up, take the fludro and start drinking as much water at you can. Try to stay in bed for about 30 minutes drinking as much electrolyte water as you can. This allows your body to rehydrate after not drinking all night (most of us can't go 8-10 hrs without drinking without getting dehydrated). That also gives the fludro time to get into your system and working.

Getting upright after hours of being horizontal and dehydrated can trigger various dysautonomia isses which will affect you all day, even if you don't have an immediate POTS rxn. Better to take the time to start out right, according to my doc.

Drink 3 liters of electrolyte water daily, preferably cold and in decent amounts instead of sipping only.

Increasing salts is important, but table salt alone is not good. Some kind of balanced electrolyte drink is better for your body because it has a mix of salts and the minerals that you tend to wash out when you drink a lot of water. As @Ema said, fludro depletes potassium, so you need an electrolyte mix with plenty of potassium and possibly a supplement if your lab shows low potassium. Get regular sodium and potassium labs because it's easy to get one or both out of kilter when you take fludro and/or drink a lot of water.

Or so my doc said and it's worked well for me for many years.
 

lauluce

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I thought you asked about the dose and whether or not to take extra salt and water with it?

Apologies if I misunderstood your original question.
yes, that what I ask
I've been on fludro for POTS for many years. It has been very effective for me. The POTS protocol I was given (and usually follow ;)) is this:

Keep a bottle of electrolyte water by the bedside. As soon as you wake up, take the fludro and start drinking as much water at you can. Try to stay in bed for about 30 minutes drinking as much electrolyte water as you can. This allows your body to rehydrate after not drinking all night (most of us can't go 8-10 hrs without drinking without getting dehydrated). That also gives the fludro time to get into your system and working.

Getting upright after hours of being horizontal and dehydrated can trigger various dysautonomia isses which will affect you all day, even if you don't have an immediate POTS rxn. Better to take the time to start out right, according to my doc.

Drink 3 liters of electrolyte water daily, preferably cold and in decent amounts instead of sipping only.

Increasing salts is important, but table salt alone is not good. Some kind of balanced electrolyte drink is better for your body because it has a mix of salts and the minerals that you tend to wash out when you drink a lot of water. As @Ema said, fludro depletes potassium, so you need an electrolyte mix with plenty of potassium and possibly a supplement if your lab shows low potassium. Get regular sodium and potassium labs because it's easy to get one or both out of kilter when you take fludro and/or drink a lot of water.

Or so my doc said and it's worked well for me for many years.
Thank you for your reply! What kind of electrolyte water do you drink? do you prepare it yourself? thanks! b the way this is my third day on 0.1mg fludrocortisone, and 2nd day taking three teaspoons of salt over the course of the day. Still no improvement, but no side effects either. I noticed yesterday that mi palms where quite red, anybody experienced this while on fludrocortisone?
 

Ema

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The hypovolemic patient will do well with expanding plasma volume with generous salt intake and fludrocorti- sone. The salt intake should be between 150–250 mEq of sodium (10–20 g of salt)...The patient should have at least 1 glass or cup of fluids with their meals and at least 2 at other times each day to obtain 2–2.5 L/day. Fludrocortisone, with doses up to 0.4 mg in young subjects, can be used initially, with the dose adjusted downwards to a maintenance dose of 0.1 to 0.2 mg/day.
From this article on POTS:http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/epdf
 

JeanneD

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yes, that what I ask

Thank you for your reply! What kind of electrolyte water do you drink? do you prepare it yourself? thanks! b the way this is my third day on 0.1mg fludrocortisone, and 2nd day taking three teaspoons of salt over the course of the day. Still no improvement, but no side effects either. I noticed yesterday that mi palms where quite red, anybody experienced this while on fludrocortisone?
There are a number of electrolyte powders and drinks out there. This is what was recommended to me as a proper balance ElectroMix. I see now that it has no sodium and remember that I was told that large amounts of sodium are not necessary when taking fludro, but that being generous in everyday salt intake is wise. If you still have symptoms, you need more fludro, not more salt.

I don't know how much 10-20 g of table salt is, or whether that's consistent with what I was told, but I'd go with the POTS article Ema posted. I'd consider that the greater authority.
 

bombsh3ll

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I've been chugging 3 litres of water and 2 teaspoons of salt plus half a teaspoon of potassium daily since I got POTS but it doesn't seem to help, I just pee it out. Licorice root helped me out a lot for several months but then stopped working so I am going to try Florinef again soon. I produce almost no renin or aldosterone though so I was thinking that for me, replacing the missing aldosterone with Florinef should in theory allow me to just eat and drink like a normal person?

I don't have Addison's disease as my baseline and stimulated cortisol levels are normal.

Still no improvement, but no side effects either
Are you finding any benefit yet lauluce?

Also for those it helps, does it stop working after a while or are the benefits maintained?
 

lauluce

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I've been chugging 3 litres of water and 2 teaspoons of salt plus half a teaspoon of potassium daily since I got POTS but it doesn't seem to help, I just pee it out. Licorice root helped me out a lot for several months but then stopped working so I am going to try Florinef again soon. I produce almost no renin or aldosterone though so I was thinking that for me, replacing the missing aldosterone with Florinef should in theory allow me to just eat and drink like a normal person?

I don't have Addison's disease as my baseline and stimulated cortisol levels are normal.



Are you finding any benefit yet lauluce?

Also for those it helps, does it stop working after a while or are the benefits maintained?
still no effects, however I'll son take a blood test for electrolytes, and my blood pressure is fine, so if the test come back normal or at least in acceptable values, I will increase the dose to the maximum of 0.2mg fludrocortisone. What noticed is that I'm urinating less than the last time I tried drinking more water, an also the time when I took salt alone... maybe the water and salt I'm taking is now being used to increase my blood volume instead of being wasted by the urine?
 

lauluce

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UPDATE: it seems to be... WORKING??? the more water and salt that I take with this thing, the better I seem to feel, yesterday I took a bath without getting extremely tired for the first time in a long time... I seem to have less nausea and lightheadness and my arms seem stronger... I don't want to rush this, maybe is just wishful thinking, I don't know. By the way, the salt I'm taking is branded as "marine salt", it was at my home by mere chance, but I think it's being better than regular salt
 

bombsh3ll

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Wow that's great news, I'm so pleased for you!

So you are taking 0.1mg daily and it has taken about a week to see an effect?

Are you supplementing with potassium automatically or waiting to see if your levels drop?

I already supplement potassium as I take licorice root, so I will definitely continue to do so when I switch, and get regular blood tests.
 

lauluce

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Wow that's great news, I'm so pleased for you!

So you are taking 0.1mg daily and it has taken about a week to see an effect?

Are you supplementing with potassium automatically or waiting to see if your levels drop?

I already supplement potassium as I take licorice root, so I will definitely continue to do so when I switch, and get regular blood tests.
well, the salt I'm taking happens to contain potassium along with sodium so I guess potassium was covered from the begining. Tomorrow, if I manage to wake up early and get to the lab without eating, I'll get some lab test including electrolyte levels, we'll see how I'm doing with that...