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How much salt and water with Florinef?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Ninan, Jan 23, 2014.

  1. Ninan

    Ninan Senior Member

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    Yes, I drink 1-2 liters of ElectroMix, 2 liters of water and eat 5 g extra salt.

    I took another 0,05 Florinef and felt better.

    Did the loss of effect come even at higher doses? I'm afraid it will disappear totally.
  2. SOC

    SOC Moderator and Senior Member

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    No, I stabilized at .20 in the morning and .05 at noon. The noon dose helps me feel better later in the day.
    Last edited: Feb 2, 2014
    Ninan likes this.
  3. Ninan

    Ninan Senior Member

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    That's good to hear! I don't want to lose this fantastic effect. So I increase the dose and see what happens.

    Thanks for sharing, @SOC ! Again! :thumbsup:
    SOC likes this.
  4. Ninan

    Ninan Senior Member

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    On 0,15 now and losing effect. Wonder if pulsing it would help. Going to 0,2 with fear.
  5. Tristen

    Tristen Senior Member

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    Keep a close watch on your blood pressure too.
  6. Ninan

    Ninan Senior Member

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    Well, I don't but I've always had very low BP. With 0,1 Florinef, Orstanorm, lots of water and salt and support stockings it was normal. Will check it again in a few weeks.
  7. Tristen

    Tristen Senior Member

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    That's good....you know where it's at.

    We're all different and maybe my BP was more brittle years back when I tried Florinef (and all the other fluid volume drugs) because my BP ran really low too, yet low dose Florinef with the slightest amount too much fluids and electrolytes would make it spike too high.

    Hope the drug and your regimen continues to work well for you.
    Ninan likes this.
  8. Ninan

    Ninan Senior Member

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    Ok, that's good to know.

    I hope so too but it sure doesn't look good. I hate it when you finally find something and it stops working so soon.
  9. Ninan

    Ninan Senior Member

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    @Tristen did you have any effect from Florinef? Did it last? And what other drugs did you try?
  10. Tristen

    Tristen Senior Member

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    Florinef, like many things I've tried over the years gave a very temporary relief, and then stopped working. Same was true of Midodrine. What works and what I'm able to tolerate has changed over the years as my condition changes. So even though my experience is most common still, what worked and didn't work for me may have little to do with what may work for you.

    Out of all these treatment ideas that continue to come up in our community, once in a while one of them will work long term for one us. Hopefully Florinef is the ticket for you.
  11. Ninan

    Ninan Senior Member

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    Probably not. The effect is wearing off, even at 0,25. Meaning I will need IV saline again to even be able to think and surf the net. And for that I need to live with my parents and my veins already look like shit since they won't give me a CVC or pic-line.

    I just ordered licorice root since I heard it might help. Read about the bioidentical aldosterone and about Demopressin.

    I think it's good that we share good and bad experiences here. I for one need to hear people say "No, I tried and it didn't work" or "Yes, but just for days/weeks/years." It helps me keep my hopes on a realistic level and makes it easier to plan. So, thanks for sharing, @Tristen !
  12. Ema

    Ema Senior Member

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    I think you are increasing too fast and changing your dose without giving it enough time to stabilize. It took me 6 months to get up to .2 mg of Florinef by increasing 1/4 tablet at a time. Granted, I think I could have done it faster now but I think you are increasing too much variability by changing your dose every few days.

    Florinef is a VERY long lasting steroid. It can take 2-3 weeks to feel the full effects of a dose increase.

    During that time, it's crucial to keep track of your electrolytes through regular labs (I got mine done every week at first, then every 2-3, and then monthly). Everyone will have different requirements for water, salt and potassium and it is impossible to predict what yours will be without labs.

    I also think you are not getting enough fluid or enough salt. But again, it's labs and BP that dictate this. I will tell you that for ME, when I was on .2 Florinef, I needed 3-4 teaspoons of sea salt (one teaspoon in each liter of water I drank throughout the day) and 80 mEQ of slow release potassium. That's a LOT of potassium that can only be safely taken when monitoring regularly. But for me, Florinef was a HUGE potassium waster. A banana a day would have come nowhere near to my potassium requirements.

    A BP monitor is also a crucial investment because you can see your diastolic BP come up with Florinef. For me, once I got into the 70s, things started to improve. Your systolic BP will generally also improve (whatever direction apparently it needs to go :)

    It took a while, but my dizziness did go away on .2 Florinef with the appropriate water/salt/potassium combo. If it were me, I would work at this in a much more systematic way before trying bio aldosterone or even adding licorice (which I eventually did and thought worked well). But licorice at this point would just be one more confounding variable and has other effects (primarily estrogenic) that may or may not be desirable.

    If you have low cortisol (have you checked your adrenal status?), that may also be complicating the picture. Low cortisol causes me extreme dizziness and Florinef won't help with that at all.

    Just my .02.
    SOC and ahimsa like this.
  13. Ninan

    Ninan Senior Member

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    Thanks for sharing @Ema !

    Thing is I notice effect within 5 hours after changing the dose. And that effect is totally gone in about 11 days. So if I should go up more slowly I would go without effect almost all the time. I don't see how that would help.

    I have increased salt intake, i take about 2 teaspoons of sea salt. I will start taking 3-4 and see if it changes anything. I don't take much potassium so I guess I'll increase that too.

    My cortisol levels were good the last time I checked. And I'm not dizzy, more brain fogged and I have more immune response without Florinef. Leaves me bed bound.
  14. Ema

    Ema Senior Member

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    So what would happen if you raised the dose, held for 11 days until the effect is gone, and then raised again (along with raising your salt and potassium based on new labs)?

    And then held that dose for another 11 days until the effect was gone and then got new labs and raised again?

    Shouldn't that keep the effects increasing as it builds up to a therapeutic dose?

    Careful with the potassium until you can get a standing order for labs. Too much is VERY bad.
  15. Ema

    Ema Senior Member

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    Blood sugar fluctuations can be caused by Florinef as well and may exacerbate existing blood sugar issues that are so common in our population. This can cause a worsening of brain fog for sure.

    http://undergroundwellness.com/podcast-227-how-to-clear-up-brain-fog/

    I would also look at other causes of brain inflammation including gluten sensitivity and Hashi's, if you haven't already ruled those out.
  16. Ninan

    Ninan Senior Member

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    That's what I've been doing. Got no labs though. I raise it with 0,05 every time it stops working. And it doesn't seem to help since I'm now on 0,25 and losing effect again.
  17. Ninan

    Ninan Senior Member

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    My blood sugar is stable since I'm on paleo. And it's nothing else, I know the feeling when my brain doesn't get enough blood. That's what happens. I've heard of others only having temporary relief from Florinef and I guess I'm one of them. NOT happy about that. :cry:
  18. Ninan

    Ninan Senior Member

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    But I'm trying licorice root and maybe some other stuff. I know now that OI is 50 % of my ME/CFS and I don't want to give it up.
  19. Ema

    Ema Senior Member

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    But it sounds like you're not giving it enough time to fully build up to a therapeutic dose, and not getting enough fluid/salt/potassium.

    It takes longer than a month in my experience.

    And POTS doses are vastly larger than doses for adrenal insufficiency. I've seen reports of people taking up to a full mg! Not that I would suggest that except under the care of a specialist.

    I just think it's way too early to throw in the towel on Florinef. It may not work, but I can't see how you would know that now.

    Not trying to be controversial either :), but do you KNOW your blood sugar is stable? Do you have a meter and test it AM fasting and 15, 30, 45, and 60 minutes after each meal? Obviously not every day but enough to prove to yourself that it is in fact stable and not just because Paleo says it should be stable on that diet?

    Have you had thyroid antibodies and gluten antibodies tested? Do you know for sure that your cortisol is optimal with serum and saliva testing?

    Are you testing your BP regularly? Oxygen sats with a home meter?

    Maybe you've done all this and satisfied yourself, which is all that counts! :)
    ahimsa likes this.
  20. Ninan

    Ninan Senior Member

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    :)

    No, I haven't checked all those things. I'm home- or bed bound and that makes it difficult. But I know my blood sugar levels are ok from my mood. I usually have terrible mood swings when I don't eat regularly, because of blood sugar issues. And I don't have that now. I noticed a change when I started Florinef but it's stable enough. So no, I don't know for sure but I'm totally convinced, myself.

    So I should go on taking Florinef even if the effect disappears totally and maybe it will start working again? Sounds like that's not going to happen, but of course I can try.

    A mg! :) I could go higher than 0,25 but then it seems I would keep losing effect just the same. And I'm afraid that the higher I go the worse I will feel when I have to stop it.

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