Suejackson Florinef

Discussion in 'Fibromyalgia Main Forum' started by Albertina, Apr 3, 2007.

  1. Albertina

    Albertina New Member

    Dear Suejackson,

    Florinef is Fludrocortisone, isn't it? How long do your children take this? Every day for several month or for the whole year?

    Thank you for sharing your experience!

    All the best, Albertina
  2. fivesue

    fivesue New Member

  3. Slayadragon

    Slayadragon New Member

    Hi Albertina,

    I haven't seen Sue on the board for a while, but she does have her own blog about her family's experiences with CFS. Google the following:

    "Sue Jackson" CFS

    I've been using Florinef on a regular basis myself for many years now, in order to increase my blood pressure. On occasion it has fallen to 80/55. My doctor thinks (and I agree) that if I can keep it at a relatively high level (e.g. 110/70), I do much better. I have used .1 (and occasionally .2) mg on a regular basis to keep it at the higher level.

    Not everyone has good experiences with raising blood pressure with Florinef, but I've found it very useful.

    Best, Lisa

  4. Albertina

    Albertina New Member

    yes, I profit from Fludrocortisone too, even a lot. I take .2 mg a day in the morning. Never any side effects. My blood pressure went back to normal. The first 2 years I took it about 3 month, then stopped for 2 month and so on. After a while I discovered I couldn't stop it any more, that's the only problem. I ask myself if once upon a time I will be able to live without ...

    What is your experience with depending on Florinef?

  5. Slayadragon

    Slayadragon New Member

    After a lot of work over time, my adrenals got stronger in general. This included my need for Florinef, which decreased. I rarely use it now.

    Things that I think helped my adrenals were:

    * Supplemental DHEA, with amounts determined by frequent testing
    * Occasional supplemental Cortef (hydrocortisol), when in stressful situations (so that my adrenals wouldn't have to release as much cortisol on their own and then get tired)
    * Adrenal glandulars
    * Large amounts (6-15 grams) of Vitamin C daily, as tolerated by bowels
    * B vitamins (including panothenic acid)
    * Licorice and ginseng
    * Trying to avoid stress

    It took almost a decade before my adrenals gradually went to normal. I never had any evidence that I was addicted to any of the stuff I took.

    I also am not sure which of these things were and were not helpful.

    And most important, the things that I took may not be appropriate for other people. Testing of adrenal hormones (meaning DHEA and cortisol) are essential in knowing how much to supplement (if at all). Measuring blood pressure frequently is important with regard to deciding on Florinef dosages.

    I've had several doctors experienced in prescribing adrenal hormones, and none of them have ever talked about any of those hormones (including Florinef) being addictive. With that consensus and my own experience, I tend to think that's likely true.

    Best, Lisa

    [This Message was Edited on 04/05/2007]

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