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Big Florinef Doses Needed Anyone?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by xks201, Jan 16, 2013.

  1. xks201

    xks201 Senior Member

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    I take like .4mg and it gives me energy. That is 4 pills. If I take one or two I notice nothing. I take them sublingually. Just curious if anyone else requires big florinef doses to notice an anti fatigue effect?
     
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  2. Ema

    Ema Senior Member

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    I take 0.2 mg (2 pills) of Florinef sublingually. One and a half in the AM and the other half at bedtime.

    I was concerned with this dose at first but it is the one that works for me and keeps my fluid volume up enough to keep the OI in check and my BP in the good range. I think that the typical dosing comes from Addison's patients who typically don't need as much. But they also typically do not have a brain dysfunction and/or steroid resistance to deal with as well.

    I did read something from the Vanderbilt POTS clinic that said that they used doses up to a full mg (10 tablets) with their patients so I think that the appropriate dose can vary widely depending on the person.

    Hopefully you are keeping an eye on your electrolytes especially potassium since Florinef is a potassium wasting drug.

    Ema
     
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  3. xks201

    xks201 Senior Member

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    Interesting, thank you.
     
  4. lnester7

    lnester7 Seven

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    Instead of doing a whole pill, I do better splitting the pill and overall I do less mg. I am on 1 and a half pill (3 halves 3 times a day). I think the going higher depends on the BP/. In my case Dr didn't want me to go higher because my low bp number was too high.
     
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  5. taniaaust1

    taniaaust1

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    Isnt that risky using it like that for that?

    My specialist wont allow me to have more then one pill per day of it .. as he says the body adapts to it after a while and hence it can stop working. (in which cause you would be left in an even worst state due to the body getting used to having it).

    Ive heard from several people who were on it in which it did in fact stop working due to body adaption after a while, just like my specialist has told me it can (seems they were okay thou on it for up to 18mths before it stopped working). I do thou wish I could be trialing more of it (I'd like to trail 1.5 pills) as it certainly is currently helping me.
     
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  6. ahimsa

    ahimsa Senior Member

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    That's pretty much what happened to me with the Florinef. After a few years my improvement leveled off and started to go downhill. Then I added midodrine (I take both drugs now) and that helped me a lot.

    Midodrine is not recommended for folks who have big swings in BP since it might make the blood pressure go too high. But since my blood pressure has always been so low all the time (it's rare if my systolic even gets close to 120, let alone above it, and that's with all the meds and salt that I take) then that's not a problem for me. My heart rate may be all over the place but my BP tends to range anywhere from low to unmeasurable.

    The only precaution my doctor has ever told me is not take midodrine too close to sleeping. I'm also not supposed to take it if I'm going to be lying down. But since one dose only lasts 3-4 hours then it's flexible. The down side is that it needs to be taken 3-4 times a day. But the good side is that on days when I get a migraine, or some virus, or any other problem which might put me in bed for a while, then I just don't take it.

    I only take midodrine when I'm feeling well enough to be upright--either partly, as in the recliner with my feet up, or fully, as when I'm out doing errands.

    This is kind of rambling message... I'm not sure whether it applies to anyone on this thread, but I thought I'd chime in with my own experience after reading taniaaust1's message. Anyway, I hope it's helpful for someone out there!
     
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  7. jimells

    jimells Senior Member

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    From what I have read, 0.4 mg sounds like a big dose. I've been taking 0.05 mg Florinef and about 6 mg (1/4 tablet) Atenolol for almost a year and it works great for my POTS. It does nothing for fatigue, etc.

    I tried 0.1 mg Florinef and it caused daily migraines - but then almost anything might trigger a migraine for me, except all the foods that are supposed to cause migraines!
     
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  8. Tulip52

    Tulip52

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    Hello

    How do u take this florinef? I have Addisons and take extra hydrocortisone because i can not take florinef. My doc said it will not work unless you drink it with sodium water. I tried but the sea salt i add to my water make me sick in stomach by increasing my osmolarity, then I get nausea and diarrhea. :(. Also, if I do not get a certain amount of mineralcorticoid or some sodium ...I just can not drink anything or i will urinated every 20-30 minutes..so then i get dehydrated from this.

    Also, all labs are normal when taking these says my Endo, but also why do I get hot flashes after taking either steroid. Is it affecting my estrogen by raising the cortisol binding globulin. That us what all the studies say... I am post menopause but this get hot flashes, however, I do take estrogen/testosterone.

    The steroid and the estrogen are playing a tug of war ...going back and forth affecting each other. Anyone else balancing their hormones with adrenal insufficiency since this disease afters several other hormones including Dhea, Androstendionone and progesterone etc I know we need both mineralcorticoids and glucocorticoids but how do we balance the ratio.

    Linda
     
  9. voner

    voner Senior Member

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    this certainly is an area of a lot of variation in each person.....

    I am at 0.3mg... I may be noticing an effect in heart rate and other symptoms, bi put it will be a few weeks to tell for sure, as I just started... 0.1...no effect, 0.2 small change in cold feet, etc. my doc Says that he will prescribe up to 0.4 mg.

    He says that 0.4mg is at the level where you have to start considering long-term steroid issues of this Drug. he says he sees a looks for edema in the extremeties as a visual flag.
     
  10. Ema

    Ema Senior Member

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    Tulip52

    Have you ever been evaluated for diabetes insipidus? It has nothing to do with sugar and everything to do with water and electrolyte balance.

    I think it might be concerning long term to take extra hydrocortisone to try to make up for a lack of Florinef. Have you tried bioidentical aldosterone from a compounding pharmacy? Or even licorice?

    What are you sex hormone levels most recently? What form of BHRT are you using for estrogen and testosterone replacement?

    I think this thread belongs more on your own thread that we started a few days ago so as not to derail this one. If you are amenable, I will move it and we can continue.

    I was diagnosed with secondary adrenal insufficiency and took HC and Florinef for almost three years though it seems to be resolving itself now that I'm getting infections under control. I have a lot of personal experience with hormone balancing, particularly cortisol, unfortunately.

    Ema
     
  11. xchocoholic

    xchocoholic Senior Member

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    All good google searches lead back to PR. Lol.

    I'm noticing an increase in energy from Florinef. It looks like some others here are too.

    I'm at .025 mg now. I just started taking this on Dec 1st.

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