Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

HELP, ‪I'M AT RISK, STARTING TO TAKE FLUDROCORTISONE ON MY OWN

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by lauluce, Jul 30, 2015.

?

How risky is fludrocortisone/florinef?

  1. no risk

    0 vote(s)
    0.0%
  2. minimal risk

    3 vote(s)
    33.3%
  3. moderate risk

    3 vote(s)
    33.3%
  4. high risk

    2 vote(s)
    22.2%
  5. are you trying to commit suicide or what?

    1 vote(s)
    11.1%
  1. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    I have written this before but my computer crashed, the thing is that due to medical neglect I'm going to start consuming fludrocortisone (brand name florinef) to treat my ME/CFS related POTS (diagnosed unequivocally by a ppositivetilt table test), since no doctor knows or is willing to treat me. I got good results using pseudoefedrine on my own, which is a vasoconstrictor, so I spect that the most commonly prescribed drug for POTS which is also a vasoconstrictor, will help me even more. I can't stand this no more, I´m control of my treatment. I've already bought the fludrocortisone pills, and I´m completely determinate to take them, but I´m afraid of the risks. Is anybody familiarized with this drug or has any advice on how to minimize it risks? Thank you!!
     
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,335
    Likes:
    21,483
    Albuquerque
    My doctor had me start low and supplement potassium as it often depletes it. Florinef didn't help me at all--even as we raised the doses. But it does help a certain percent.
     
  3. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,173
    Are the negligent doctors willing to at least monitor your potassium levels? I've experimented on myself with many prescription meds without medical supervision but personally I would not self-prescribe anything that affects water and electrolyte balance such as fludrocortisone (or desmopressin) because getting it wrong could get you hospitalised or dead.
     
  4. Hip

    Hip Senior Member

    Messages:
    9,365
    Likes:
    14,717
    I know it's not the question you asked, but have you tried taking salt (sodium chloride) as a POTS treatment? Details of salt dosage for POTS are given on this page: POTS - What Helps

    Basically, anything from 3 to 15 grams of salt per day, in divided doses.
     
    lauluce likes this.
  5. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    That's quite sad to hear and it was exactly what I feared... I don't think any doctor whould check my potassium levels if I tell them that it's because l'm taking that med on my own, yet I could trick some doctor into prescribing the test... How to do it is the question, any ideas?
     
  6. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    I though about it but Im not sure how to do it, should I take the salt as is or try to get salt pills or tablets? If it is the later, since I should ask some pharmacy to prepare them, It'll maybe be difficult. I'm from Argentina by the way
     
  7. Hip

    Hip Senior Member

    Messages:
    9,365
    Likes:
    14,717
    Ordinary salt that you use for cooking is fine. That is what I used when I tried this salt protocol myself, to try to treat my own POTS.

    I used a dose of 2 grams of salt, mixed into a large glass of water (200 ml), and drunk down in one go. This I did three times a day. So that is a total of 6 grams of salt a day.

    It is best to mix the salt in a good amount of water, because if you use only a small glass of water, you can get some mild stomach irritation when you swallow the water, because it is too concentrated with salt. If you do feel some stomach irritation, just drink some more fresh water, and it will usually go away.

    This protocol is very easy to, and costs next to nothing.

    Note that one level teaspoon of salt weights around 4 or 5 grams. So for a dose of 2 grams, you want half a level teaspoon of salt.
     
    lauluce likes this.
  8. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    Thank yoju! Ill try iy
     
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,408
    Likes:
    24,308
    USA
    I tried Florinef for three months in 2014 (supplementing Potassium) but had no positive benefit. It gave me daily headaches but did not raise my BP or other autonomic issues. But others have done well with it so we are all different. I am still looking for the autonomic medication that will help me, too!
     
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,843
    WA, USA
    A metabolic panel or an electrolyte panel should not be that hard to get. Just say you want to check your electrolytes. It's not unreasonable, these are basic screening tests: they should order something like this without much argument. If you have any insurance at all, they should pay their part no hassle.

    If you need to give the doc something to write down, say your relevant symptoms (dizzy or lightheaded, head rush, rapid heart rate, palpitations, low blood pressure, high blood pressure spikes, whatever it is you have) and be sure to mention if you are having bowel problems because that could cause electrolyte imbalance.

    You will want to monitor your blood pressure while you use the salt. You can buy a blood pressure monitor online. Some people use sea salt, because it has various minerals, and some people mix in no-sodum salt substitute because it has potassium. I use an electrolyte mix that's designed to be the same mix of electrolytes as blood; I feel pretty safe with that and my doctor likes it (I'm fortunate to have doctors who will at least order blood tests and, finally now, basic medicines like florinef).
     
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    I'd suggest adding potassium too. I use a "Lo-Salt" salt substitute from the supermarket which is 66% potassium and 33% sodium.
     
    Sidereal likes this.
  12. bertiedog

    bertiedog Senior Member

    Messages:
    975
    Likes:
    1,308
    South East England, UK
    I take just half a tab of fludrocortisone when I am suffering with extreme sweating and getting bad symptoms and within an hour I start to feel a touch better ... but I have virtual adrenal insufficiency and also take 6mg Prednisolone daily so I am not your normal ME/CFS/Lyme patient. However I also did used to suffer with POTS so I know what that is like.

    To treat my symptoms I also needed a low dose betablocker, 20 mg Propananol once or twice daily to stop the overproduction of adrenaline and by doing this I have virtually eliminated the POTS, its only an occasional problem first thing in the morning if I try to do too much before my steroid has kicked in.

    With herbal treatment for the late stage Lyme I can now do an average of 8500 steps daily but if I wasn't in the fortunate position of having some treatment I would be lying on the couch all day unable to even sit up. I remember it very well.

    I do wonder if extreme POTS is also a sign of probably quite severe weakness of the adrenals which is rarely treated unless it gets to Addisons levels. The way the traditional doctors see the adrenals is that they either work normally, or if there is too much production of cortisol it is called Cushings disease and if it is the opposite it is Addisons. They don't seem to get that we can have adrenals that can still produce some cortisol, enough to keep us alive but not sufficient for us to be able to handle normal day to day stress like getting up, eating and trying to do physical stuff.

    I take it that you have researched POTS well so you know about the combo of meds that is suggested, ie a low dose betablocker and Fludro or Midodrine? BTW Taking extra salt doesn't work for me if it is hot for longer than a week, only half a tab of Fludro for a few days will work and then it is like a miracle drug for me.

    Pam
     
    WoolPippi likes this.
  13. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    I wouldn't mess with corticosteroids, they can do all sorts of damage. Do more research.
     
  14. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,369
    Netherlands
    I'm messing with corticosteroids, they're powerful but not wild horses. Do research, go slow and monitor symptoms.
     
    jack blogs likes this.
  15. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,369
    Netherlands
    my take is: you are about to do HRT, so have a hormonal panel drawn up.

    Florinef was prescribed to me because I lacked it in the panel. To me it's an adrenal drug first and a vasoconstrictor second.
    Make sure you lack this hormone before you take it.
    Taking it because of POTS is an assumption (but I know little of POTS). You are not certain a shortage of Aldosterone causes your POTS. (Florinef is replacement for the Aldosteron hormone, my endo told me)

    I no longer take Florinef (which worked very well for me), I'm on Hydrocortisone now. This too has Aldosterone properties. It doesn't work as well for low BP though, I need lots of salt (regular table salt, Himalayan Celtic salt etc) to remain upright. At the same time at risk for dehydration. I live by the British site on Addison's disease.

    My Hydrocortison is for adrenal reasons, I have adrenal insufficiency on top of ME. Blood panels are not monitored atm, I'm flying by symptoms alone. For this I have done lots of research and know exactly when I'm in danger of side effects. But still is risky business.

    You are about to take a powerful hormone. Do not exceed the natural occurring dosage in the body ("physiological daily dose"), I don't know what it is for Fludrocortison. For Hydrocortison it's about 20 mg. For Progesteron it's 100 mg (male and female). You NEVER start at this dose. For Hydrocortison I started at 2,5 mg per day.
     
  16. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    If you did a search on this website alone you will find a research paper on corticosteroids and ME, its a recipe for disaster. Obviously if you have a life threatening illness like Addison's its a different matter.
    Why on earth would you want to(among other things) suppress your immune system?
     
    Sidereal likes this.
  17. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,173
    It's part of a basic metabolic panel your doctor would run, it shouldn't be a problem to get it tested. The problem is that you would want your potassium monitored regularly when you're starting fludrocortisone whereas your doctor probably only runs your labs once or twice a year, if even.
     
    lauluce likes this.
  18. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    I'm starting to do my research on fludrocortisone, electrolytes and potassium, when I started this tread I just had bought the fludrocortisone pills out of rage for having been mistreated by a doctor who promised to treat my pots and then refused arguing that it was risky, risky for him. How often do you think potassium should be monitored when taking this drug? Perhaps I'll start as many suggested, trying to increase my blood volume using salts... I gotta research that
     
  19. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    I'm in a sad situation, but laughin is good for the soul... Somebody checked "are you trying to commit suicide or what" on the poll!!! :D
     
  20. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,369
    Netherlands
    hee hee :p
    I didn't vote in your poll but please acknowledge that you're about to take a hormone :nerd:
     
    Sushi likes this.

See more popular forum discussions.

Share This Page