1. Experts Reflect on the FDA Stakeholder Meeting

    Joel asks a variety of leading doctors, researchers and advocates for their reflections on the FDA Drug Development Workshop
    Discuss the article on the Forum thread

how much potassium and salt to take with florinef

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by anniekim, Jul 9, 2012.

  1. anniekim Senior Member

    Messages:
    497
    Likes:
    73
    U.K
    I believe i suffer from POTS and have asked my doctor whether he would consider prescribing me florinef as a trial. I've read it is crucial to take salt and potassium if taking florinef but i don't know at what doses? Any suggestions most gratefully received :)
    anniekim, Jul 9, 2012
    #1
    stefny likes this.

  2. stefny

    Messages:
    44
    Likes:
    3
    Princeton, NJ
    I have the same question. I've heard varied: one 100 mg. capsule every 2 weeks from a mainstream POTs doc., 99 mg.'s a day, and Hulda Clark used to recommend a sodium/potassium salt combination for everyone. I'm also wondering about coconut water for electrolyte balance.
    stefny, Jul 9, 2012
    #2

  3. Ema Senior Moderator

    Messages:
    1,225
    Likes:
    549
    Midwest USA
    It really depends on what your individual labs and also on your level of activity (electrolytes lost through sweating for example).

    The targets I personally aim for on my labs are a fasting 8AM sodium level of 142-144 and a potassium level of 4.2-4.5. For me, this takes approx 3 teaspoons of sea salt a day and 80 mEQ of potassium. I've been stable on this approximate dose for over a year while taking 0.1-0.2 mg of Florinef.

    Some people take as little as a teaspoon of sea salt or as much as several tablespoons. Potassium use varies widely as well.

    But it is important to get regular electrolyte labs in my opinion because everyone will waste a different amount of potassium while on Florinef. Too much or too little potassium can be very dangerous so it is important to get regular labs until you know what effect it will have on you personally.
    Ema, Jul 9, 2012
    #3 Last edited by Ema, Jul 9, 2012

  4. anniekim Senior Member

    Messages:
    497
    Likes:
    73
    U.K
    Thanks Ema for your detailed and helpful reply
    anniekim, Jul 9, 2012
    #4

  5. anniekim Senior Member

    Messages:
    497
    Likes:
    73
    U.K
    Ema, my doc is willing to trial florinef for me (he just e mailed me). I haven't had any electrolyte testing for four years. At that time they were all within range. Is it ok to take florinef when potassium and sodium etc.. are within range?

    Many thanks
    anniekim, Jul 9, 2012
    #5

  6. Ema Senior Moderator

    Messages:
    1,225
    Likes:
    549
    Midwest USA
    Electrolyte testing from four years ago isn't going to have any relevance to your levels today unfortunately.

    Further, the ranges are really quite wide. So you could be technically "in-range" at 3.6 or so for potassium, start taking Florinef (which wastes potassium) and end up with low potassium symptoms pretty quickly. If it were me, I would ask for a standing lab order to test at least every two to three weeks while titrating up on Florinef. Besides the peace of mind from knowing your electrolyte levels are OK, this will help you determine the minimum effective dose of Florinef that helps to relieve your symptoms without producing side effects like fluid retention or high blood pressure and headaches. The labs will also help guide your salt and potassium supplementation. I get my labs done without any salt or potassium supplementation from about midnight on to 8AM so that I am always comparing apples to apples.

    I would also ask your doctor for a script for slow release potassium (I think it is called Slow K in the UK) and have that on hand before you start the Florinef.

    I also think that Florinef is best started very slowly and worked up gradually. My doctor suggested starting with 1/4 of a 0.1 mg tablet and holding that dose for two weeks. Then I did labs, adjusted electrolyte supplementation, and raised another 1/4 tablet. This way I avoided the side effects that can go along with rapid fluid balance changes. I repeated this process for several months until I got to a stable dose of Florinef that relieved my symptoms and kept my electrolyte levels stable.

    Florinef is a very powerful steroid and it has changed my life for the better no question but it is worth taking the time to monitor and go slowly. The effects are additive due to the long lasting nature of the drug so how you feel on one dose on day one is not the same as how you will feel on that same dose two weeks later.

    If you aren't keeping track of your BP at home, I would consider buying a monitor and tracking it. The rise in diastolic pressure is another good way to monitor your treatment and keep the dose from getting too high.
    Ema, Jul 9, 2012
    #6

  7. anniekim Senior Member

    Messages:
    497
    Likes:
    73
    U.K
    Thanks Ema, really helpful info. I think my doc is going to start me on o.o5 mg (50mcg) increasing to 100mcg. He hasn't said he will go higher. I am though going to follow your advice and start at a quarter of a tablet, 25mcg. Would much prefer to go low and slow
    anniekim, Jul 9, 2012
    #7

  8. anniekim Senior Member

    Messages:
    497
    Likes:
    73
    U.K
    Ema, has florinef caused you any weight gain? Thanks
    anniekim, Jul 10, 2012
    #8

  9. Ema Senior Moderator

    Messages:
    1,225
    Likes:
    549
    Midwest USA
    No, I didn't gain any weight on Florinef.
    Ema, Jul 10, 2012
    #9

  10. anniekim Senior Member

    Messages:
    497
    Likes:
    73
    U.K
    Thanks Ema
    anniekim, Jul 10, 2012
    #10

  11. taniaaust1 Senior Member

    Messages:
    5,087
    Likes:
    1,455
    Sth Australia
    Wow. I had no idea some were having to take that much salt with the Florinef ***wonders how you make yourself take that much per day**
    ....................

    I find I need at least 3mg (just over half a tsp of salt) per day or otherwise I dont get any effect from the Florinef. I often struggle to just make myself have that ..and the salt pills I arent high in this at all.

    anniekin. It is probably a good move to start with only a quarter of a pill per day of Florinef (my specailist has his patients always start off with only that for the first couple of weeks before increasing to a half of a pill).

    My doctor hasnt told me to take potassium with it but is rather just keeping an eye on that via blood test and I guess will put me on potassium if the tests show im needing to increase that.

    Im only on a half of pill of Florinef for past 3-4mths.. and havent noticed any weight gain with it. (hoping to increase my dose more soon).
    taniaaust1, Jul 11, 2012
    #11 Last edited by taniaaust1, Jul 11, 2012

  12. Ema Senior Moderator

    Messages:
    1,225
    Likes:
    549
    Midwest USA
    I have always loved the taste of salt...I mix a little bit of Celtic sea salt into all the bottles of water I drink and sip on it all day long. I actually don't like the taste of plain water anymore! Especially in this heat...

    I know some people get the empty capsules though and swallow the sea salt that way.
    Ema, Jul 12, 2012
    #12
    taniaaust1 likes this.

  13. charlie1

    Messages:
    34
    Likes:
    11
    Canada
    Anniekin- my endocrinologist prescribed .5 mg florinef for me in September for my very low blood pressure. The pressure did not rise to an acceptable level until my dosage increased (slowly) to .2 mg. but I was never prescribed potassium with it. Symptomatically I saw some improvement but not very much.

    Two months later blood work was done while I was hospitalized with my illness and showed that I was low on potassium and I was given supplements twice.

    In December I decreased my florinef to .5 mg. (blood pressure showing borderline hypertension plus my headaches had been increasing) Also, I slowly decreased my salt tablets from five 1 gr tablets/day down to one tablet/day (caused me nausea and stomach pain). I still salt all food.

    I now have a standing lab order for potassium blood work every 2 wks. Todays lab work shows potassium is fine so like Ema said, everybody's requirements are different. By the way, I did not gain weight on florinef.

    So although I'm taking less salt and florinef, my chronic low blood pressure which always seemed to be the culprit for my problems is for now remedied. Unfortunately, my pulse seems to be the issue. It's always been low but is now found to rise >30 bpm when standing. This still has me at only 90-100 bpm tops but is causing my POTS-like and PEM symptoms to become more intense.
    charlie1, Jan 4, 2013
    #13

Share This Page