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Florinef: your review? And, isn't it a steroid = not good for immune?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by HTree, Jul 20, 2012.

  1. Sasha

    Sasha Fine, thank you

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    That's very interesting - thanks for passing that on. I'm a bit indisciplined in my lying down. I have to do so much of it (15 mins each hour) that I get bored and like to watch TV sometimes while I'm doing it so have my head tilted up a bit. Maybe I'd have to lie down less if I used no pillow.

    How high do you put your legs up?
  2. Sing

    Sing Senior Member

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    End of March, 2012, the FDA was going to approve Droxidopa for Parkinsons, maybe a few other illnesses, but with off label potential for ME/CFS. Then something held it up again. Last I heard was sometime this summer it could get approved. Just checked it out. See this link for the update:
    http://www.drugs.com/nda/northera_120703.html

    The name of the drug, actually, will be Northera, which is really Droxidopa, and the company is Chelsea Therapeutics. So the article is a great example of bureaucratese, the negotiations back and forth about trying to get a drug approved, but it looks hopeful.
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    I put my legs as high as I can comfortably get them. Usually 3-4 pillows or more. I like you cannot lie down and have to do what I have to do when I am up. However, Dr. calls this the Dash and Crash syndrome. I have learned I have to do it!!!!
    It really does help!!
    Sasha likes this.
  4. SanDiego#1

    SanDiego#1 SanDiego#1

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    If I really want to exercise-I even will put feet on headboard. The trick is to do it long enough to change the bloodflow. At least 20 min. 30 is better..NO PILLOW.
    Sasha likes this.
  5. HTree

    HTree

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    SanDiego#1@Sasha
    The legs up, head and back completely flat is a great old yoga position. I do this just lying on a (carpeted) ground and putting my legs straight up against the wall. I think it is good for other things too (relaxation, etc--thus the yogi's do it :)) Just make sure you scooch so that your bottom is all the way the wall, with legs straight up. Basically you are in an L shape against the wall. I find it comfortable. Yes with No pillow :)
    Sing and Sasha like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    My doctors were only willing to do morning cortisol blood tests and 24hr urine testing. My morning cortisol is fine and mid range then.but my 24hr urine cortisol level was abnormally low (out of normal range).. so I must be extremely low at other times of the day other then the morning.

    So that does show Ive had some kind of issue going on.
  7. Sasha

    Sasha Fine, thank you

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    Thanks, Htree and SanDiego - I'm going to try that!
  8. Sing

    Sing Senior Member

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    Of course it does! I would think. Now, if your doctor is willing to let you have a trial run of low-dose cortisol, even 5 mg, once or twice a day (big glass of water or food with it)--not first thing in the am when your cortisol is good but when you start to droop, then around five or so hours later--you would see if it helps you to feel more normal. Cortisol wears off in six hours and is supposed to drop down in the evening and before bed, so I wouldn't ever take it later in the day. I would ask for a trail run--or possibly more testing--though the ACTH stimulation test they like to run is useless except to discover if you have a diseased or missing adrenal gland all together. With ME/CFS, the problem is usually different, a low-functioning HPA axis, as has been documented in research. This issue does not originate with the adrenal gland itself--there may be nothing at all wrong with it-- but rather with the chain of command from the top. The adrenal gland will not issue its hormones without orders from its chain of command. If medical science could fix the problem at the top of the chain of command where it originates, that would be great, but they don't know how. So, in the meantime, what can be done is to add in the lacking hormone in a timely manner.

    I apologize for getting involved in a prescribing manner, but this is a huge gap in medical practice, in my view--the failure to supplement a lack of cortisol. They would not think twice about supplementing a lack of thryoid hormone or insulin....
    SanDiego#1 likes this.
  9. SanDiego#1

    SanDiego#1 SanDiego#1

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    I FIND IT HELPS EVERYTHING-YOU GO GIRL!!!!!!
    HTree likes this.
  10. HTree

    HTree

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    Sing , All
    Re: cortisol, I don't know too much about the neuro-endocrine system (i haev a BA in Bio, but rather a while ago...i've learned a great deal about immunology in recent years! but realizing i need to utilize some energy--ha!-- for a little endocrine study).
    In any case, i digress :)
    -- cortisol supplementation, is that not done often? Florinef mimics adolsterone, correct? Why not use a synthetic cortisol, the other adrenal gland-output? Hmm, must be a reason..?
    My cortisol is quite low in the AM, then normal rest of day--but my sleep cycle is rather inverted/ However I'm not sure if that's cause or effect of the low AM cortisol, but clearly that's a correlation. e.g am I nonfunctional in the AM because of low cortisol, or because of how much sleep schedule has shifted (gradually and rather dramatically to ev) over the years? Hmm.
    I'll ask the ME/CFS folk, but perhaps I should see an endocrinologist again...been years since I have...
  11. Sing

    Sing Senior Member

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    HTree, I don't know about whether or not your cortisol production is causing a sleep problem, or not. I do know that in general we all have sleep problems of one kind or other, and that many of us have a weak HPA axis too--

    The book, "Safe Uses of Cortisol" by Dr. William Mck. Jeffries goes through the history of cortisol discovery and early use, etc. and how this resulted in its bad rap. In the 1940s, maybe 50s too, it was prescribed in massive overdoses--the kind still used only very short term in the hospital to pull patients out of life-threatening emergencies (asthma attacks, surgeries, major accidents, etc.) But in the early days of ignorance, it was used at these very high doses long term, as for rhematoid arthritis. And after awhile these people had some major damage from this excessive cortisol. So that was the beginning of the bad rap.

    Then the patent ran out and cortisol is extremely cheap to make as a generic. Researchers did finally work out correct dosing and learn what a body normally makes, but by this time there was already the bad rap, and no money in studying or prescribing cortisol, so there have only been few and small studies since about low-dose cortisol supplementation for various conditions--ours, being a prime example, where many of us--not all-- could use it and benefit. The long list of dire risks and side effects on the pharmacy sheet pertains to this higher dosing, overdosing--not to what happens when you are supplementing a deficit.

    There are earlier threads going into this subject, so it can be looked further into here, if you want. A lot of other members weighed in with their experience. This is one area--one of many--where we can benefit more from each other's knowledge than the standard medical view out there. That is what I think.
  12. SanDiego#1

    SanDiego#1 SanDiego#1

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    My one suggestion is to be very careful with Florinef. I know some people swear by it, however overtime there are serious consequences for some people. They cannot come come off of it easily and also have a problem even on small doses. Legs start to swell with some and BP goes up. I have to take things I can come off of easily if I have problems.
  13. taniaaust1

    taniaaust1 Senior Member

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    Ive actually have trialed hydrocortisone to try to raise my cortisol at a low dose 10-15mg per day (cause I used my abnormal test results to push a doctor into letting me trial it). If I remember correctly I think I may of taken some in the morning (when my levels do test fine) and a bit at night .. umm it may of been taken when I was going to bed. (maybe I should of taken it all at another time, If it only lasts for a short time? maybe that is why I didnt notice it helping? maybe the morning dose was worn off later in the day?).

    Unfortunately having this morning and night (jjust before bed?) at that low dose at those two times .. I found that it didnt help me in any way (or maybe it just wasnt enough in my case?). I never got sent to a specialist about my abnormal results or had any more advanced testing done. Doctor like just gave up on my abnormal level (it was never retested either while I was on the low dose hydrocortisone to see if it raised to normal 24 hr level either).

    Im seeing a new doctor in a couple of months (he was booked out for 5mths), it will be interesting what he says about things with me and what tests he does. (The new doctor is one with a special interest in hormones and who fixes people who have hormone issues who other doctors havent been able to help)
  14. Sing

    Sing Senior Member

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    That is a shame, taniaaust1. I have come to lots of dead ends too with doctors, even nice ones who try to be helpful. I hope you can get your hormones better tested, or re-tested, by this new doctor.

    The only other possibility re hydrocortisone from my own experience was that the generic form of it seems very poor quality. It seemed both weaker and maybe slowly released, time=released, so that I didn't get it when I needed it but dribbled out much later on when I didn't. This was a problem in the evening and night when it is supposed to be very low, for rest and sleep. The brand name from Pfizer has always worked well for me. (I don't know about these brand names or generics in Australia.)

    A doctor once told me that generics are held to a lower standard, only 80% potency, but then they aren't tested or well regulated after they are put out either, so you may be getting little of the viable hormone. It seems to me that if you had taken a good quality version of hydrocortisone, you would definitely have noticed its effects. I notice in 15 mins. Given that a full replacement dose is these days considered to be 30 or 40 mg, 10 to 15 should definitely be noticeable.
    taniaaust1 likes this.
  15. BEG

    BEG Senior Member

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    Hi Sing,
    Sorry I'm unable at this time to read the entire thread, so I apologize for any repeats. After my tilt table test, I was offered florinef or cortef but not both because the doc said that both are steroids.

    Florinef never did a thing for POTS. I tried it 2 times with the same result -- none.

    Do you take it?
  16. Ema

    Ema Senior Member

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    Florinef and hydrocortisone are both steroids but they are vastly different in action on the body. HC has mostly glucocorticoid effects whereas Florinef is designed to replace the hormone aldosterone. Aldosterone is responsible for fluid balance in the body and regulates electrolytes. Many people take these two together to replace what the adrenals are no longer producing.

    I would stay FAR FAR away from any doctor that doesn't understand this basic difference between these drugs because they almost certainly won't understand how to dose them appropriately either.
    ahimsa and taniaaust1 like this.

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