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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. HTree

    HTree

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    Hi All,
    Considering Florinef, for what may be neurally-mediated hypotension.

    In my very first look I see it is a steroid, would affect kidneys mainly (/adrenals) etc.
    STEROID = immune suppressant. How is Florinef safe-- aren't steroids a bad idea with our reactivated viruses? (me: High EBV, pretty high HHV-6).

    Also, what are long-term side affects?

    I'd SOO appreciate hearing your experience with Florinef (just a few words summary if you're exhausted!! good, bad, worth trying, not worth trying...)

    A reason I'm also considering it-- is because I'm told it may allow me to tolerate immunomodulators better? (that's what I heard from one doc).

    However I'm so wary of starting a drug JUST to treat symptoms, but...if it helps me get to where i can treat the actual disease (with immunemods, in theory),. then I guess worth a try? (so long as no major negative side affects?

    Overall I've gotten mixed thoughts from the docs on this one, and my own feelings are mixed. So would love your input.

    Many, many thanks,
    Htree
    stefny likes this.
  2. stefny

    stefny

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    Thanks for posting this HTree. These are my concerns exactly. Except I'm not up on the immunomodulators and I also have lyme/systemic candida as well as high EBV/HHV-6.
  3. Ema

    Ema Senior Member

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    I've taken Florinef for about a year and it has changed my life for the better. I wouldn't be without it. My electrolytes are more stable, I can stand up without feeling like passing out, and my blood pressure is out of the toilet. This recent heat is a strain still but no comparison to last year when I couldn't walk around the block.

    I have reactivated viral and bacterial infections as well and neither low dose hydrocortisone nor Florinef have increased my viral titers. Many of these infections cause HPA axis dysregulation as well and sometimes supplementing these hormones is the only way to help your body fight the infections while working on methylation and other factors that can get these systems working again as well. It's a long process (at least in my case) but the steroids have had no detrimental effects - only positive - in appropriate doses and forms.

    Steroids are immunosuppressive in large pharmacological doses. This is not the case with the doses most of us use to treat adrenal issues. Think about it - we have naturally occurring amounts of steroids in our body and without them, we die. All we are doing is replacing those naturally occurring levels exogenously if they are not being produced for some reason normally by our bodies. This actually enhances our immune response as there can be no immune response without appropriate levels of steroid hormones. This has been such a big mix-up and caused so much steroid fear for so many people that do not understand the difference between physiological and pharmacological dosing.

    My advice with Florinef is to test aldosterone first (at 8AM fasting after being up for 2 hours after salt fasting for 24 hours and in the first week of menstrual cycle if applicable). This will give a good idea if Florinef may help.

    Then it is generally advised to start LOW with Florinef to avoid the massive fluid changes that can cause swelling and headaches. My doctor started me on 1/4 of a 0.1 mg tablet for two weeks. I monitored my BP (diastolic pressure corresponds well to aldosterone and should increase) and got electrolyte labs and then increased my dose up to a therapeutic level for me. It took about 6 months to get there because Florinef builds in the system so changes need to be slow to avoid overshooting the mark.
    jeffrez, HTree, ahimsa and 1 other person like this.
  4. SOC

    SOC Moderator and Senior Member

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    Florinef (with K-Dur to correct the associated potassium loss) has been a major benefit for my daughter. For her, it was the difference between staying in college and having to quit.

    She was taking antivirals for active HHV-6 and EBV infections when she started Florinef. We saw no change in her continually improving condition when she added Florinef -- only a significant improvement in her ability to function.
    HTree and stefny like this.
  5. stefny

    stefny

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    Wow. This is all really good news. I think I might try it. Do you need to take extra salt with it? How do you know how much potassium to replace/supplement? What about electrolyte supplementation? Every doc. I ask has a different answer.
  6. Ema

    Ema Senior Member

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    You do need to take salt with Florinef but I would avoid table salt in favor of an unrefined salt like Celtic sea salt which also has trace minerals. Most people start with 1/4-1/2 teas once or twice a day and end up somewhere between 1-3 teaspoons depending on the final dose of Florinef and electrolyte labs. Sodium is pretty easy to titrate - the worst thing that happens is that you swell up for a day and urinate the excess out.

    But not so for potassium.

    Everyone's potassium needs are also individual though most people can safely take 20-30 mEQ without any issue. I would make sure to get regular electrolyte labs above that amount. It's perfectly likely that one could need much more potassium than that while taking Florinef but the only safe way to know for sure is by getting labs. Too little or too much potassium can literally kill so the importance of monitoring the level cannot be overstated.

    I aim for 4.2 for my potassium level but am happy over 4.0. Slow release potassium is by far the way to go in this case so I would ask for a prescription at the same time as the Florinef.
    stefny, WillowJ, ahimsa and 1 other person like this.
  7. Tito

    Tito Senior Member

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    I was prescribed 0.2mg twice a day. I'm glad I saw this thread and I've just taken for my first dosis 1/4 of 0.1mg as someone suggested. I wasn't told about any extra salt to take or anything. I'm very puzzled by the high dosis of my prescription. I have immune depression and have been positive to toxoplasmosis for 3 years now. Does this prescription make sense?
  8. taniaaust1

    taniaaust1 Senior Member

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    I really thought Ema did a good post on this.. My doctor does the same as Emas doctor did as far as starting it goes.

    I thou disagree that testing aldosterone will show who Florinef may help. Many of us myself included dont have low aldosterone but still find Florinef to be of great help for those issues in which are connected with low blood volume. Having issue involved in which low blood volume is probably playing a factor, is a good enough reason to give Florinef a trial.

    and to the one who was asking about salt. Yes you do need to increase salt intake with this drug. Without enough salt, it wont boost the blood volume.

    Ive been on Florinef since the start of this year.. and havent found it affecting my immune function. (thou I do get reactiving things with the ME). If you are on Florinef, you do need to be carefully monitored due to it can do bad stuff to your electrolites etc. (my doctor always gives me another blood test after a dose increase).

    This drug has GREATLY improved me. 50%+ improvement to what I was able to do before it. With this and support stockings.. its nearly doubled the amount I can do.

    And as far as.. is this drug good for my body goes.. well I dont think lack of blood getting to my brain and having obviously bad blood flow to organs etc would of been being healthy for them and me anyway. Blood carries oxgen and helps to clear buildup of things.. so Im happy knowing my body is getting the blood it needs to places better.
    SanDiego#1, stefny and ahimsa like this.
  9. stefny

    stefny

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    Thanks Ema. I'll see if I can get the bloodwork. I use the Himalayan right now. I've been taking it w/out the florinef per the tilt table doc but I can't tell if it's doing anything. I crave salt anyway, don't know if it's related.
    I've been taking potassium every day - I think 99 mg.s just cuz I eat a lot of salt. Nervous about the amounts, I have heard too much potassium is bad.
    I had asked my doc for saline iv to add to my Meyer's cocktail per something I read on this site. I wonder if that is still a good idea? I get the first one on Mon.
  10. Ema

    Ema Senior Member

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    I think you might want to check the amount with your doctor. That's a lot of Florinef and almost unheard of as a starting dose. I think it makes sense to start it as you have and make sure to add in some unrefined sea salt so it can work properly.

    Do you have symptoms of OI?
    ahimsa likes this.
  11. Tito

    Tito Senior Member

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    Yes it is why is was prescribed. Is table salt okay? Except from iodine, what is the difference with sea salt? Thanks for replying me :)
  12. Ema

    Ema Senior Member

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  13. Tito

    Tito Senior Member

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  14. lindab016

    lindab016

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    I tried Florinef in 1996. I was extremely ill and the tilt table test confirmed NMH. I became much worse on it. My cardiologist was "sure" I'd get better (he didn't know much about CFS) and Dr. Peterson wanted me to try it. I was beyond miserable and Dr. P asked me to please give it a 30 day trial. I nearly made it to 30 days, but did quit early as all of my symptoms (CFIDS) become just about intolerable. I was then starting Ampligen and got so much better. I tried it once again in 2001 during a crash...........same thing, got worse. I refused to take it again, EVER. Since 2001 I have remained on IV fluids twice weekly (started out 7 days a week, then 3 and then 2) and it is a tremendous help.....that along with Ampligen and I'm upright and functional. When I'm off of Ampligen the fluids are a MUST, can't do without them. I have a friend who thrives on Florinef and can't go without. Go figure!
    taniaaust1, ahimsa and merylg like this.
  15. stefny

    stefny

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    Hi Lindab016,
    By iv fluids do you mean saline? I'm starting adding it to meyer's cocktail tomorrow just to try out. Wondering if it's a good idea or if one bag once a week will even make a difference. Adding salt to my diet does nothing and the POTS is worse in the summer.
  16. HTree

    HTree

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    Tito FYI, I was also told to start very slowly 1/4 tab .1 mg, so, sounds like a few others say this as well. (The lower the slower start the better, seems like a good rule of thumb)

    lindab016 -- wow, that does not sound fun! Do you think it could be dose dependent? e.g. did they start you on a really low dose? Do you know about your friend?
    I'm wondering for those it helps, if they start very low and still do not have to go to high a dose to be effective (eg so they get to avoid bad side affects...) Hmm.

    taniaaust1 -- curious what dose you are on? and did it help you right away, or did you ease up to that dose?

    Thanks for your posts.
    Peace,
    Htree
  17. ahimsa

    ahimsa Senior Member

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    I've been on Florinef (fludrocortisone) since 1995. I have changed the dosage over time when adding and adjusting other medications. Right now I'm back down to 1/2 tablet each morning (0.05 mg daily).

    Yes, Florinef is a type of steroid. It "used only for its mineralocorticoid effects" according to most sources that I've read. I've heard of bad side effects (everything from edema to headaches to depression) from fludrocortisone but nothing compared to long term side effects of prednisone use, for example. So while it's true that any drug can have potentially bad side effects they are going to be different from side effects of other steroids. (I think)

    At any rate, I've been lucky in that I've not had any bad side effects. I had some weight gain when I was on higher doses but no problem with that now.

    In case it's helpful to see the whole picture, I take

    midodrine (5 mg, 4 times daily)
    fludrocortisone (0.05 mg in the morning)
    potassium (time released Rx version, 10 mEq in the morning)
    salt tablets (Bio-salt, 1-2 tablets with each meal, about 5 tablets daily)
    lots of water (2.5 to 3 liters daily)
    a few additional supplements (B-vitamin, C-vitamin, magnesium)

    This is the combination I ended up with after lots of trial and error over the years. It's been the same for a few years now but, who knows, maybe next year it will be different. Things change.

    I first got sick in 1990. After a tilt table test in 1995 I was diagnosed with NMH (and I may also have POTS along with the NMH).

    I agree that it is a good idea to start small (quarter of a tablet) when trying Florinef for the first time. See how that works for you for at least a few days, if not a week, before you increase it. And having a home blood pressure unit is also recommended. Good luck!
  18. determined

    determined Senior Member

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    Florinef has been a really good thing for me. When I was treated for cancer, I felt horribly thirsty all the time. I was miserable. The only time I didn't feel horribly thirsty was when I had a chemo infusion - often, I would ask for an extra bag of saline and it worked wonders. My oncologist suggested asking my CFS doctor about florinef and sure enough, it did the trick. I still take it and have tried to taper down, but I still seem to need it, in spite of my success with methylation supplements.
  19. taniaaust1

    taniaaust1 Senior Member

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    Im now on a full .1mg tablet of Florinef for the POTS. (start up Florinef dose was a quarter of one of these tablets for first couple of weeks.. then it was increased to half a tablet which I was on for a few months). Yes in my case it did help right away a bit but with a VERY noticeable improvement when I increased the dose to half a tablet.

    A week ago my dose was increased to a full pill..but right now I arent noticing any improvement from going to this from half a pill (so maybe my best dose will turn out to be half a pill). I had a POTS collapse (with a near POTS seizure) yesterday afternoon thou i'd already had 6 cups of water that morning. Quite possibly maybe I arent having enough salt to notice more improvement with the increase to the full pill?

    I only manage to have about 4g of salt per day and really struggle to make myself have more. (I brought some salt pills but they didnt have much salt in them and were expensive).
  20. taniaaust1

    taniaaust1 Senior Member

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    One issue thou with that would be if you start getting saline IVs and get improvement.. you still wont know if the Florinef is really helping or not and you may then be taking something which isnt for you needed. I personally think that you should notice improvement with the drug if its doing something (but that is only based on my own experience of it).

    (thou from what Ive heard the saline IV improvement only lasts a short time (less then a few days) anyway... so I guess things all would depend on how often you are having saline IVs).

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