1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Entrevista: la apelación del millón de dólares de Ian Lipkin para un estudio en el Microbioma
Simon McGrath se aseguró recientemente una entrevista con el mundialmente famoso doctor Ian Lipkin - un científico que sigue creyendo que EM / SFC tiene una causa física - para descubrir más sobre sus planes para un importante estudio del microbioma intestinal y para averiguar por...
Discuss the article on the Forums.

Tips on taking florinef?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Ocean, May 20, 2013.

  1. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I have been thinking of trying this especially as my POTS is bad with summer heat. Does Florinef need to be taken with salt? Potassium? Do you get potassium in a pill or in another form?

    I'm a bit scared to try it because of being sensitive to meds and because of the side effects of depression/anxiety I just read about here today. Are beta blockers a good alternative instead?

    Any other tips for someone possibly trying florinef for the first time? My doctor told me to start on a low dose and maybe even start with an every other day dosing and to call and let them know if I get too bloated, but that was all the instruction I got.

    Also, can florinef, and for that matter beta blockers too, cause sleep problems? I'm just getting my sleep under control and really don't want to mess that up.
  2. Ema

    Ema Senior Member

    Messages:
    2,779
    Likes:
    2,584
    Midwest USA
    I've taken Florinef successfully for almost two years and it has been a miracle for my OI.

    I would agree to start slowly. I started at one quarter of a 0.1mg tablet and increased by 1/4 tablet every two to four weeks. Florinef is a very long lasting steroid and it takes at least two weeks to get the full benefit of a dose increase.

    I monitored my BP daily (diastolic is associated with aldosterone which is the hormone replaced by Florinef) and when it got up in the mid 70s I stopped increasing.

    I also got labs every two weeks at first to look at sodium and potassium levels. It is important to supplement both while taking Florinef. I try to keep my sodium at 142ish and my potassium at 4.2 to 4.5. Slow release potassium is key to getting levels up because the body keeps potassium levels tightly regulated and will dump potassium commensurate with what is taken in unless it trickles in. This is a prescription item or can be bought over the counter by mail from Canada.

    I did not notice any effect on my sleep at all.

    Beta blockers can interfere with thyroid conversion so I'm not a fan of everyday use.

    Hope it works for you too!

    Ema
    ahimsa likes this.
  3. lnester7

    lnester7 Seven

    Messages:
    1,034
    Likes:
    855
    USA
    I love my florinef. Start slow as advised. I take 4g of salt a day (was told to do 6g but it was too much for me BP will let u know) I do one coconut water a day that keep my potassium at normal levels, I would do a banana a day but that raises my histamine so I avoid it. But they will test your potasium sodium every 3 months so you will know what your number will be.
  4. ahimsa

    ahimsa Senior Member

    Messages:
    957
    Likes:
    701
    Oregon, USA
    Ocean, I agree with Ema that a time-released prescription (I take 10 mEq dose of Klor-Con - http://www.rxlist.com/klor-con-drug.htm ) is very helpful along with Florinef (fludrocortisone acetate). It also helps to take more salt (either on food or salt tablets) and extra water (2-3 liters daily). The best thing to do is start slowly and experiment and see what works for you. Every other day might not be a bad idea.

    I've never monitored my sodium and potassium levels quite so closely. My doctor just measures them once per year. I rely more on how I feel. For example, I might substitute a liter of pedialyte (generic version, unflavored) for one liter of water on bad days. That gives me lots of extra sodium/potassium.

    I am taking much less Florinef now that I'm also taking midodrine. I found that the Florinef started slowly having less effect after about 4-5 years of taking it. But I still take a 1/2 tablet daily along with the midodrine.

    The only bad side effect I remember getting from Florinef is that when my dosage went up ( at one point I was taking 1.5 tablets per day) I did seem to get more rashes on the insides of my elbows (the only place that I ever got them). If Florinef affects the immune system in some way then maybe this is something I would get anyway and I just get it more often due to Florinef. But I'm not sure. I never bothered to go to a dermatologist (minor rash is the LEAST of my problems) and my primary care physician never identified what kind of rash it was.

    I hope it helps you! Drugs to treat OI often seem to be very hit or miss. What helps one patient has really bad side effects for another one.

    Sometimes I feel like I'm just groping around in the dark. But at least I'm doing okay and relatively stable these days (knock wood).

    (edited to add -- "doing okay" does not mean well enough to work, it just means I'm not housebound or in bed all day ...)
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks so much everyone. This is really helpful. My doctor didn't mention anything about taking sodium and potassium or testing the levels. Is midodrinealso a POTS treatment?
  6. ahimsa

    ahimsa Senior Member

    Messages:
    957
    Likes:
    701
    Oregon, USA
    Midodrine is a pretty well known treatment for orthostatic intolerance (OI) in general but not POTS specifically. It's one of the drugs listed in the Johns Hopkins patient handout, for example. (see http://www.cfids.org/webinar/cfsinfo2010.pdf ) I think this drug is mostly prescribed for people who have dropping blood pressure as one of their main problems.

    One side effect of midodrine is that the blood pressure can go too high, especially while lying down. So if your resting blood pressure is on the high side, or if for some reason your BP spikes at times, then doctors usually don't want to prescribe midodrine. Also, you are supposed to take the last dose of the day at least 4 hours (or more) before lying down or going to bed for the night.

    Unlike some other drugs midodrine only lasts 3-4 hours. The bad news is that means the patient needs to take a dose 3 or 4 times a day. The good news is that if the drug does not suit you then at least it will be out of your system soon (unlike drugs that take days to build up or wear off).

    Some people on this list have reported bad side effects from midodrine. So it can be bad for some people. Luckily, I've never noticed anything other than goose bumps or a tingling feeling on the head (like your hair standing on end).

    Here's what it says on one web site I found with various dysautonomia treatments ( http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196 ) :

    I hope this helps.
  7. ahimsa

    ahimsa Senior Member

    Messages:
    957
    Likes:
    701
    Oregon, USA
    I'm sure most folks have seen this but here's the dinet.org web page for "what helps" (drugs and other suggestions):

    http://dinet.org/what_helps.htm

    Florinef and Midodrine are on that page along other drugs, supplements and lifestyle changes.
    Ocean likes this.
  8. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,382
    Likes:
    4,260
    USA
    Previous posters have already said most of what I would suggest. :) The only slight differences I have in my protocol are that I drink 3 liters of electrolyte fluid (ElectroMix in water) instead of taking potassium-only supplements. My cardio said I need to drink that much fluid to get the best effect from Florinef. I also take a calcium-channel blocker instead of a beta-blocker to regulate my HR.
    ahimsa likes this.
  9. Sparrow

    Sparrow Senior Member

    Messages:
    660
    Likes:
    746
    Canada
    Sorry for the tangent, but I've been considering starting Florinef too, and would love some input.

    Did everyone using the Florinef have a problem with diastolic pressure being too low? My systolic is the main problem for me. Diastolic is actually close to the normal range. And my blood pressure seems to go up a little when I'm trying to stand, rather than down.

    But my heart rate is SO high still when I'm upright, and I'm clearly getting blood pooling in my feet when I sit/stand too long...
  10. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,382
    Likes:
    4,260
    USA
    As I understood my cardio, the way your body responds to low blood volume can vary. My BP and HR go up when I stand. That's less common than BP dropping and HR increasing, but it's a known response. Florinef definitely helps me. It hasn't changed my resting values much, but it definitely keeps then from going too high when I stand. I'm noticeably more functional when I'm upright.

    Annoyingly, I got a virus of some kind which knocked me back to pre-Florinef conditions. :mad: So now I'm back on Verapamil again to see if we can bring my HR back down again. **sigh** It never ends, does it?

    I'd say Florinef is definitely worth a try. Just make sure you get enough electrolyte fluids. :)
    Ocean likes this.
  11. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I like that it can be used as needed. I'd like to ask my doctor about it. Thank you!
  12. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    So the calcium channel blocker works to keep the heart rate in check with POTS? In what way is it different from a beta blocker? Why were you prescribed that rather than a beta blocker? Thank you!
  13. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,382
    Likes:
    4,260
    USA

    I have asthma. As I understand it, beta-blockers block the action of an asthma rescue inhaler, so not a good idea to take if you have asthma. :) Calcium-channel blockers are used for HR regulation in asthmatics. Or so I'm told. ;)
  14. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thank you. I do have asthma too, though mild.

    One more question about florinef, have any of you who are ladies noticed it having any effect on your menstrual cycle? I read that that could be a possible side effect.
  15. Lilly1212

    Lilly1212

    Messages:
    7
    Likes:
    0
    Can you help me? I started Florinef before Christmas...My aldosterone was a 2.....Ive slowly increased it...up to 1 1/2 tabs a day...I take 60meq of slw release K and sea salt water.......I also take 25 mgs of hydrocortisone a day....Ok, Im gaining weight hand over fist.....as I increased my florinef I was able to wean off of the very small dosage of estradiol I was taking, I also was ablt to raise my NDT to 2 grains FINALLY!.....But now on my second week off 1 1/2 tabs of florinef and i feel I may have gone too high.......i will give you some blood pressure readings:the first is lying down and the second is immediately standing up: these are random: 133/86:127/89, 129/86:125/90, 137/86:112/88, 132/88:137/88, 127/79:146/88, 125/78:125/83,148/98:118/87,136/88:116/88....

    This has been since taking 1 1/2 tabs of Florinef......Ive also read that estrogen if high can block aldosterone....well Ive just stopped the small dose of estradiol cream that I was using about five days ago....so, Im wondering if my aldosterone has risen on its own because I am no longer using the estradiol cream......

    Ive been after blood presssure readings that raise 10 points when I stand....so that is why Ive been increasing the Florinef...its happened a couple times but its not consistent.......Im lost...I feel cruddy today...tired, nasueated, anxious......heart races after I take HC...Im lost...my face is wllen from the HC and the Florinef....But the florinef has helped my cortisol work better...I am able to raise Natural dessicated thyroid which is great, Im off of testosterone cream. off of estradiol cream....which are all positives, but I don;t know if Ive gone way to high with Florinef, over did it...Should I go and have my aldosterone level checked? Will that help? Am I now able to decrease HC dosage now? I just dont know what to do???? My doc is of some help but not totally.....Im very lost.....what do you thin of these blood pressure readings? Ive been on 1 1/2 tabs of florinef for one week now......sodium was at 139 and potassium was at 4.2 right before I started the 1 1/2 tabs.....Ive since increased my K to 60 meq a day....salt doesn't budge from 139, but that was before I stopped estrogen....Im so lost and gaining so much weight......any help...than you...anybody please!
  16. Ema

    Ema Senior Member

    Messages:
    2,779
    Likes:
    2,584
    Midwest USA
    @Lilly1212, Sorry I just saw your message.

    Are you still having problems with the Florinef?

See more popular forum discussions.

Share This Page