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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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  1. jimells

    jimells Senior Member

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    After 8 years of being sick, perhaps I am finally making some progress. Today the FNP wrote a prescription for florinef for what appears to be POTS. My official diagnosis is, "you have some kind of autonomic disorder".

    I know that's not very specific, but compared to the way I've been treated up to now, this is HUGE.

    If the florinef helps with my OI, is there much chance I will feel better overall? The orthostatic intolerance right now is mostly a nuisance. I feel so horrible overall, I hardly spend any time upright, so there's not much standing to tolerate!

    Does this drug cause the kind of dependency problems seen with prednisone? That drug is really scary, the adverse effects are so bad.
    Valentijn likes this.
  2. panthere

    panthere

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    My husband took it couple of years ago for OI due to CFS and it really helped his standing. However, he found that he had to continually increase the dose to get the same effect. He later switched to pure aldosterone from Canada which has been helpful but not like Florinef.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi jimells,

    Florinef, is tricky. I had no results from Florinef for OI--nothing but headaches! But it does help a lot of people, so be hopeful! You could possibly feel better overall on florinef, but it is not likely. It is really an OI(ish) type of drug. Some people get weight gain on it, so be alert.

    It does cause a kind of tolerance I think and you have to back off slowly or increase your dose because of tolerance. The causes of OI can be many. I tried many drugs (before I started to try to treat causes) and for me norepinephrine reuptake inhibitors (strattera, low dose) worked like a miracle for OI. But is was not a cure, so I weaned off it after a while and looked for something to help with the cause. My OI is much better now, though I do use compression knee socks if I have to be on my feet.

    Good luck!
    Sushi
  4. SOC

    SOC Moderator and Senior Member

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    FWIW, my daughter took Florinef for about a year. It was a big help to her. Her OI did not seem to affect her continuously, however. Her worst problem was occasional unexpected drops in BP. Florinef and support socks eliminated the random BP crashes and helped her feel a bit better overall. As she got better (with Valcyte and Valtrex), she didn't need it anymore, so she didn't end up staying on it long enough for her to develop a tolerance.

    My guess is that Florinef is not enough for really bad OI, but makes a noticeable difference in less severe cases.
  5. Wayne

    Wayne Senior Member

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    I once took a single dose of Florinef and felt like I wanted to die. I never took another dose; seems like it may have taken me a few days to recover. If you're sensitive to medications, like most of us are, you may want to consider starting out with a small dose instead of going right into the regular dosage recommendation.

    Wayne
  6. SOC

    SOC Moderator and Senior Member

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    BTW, you all know that Florinef can seriously deplete potassium so you need to take a potassium supplement along with it?
    WillowJ and ahimsa like this.
  7. Ema

    Ema Senior Member

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    Florinef changed my life. I went from not being able to stand up without taking forever about it and being horribly dizzy to being able to get up normally again. I am now able to hold onto salt again and no longer am spending my days dehydrated and/or hooked up to a saline IV. I know it does not work for everyone, but I would not want to be without it until such time as my body decided to make aldosterone again on its own. I have not noticed any tolerance.

    For what it is worth though, I would want to have a full evaluation before starting with Florinef. Low cortisol can cause many symptoms like OI as well and Florinef is not the best treatment for that.

    Have you had any/all of the following tests specifically the saliva cortisol and thyroid testing? Remember that "in range" often still means symptomatic for many of us.

    Saliva Cortisol 4x/day
    TSH/FT3/FT4/RT3
    TPOAb/TGAb (thyroid antibodies)
    CMP
    Vitamin D
    Vitamin B12
    Magnesium
    Full Iron Panel (Serum Iron, TIBC/UIBC, % sat)
    Sex Hormone Labs (Estradiol, Progesterone, Free Testosterone)

    Florinef is a potent steroid. This isn't a bad thing but it does mean that one needs to take some care when starting and titrating up the dose. My doctor recommends starting at 1/4 of a 0.1 mg tablet and then holding the increase for 1-2 weeks. During that time, one should monitor the BP (diastolic usually best corresponds to aldosterone and around 70-80 is considered good). At the end of two weeks, one should get electrolyte labs done. My goal was for sodium to be in the low 140s (142-144) and potassium to be around 4.2. Then one can increase salt consumption (I use Celtic sea salt but salt stick tablets will work as well) and slow release potassium. Then repeat the process until symptoms are gone, labs are good, and BP is 120-130/70-80 ideally.

    I don't know anyone who is on Florinef without taking supplemental salt and potassium. Florinef will waste potassium big time and it is easy to get into a pickle with low potassium. Slow release potassium is key (your doctor can prescribe this) and regular electrolyte labs are mandatory while taking supplemental potassium. And Florinef will not work without enough salt so that is critical as well.

    I did not have any issues with headaches or fluid retention by titrating my dose the way I described above. It did take a lot longer to get on a full dose but I think it was worth it.
    ahimsa likes this.
  8. August59

    August59 Daughters High School Graduation

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    Glad to here the aldosterone is helping. Just to clarify things a little further is this compounded aldosterone?
  9. ahimsa

    ahimsa Senior Member

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    My limited understanding is that florinef (generic = fludrocortisone) is in a different class of steroids from prednisone. It is a steroid but more of its action is in the mineralocorticoid category than glucocorticoid category. So while there may be some weight gain there won't be problems with very large weight gain or "moon face" that are associated with prednisone. And I think that patients who take it for orthostatic intolerance are on lower doses than those who take it for Addison's disease. (or maybe it's just that Addison's patients take other steroids in addition to florinef)

    I agree with what Ema said about dosage. Start very small, such as 1/4 of a 0.1 mg tablet, and then work up slowly. The 0.1 mg pills are small. I can just break the pills in half with my fingers (I now take 1/2 of a 0.1 mg tablet each day) but to get quarters you'll need a tablet splitter (found at most pharmacies or look online).

    I also agree that I don't think florinef will help much unless you also add extra water and salt. I drink about 3 liters of water and take 5 salt tablets (Bio-Salt, taken with meals) daily. Like the drug, ramp up on the extra water/salt slowly.

    Florinef did help me but like others have mentioned the effects wore off after some time (for me it was after a few years). At first I increased the dosage (was at one and a half tablets daily for a while) but that only helped a little bit. And I didn't want to keep increasing the dose. What worked for me was to add a new drug, midodrine (a vasoconstrictor), that worked even better for my specific problems. I kept taking the florinef but reduced it to half of my initial dosage. For me taking both of these drugs together works better.

    As others have said, while on this drug you should check your electrolytes (my doctor checks mine once a year) and you may want to take potassium supplements. I take a prescription, time-released version of potassium (some generic version of Klor-Con, 10 meq).

    As with so many different problems, treating autonomic dysfunction is difficult. A drug that works well for one patient may have no effect, or have horrible side effects, for another patient. It's up to the individual to experiment to find the right combination.

    One thing that I found most interesting is that before I started taking fludrocortisone I would wake up 1-2 times every night to urinate. After adding fludrocortisone, even though I was drinking *a lot* more water, I never got up to go to the bathroom during the night. So, for me, it must be working on that hormone/chemical/? (vasopressin? forgot the name) that helps the body to retain fluids.

    Good luck!
  10. panthere

    panthere

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    florineg

    Yes that is correct, but you cannot get it in US. We buy it from a Canadian pharmacy
  11. jimells

    jimells Senior Member

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    northern Maine
    thanks for all the replies. I've had most of the tests suggested by ema. I've found that asking for specific tests is tricky. The doctors don't like it very much, and tend to 'Just Say No'.

    The NP said to take .1 mg tablet per day, but I'm starting on just a half. It's sobering to think that such a tiny amount can potentially have severe adverse effects. Can a person even *see* one ten-thousandth of a gram of anything? I started last night, and today I feel totally wiped out, but that may be 'cause I drove myself to the doctor's office on Wed, about 2 hours round trip.

    I've been drinking a version of Dr Cheney's 'homebrew' for about a year: magnesium citrate, salt, and 'No Salt' potassium flavored with a little lemon juice. I've been drinking about a liter of this per day, I'm thinking I'll need to try to increase that. Funny how the NP never mentioned increasing water/salt/potassium intake. Neither did the pharmacist, although she warned me to watch for possible mood swings.

    Since this is a steroid, will Congress want to interrogate me, like the baseball players? If called, I would certainly go, and tell those gangsters a thing or three!
  12. ramakentesh

    ramakentesh Senior Member

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    A recent survey over at Dinet found Florinef to be the most helpful drug for POTS of the respondents.
  13. taniaaust1

    taniaaust1 Senior Member

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    Ive just started on Fludrocortisone and that is what my specialist is having me do. 1/4 of a 0.1mg tabet for 1 week, then half a tablet for 2 weeks.. before going onto taking a full pill.

    Im currently on day 3 of taking it (so currently only at a quarter of a 0.1mg pill) and are finding this already has basically DOUBLED the amount I can stand during the day.

    Ive gone from being able to stand (broken up blocks thou) from 1-1.5 hrs per day to consistantly 1.5 hrs per day (with medical thigh high support stockings).. to being able to stand for 2.5 hrs a day (broken up time) with the florinef, so so far its being a massive help. Hopefully my ability to stand will keep improving as I increase the dose.

    I think I remember someone saying it affected their sleep, my specialist said to take it early in the morning as possible so it doesnt do that.
  14. taniaaust1

    taniaaust1 Senior Member

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    I noticed too that the world wikpedia also is saying that "Fludrocortisone is the first line of treatment for orthostatic intolerance and Postural Tachycardia Syndrome as well."

    Its my own specialists 1st drug tried for POTS too, due to his own experience with his POTS patients.
  15. taniaaust1

    taniaaust1 Senior Member

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    Not good you werent told that .. both my specialist and the pharmacist both told me to make sure I was having salt and also to make sure Im drinking a decent amount while taking it as it needs those to work.

    No one thou mentioned to me about possible mood swings.
  16. ahimsa

    ahimsa Senior Member

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    I've seen this mentioned before--perhaps it was on this forum? I think I remember someone mentioning that it caused depression for them.

    I've never had any side effects from fludrocortisone (Florinef) other than a bit of weight gain. But I guess some folks do have problems bad enough that they can't take this drug so it's good to be aware of all possible side effects:

    http://www.rxlist.com/florinef-drug/consumer-side-effects-precautions.htm
  17. richvank

    richvank Senior Member

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    Hi, all.

    For what it's worth, I think that treating the partial methylation cycle block in ME/CFS so that glutathione can come back up to normal is likely to restore both aldosterone and antidiuretic hormone secretion, and thus bring the total blood volume back up to normal, correcting the POTS and OH in many cases.

    Best regards,

    Rich
  18. ramakentesh

    ramakentesh Senior Member

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    Hi Rich - can you provide any research evidence that demonstrates that?

    I found that florinef initially made me feel wired when I took it. TOok a while to get over that feeling and when i up the dose in any way it does that again so i wake up kinda antsi for about four or five days.
  19. richvank

    richvank Senior Member

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    Hi, ramakentesh.

    No. That's why I wrote "I think..."

    As I recall, I have heard from a couple of people who found that doing the methylation treatment did help with orthostatic problems, but it hasn't been looked at with a clinical study.
    I'm basing the "I think" on my hypothesis, which is consistent with known biochemistry and physiology, as far as I can tell, but it is still just a hypothesis.

    Best regards,

    Rich
  20. ramakentesh

    ramakentesh Senior Member

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    Thanks Rich - I think most POTS patients as an example would agree that perhaps there is more going on that simply blood volume deficits so I have been following the methylation and other theories for some time. Interesting also that recent POTS work has moved into the realm of CNS abnormalities rather than ANS ones.

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