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how much potassium and salt to take with florinef

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

  1. anniekim

    anniekim Senior Member

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    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 :)
     
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  2. stefny

    stefny

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    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.
     
  3. Ema

    Ema Senior Member

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    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.
     
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  4. anniekim

    anniekim Senior Member

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    Thanks Ema for your detailed and helpful reply
     
  5. anniekim

    anniekim Senior Member

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    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
     
  6. Ema

    Ema Senior Member

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    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.
     
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  7. anniekim

    anniekim Senior Member

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    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
     
  8. anniekim

    anniekim Senior Member

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    Ema, has florinef caused you any weight gain? Thanks
     
  9. Ema

    Ema Senior Member

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    No, I didn't gain any weight on Florinef.
     
  10. anniekim

    anniekim Senior Member

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    Thanks Ema
     
  11. taniaaust1

    taniaaust1

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    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).
     
  12. Ema

    Ema Senior Member

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    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.
     
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  13. charlie1

    charlie1

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    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.
     
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  14. xchocoholic

    xchocoholic Senior Member

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    Hmmmmmm. I appear to be the last pwc taking florinef.

    Great info. I'll look for slow release potassium. Eating citrus and bananas is causing too many blood glucose reactions.

    Tx ... x

    Correction. I appear to be the last pwc to start taking florinef.
     
    Last edited: Dec 11, 2014
  15. ahimsa

    ahimsa Senior Member

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    Hi,

    I think there are quite a few other folks on the forum who are still taking florinef (fludrocortisone) -- but maybe they have just not seen your posts about it? Anyway, since I happened to see post, this I'll be happy to respond.

    I don't have any detailed observations of my blood pressure, etc. (I saw a list in your other thread). But I can tell you what is working for me just in case any of it is helpful.

    However we're probably different in a lot of ways. For example, I don't have any blood glucose problems after eating fruit. And I think you've posted other symptoms or reactions (gluten intolerance and/or celiac? I have trouble keeping folks on this forum straight, sorry!) that are quite different from mine. So, please take this with a huge grain of salt, as the saying goes! ;)

    I'm currently taking a combination of midodrine (5 mg, 3 or 4 times a day), fludrocortisone (1/2 tablet = 0.05 mg, once a day), time released prescription potassium (Klor-Con or generic equivalent, 10 Meq = about 750? mg, once a day) and salt tablets (4-5 Thermotabs or equivalent per day). I also drink about 3 liters of water daily.

    Sometimes (I'm not very regular) I substitute one of the liters of water with a liter of homemade electrolyte solution. I mix up salt, potassium chloride, and water, plus a tablespoon of dextrose (if I'm going to be skipping dinner that night) about once or twice a week. I try to save this up for times when I need some extra energy. That electrolyte solution, plus not eating dinner, is usually helpful for my sleep. Note -- no sleep apnea or GERD, so that is not why not eating dinner helps my sleep. It has something to do with the Orthostatic Intolerance/NMH that I have.

    I found that adjusting my drug and supplement dosages based on my symptoms (how I feel) works much better than trying to measure my blood pressure and heart rate in detail. Part of this is because just by stopping to measure my BP it will be different than it is while I am actually doing something. So it's not a very accurate measurement.

    Also, when I was on the tilt table test I started having symptoms after only about 5 minutes (nausea, dizziness, muscle twitching, etc.). But my huge drop in blood pressure did not happen until after 20 or 30 minutes. So I think, at least for some people, there may be a delay between when the symptoms start and when there's a measurable drop in the blood pressure.

    The other thing is I try to give things time to work. My understanding is that it takes at least a few days before fludrocortisone starts working. Midodrine seems to kick in much faster but it still may take the body a few days to get used to it. Also, there are many, many other variables that contribute to how I feel (how I sleep, what I eat, time of the month, other sources of stress, etc......). So, it's hard to tell whether a new supplement or modified dosage has made me better or worse unless I try it for a week, or at least a few days in a row.

    I'm not an expert on this stuff and my combination is a whole lot of trial and error. And I still get crashes where I can't figure out what I did wrong other than just doing "too much" -- even when that same amount didn't seem to be "too much" a few weeks earlier. Oh well.

    I hope this is helpful! I think I rambled on a bit too long. But if you have specific questions I'd be happy to share more about what I'm taking and why.
     
    Last edited: Dec 10, 2014
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  16. Ema

    Ema Senior Member

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    No, me too!
     
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  17. xchocoholic

    xchocoholic Senior Member

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    Thanks for replying @ahimsa and @Ema .

    I actually meant to say that I appear to be the last pwc to start taking florinef. Doh !

    This high bp is making me feel weird. I only remember seeing mine in the 140 range when I was taking guafenasin daily 10 ish years ago.

    I'm exhausted now from running errands but will come back to re-read this. I'm curious about why you're taking midrodine and florinef. Florinef alone is bringing my bp up.

    Thanks again. X
     
  18. ahimsa

    ahimsa Senior Member

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    Not to worry, I've posted a fair number of typos myself! :)
    I am just a patient, not a doctor, but I'll try to share my two cents. Please pardon me if 1) something does not make sense, or I leave out an important detail or 2) it goes in the other direction and seems patronizing and explaining too many simple details. I'm not always good with this stuff.

    (I still feel bad about that time I posted something like, "Does that make sense?" and the person thought I was insulting their intelligence. So that's why I'm being extra clear here.)

    My problem with Orthostatic Intolerance is not a simple matter of low resting blood pressure (BP taken while sitting down). I've had low blood pressure all my life without any problems. It never interfered with going to college, working, standing, or exercising (everything from mountain climbing to weight lifting). I always had loads of energy.

    Actually, it's not like I took my blood pressure all the time. So I don't know for sure. But whenever I donated blood (used to donate pretty regularly), or went to the doctor's office, they took my BP. My BP was always on the low side. But I had no symptoms from it.

    My understanding of Neurally Mediated Hypotension is that the problem is the huge drop in blood pressure. People with NMH can have high blood pressure to start with. Then after an NMH trigger (standing, heat, etc) the BP drops. Also, in both NMH and POTS there can be low blood volume which causes symptoms. And there may be many other factors that I'm forgetting.

    So, back to the medications and how they affect my blood pressure. Even while taking both fludrocortisone and midodrine - plus salt tablets and extra water - I still don't have high blood pressure. I think the highest number that I have ever seen in my whole life was 135 systolic (don't remember the lower number).

    My resting BP is more likely to be between 100-110/65-70. When things get bad the systolic goes down to 80-90 and/or I get a very low pulse pressure (very small difference between systolic and diastolic pressure, the top number and the bottom number).

    I know some people have to watch out for the drugs making their BP go too high. But I don't have that problem at all.

    PS. I forgot to add that the midodrine and fludrocortisone together work much better for me than just fludrocortisone. I've been taking fludrocortsone for years, since 1995 after my first tilt table test. I had increased the dosage slowly but it finally seemed to be wearing off. Plus it caused weight gain somewhat.

    So in 2003 I went on midodrine and reduced the fludrocortisone dosage. That works better for me but I could not tell you all the gory details about why.
     
    Last edited: Dec 13, 2014 at 2:04 PM
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  19. xchocoholic

    xchocoholic Senior Member

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    Hi @ahimsa

    Thanks for replying. No need to worry about me taking something the wrong way. I try not to infer anything other than info from posts on a health forum.

    Good to hear you're seeing progress with these meds. There's always so much trial and error involved.

    I may try Midrodine later. First I want to see what Florinef will do for me. It's bringing my bp up like nothing I've ever tried before. I'm assuming that's a sign that I need it.

    I'm monitoring all this so I can learn to id the feelings without a monitor.

    I definitely have to salt load to keep my bp up so the way florinef works seems to explain why. My bp tanks around 70/50 without salt.

    Tx ... x
     
    Last edited: Dec 11, 2014
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