Your Experiences With Fludrocortisone (Florineff)?

[Freaked]

I was prescribed a low dose of fludrocortisone yesterday, and was wondering how other people had found it. I have POTS with definite hyper-POTS tendencies and occasional BP spikes.

Did you find it helpful to your symptoms? Did you get any of the side effects like weight gain in icky places, worse tachycardia, low potassium or worse sweating? High bp? Did you manage to come off it eventually, and how did that go?

Never known anyone on it and a bit wary, so any accounts would be helpful.

[Christy_D]

My son took it for 2.5 years and it helped immediately. It stopped his dizzy spells right away. The spells did not return when they took him off of it. He did gain weight, not sure how much was from the fludrocortisone and how much was from doxepin(also causes weight gain). They tested his potassium occasionally and he never had problems with that either. That is one medication that was helpful and was not hard for him to come off of either.

My daughter started it 2.5 weeks ago. I'm not sure how if it is helping her as much yet, she did gain 4 pounds but that was much needed.

[Guest Alex]

Freaked,

my experience with florinef was not a good one. Here are the highlights of it though:

I was prescribed florinef for hypovolemic POTS (turns out I don't have this type of POTS after all) and used to take 0.2 mg a day. I don't think it ever helped me, in fact it made certain things worse and I'm glad I managed to come off it safely.

Before starting it my BP has never been an issue - normal fluctuations, but all within reasonable limits. While on florinef I had several hypertensive episodes (160s/110s) - I even landed in the ER with some of them.

Potassium has been a major issue for me and several ER trips later I figured I needed up to 5 grams of potassium a day to maintain a proper level in my body (that's the equivalent of a lot of bananas ). In hindsight, I think my magnesium levels were low as well as I used to complain about muscle cramps - they have gone since I came off the florinef and I started taking magnesium supplements (better late than never, right?)

Yes to the weight gain - my dr kept telling me it's water weight but I haven't lost it despite being off the med since the beginning of the year. Also - a weird one, but listed as a potential side effects - uumenstrual irregularities (I won't get into more details as it can be tmi).

Another major issue for me were the 24/7 headaches that were unresponsive to regular OTC painkillers. They are gone now that I'm off it. As a side note, I was advised not to take anti inflammatories or aspirin with florinef as they are all harsh on your stomach and may cause problems like ulcers and bleeding.

I did manage to wean myself off it and I can say that my taper has been uneventful. I took my time and cut 1/4 of a pill every week - so it took me 8 weeks to go from 0.2 mg to zero, but if I'd ever had to do it again, that's the schedule I'd follow. I also gradually cut the potassium supplements accordingly.

The moral of the story - you may have a completely different experience on it than I had. I've read (and you can search the forum for more posts on florinef) many success stories with it, hopefully you will benefit from it.

One thing that is definitely worth keeping an eye on while on it - your blood levels of potassium, calcium and magnesium.

Almost forgot - I learned about this after I finished my taper as my dr and my pharmacist never bothered to tell me - you may need to keep your pills in the fridge.

I hope this helps.

Alex

[jknh9]

I didn't tolerate it well. Like Alex, I had the horrible headaches which turned into full-blown migraines from time to time and would not respond to regular otc painkillers. I had never had a migraine before the Florinef. I was prescribed 0.1 mg for hypovolemia and low bp, but it didn't seem to make much of a difference for either. I came off of it about a month after I started because I didn't see any positive changes. I didn't have weight gain, but the migraines made me so nauseous I wasn't eating enough.

[louloutinks]

I have been on florinef for 2 months now. At first I had severe headaches. They stopped but they have started again recently it it is now head pressure. I have had numbness in cankles, terrible tremors in right arm that are very embarrassing, very high bp (mine is usually very low), heart palps, breathing is worse than before, my heart rate is still very high, keep feeling extremely hot and breaking a sweat. My pulsatile tinnitus has returned with the head pressure.

I am finding I am less dizzy but with all the other things I am getting by taking it, I am wondering if its worth it. I wanted my heart rate to be slower and this is not helping with that an ounce as it was 168 on standing earlier.

[PackersFan]

I've been on it for a month and i think it's slowly been helping with my heady/imbalance/dizzy feeling. My Dr. told me it'd be a while and it's a process. I actually had my month follow up today with him and showed him my blood pressure tracking over the past 10 days. It's been in the 110's / 60-70's. I still have a some of the dizzy issues amongst other things. He bumped up my prescription to taking it twice a day now to see if that helps. So far it seems to be slowly doing something. I still have days where my bp is low and i feel a bit faint/dizzy, but overall i think it's improved.

As far as side effects. I'm a guy (and i'm pretty slim) so the weight gain was a welcomed side effect. I gained maybe 2-3 lbs over the past month. It's definitely not muscle though as i can tell i look a little softer even with all my working out. I get slight headaches every once in a while but i'm not sure they're related to the florinef.

It seems like i'm usually pretty sensitive to medications and i can honestly say other than the small weight gain i haven't really noticed anything.

Overall i've had a good experience with it!

[katrina13]

I've been taking it for 12 years, since 2001-- initially there were some dosage issues (how much to take, when to take it), but at the time it was the only option offered to me, and I had nothing to lose at that point, so I was determined to keep with it. Took a year and a piece to work all of it out, but it has helped me *tremendously*.

As for side effects--It did make me super jittery at first, until my doctor lowered the amount and had me take the 2 doses farther apart. I gained a few pounds when I started it, but I was underweight before that, so I didn't mind very much. It also made my BP very high for a number of years, and by the time a new GP insisted that I stop it in 2009, I was having ankle/foot swelling.

I didn't do well after tapering off, so my GP put me back on with a lower dose. That dose didn't help nearly as much, but now Dr. Grubb has me taking an extra dose every third day, and things are better and my BP is still fine.

I guess, in summary, it's complicated! There might be better options now, or other things that work for different people, but if you do end up with fludrocortisone it might take some fussing with the dosage/times to get things right.

Good luck! I hope you find what helps you the most!

[AllAboutPeace]

I was prescribed a low dose of fludrocortisone yesterday, and was wondering how other people had found it. I have POTS with definite hyper-POTS tendencies and occasional BP spikes.

Did you find it helpful to your symptoms? Did you get any of the side effects like weight gain in icky places, worse tachycardia, low potassium or worse sweating? High bp? Did you manage to come off it eventually, and how did that go?

Never known anyone on it and a bit wary, so any accounts would be helpful.

Hi Freaked,

I'm not hyper pots (although I'm quite sure I would have been diagnosed that way in the beginning). Florinef has been helpful for me. If you search my post "mad love for Florinef" or something like that - I described in detail how it affected me in the beginning. (I would link it but i dont know how to do it from my tablet...) It took four full weeks to really make a difference for me.

I started at .1 and in the 5th week I went to .05 because I was feeling quite bloated and I wondered if I I could get by on a smaller dose. Over the next several months the positive effects slowly deteriorated (so I think I need the .1). I went back to .1 for a few weeks then as per docs orders stopped it for my ttt. So after 9 mos on it, I tapered off in about 5 days with no side effects. I stopped it for about six weeks due to trying another med but I am back on it now, because I could see how much it was helping me.

So, for your questions:

Helpful? Yes

Weight gain? 5lbs with a bloated feeling, but I find now that adjusting salt/water intake resolves that

Worse tachycardia? No, helped with that

Low potassium? No. I had low potassium when I first got hit with pots, but no issues on Florinef. I don't use supplements but do make sure I get foods with potassium in it.

Worse sweating? I stopped sweating when I got pots and I started sweating during exercise (appropriately) while on Florinef

High BP? It only raised my low BP by about 5-8 points so I had no extremes with it.

Issues with stopping? None, except the return of pre-Florinef state.

I was really hesitant to try it in the beginning, but I was glad that my doc pushed me to do it. IV saline was very helpful for me, so that fact gave me the extra push in thinking that Florinef might be as well, since they both work on blood volume.

Hope it goes well for you

[Akgirl]

I have been on Florinef twice a day since January of this year. It has made a huge difference on my tachycardia. And in general my overall pots symptoms. I have infortunautly gained about 20 lbs from it and most of the weight is on my stomach . I have a hard time with this because weight has never been a issue for me until now. As far as Bp it has also helped my swings with this as well. As far as other side effects, headaches and insomnia. I have both of these! I take topamax for the headaches and 75mg of over he counter sleep aides every night to sleep.

[Freaked]

Well I started on the florinef, and had a pretty horrible two days. I already had low potassium beforehand and I've had pretty bad cramping and heart racing/ectopic beats. So I've come off it again until I can get my potassium better monitored.

[flyingsquirrel]

I was on florinef briefly when I was little and had a bunch of side effects (I think mostly swelling, potassium related). I was taken off it and have been doing licorice tea ever since and it has been working well with no real side effects. I do supplement with blackstrap molasses (for potassium, iron, mag, and calcium) so I don't get leg cramps/muscle weakness (and because I don't eat red meat).

[Vikings Fan]

I started taking it in 3 months ago to get my blood pressure up a bit so I don't feel like passing out when I stand up. It has done a good job with that, but now when I start to exercise my heart rate jumps into the 150's for a while (still doing warm ups) and then drops below where it should be. Then it recovers and maintains an appropriate reading for the remainder of the workout. Never experienced this prior to taking fludrocortisone.  I have gained 2 pounds but don't know if I can attribute that to taking the drug or not.

[Lily]

My doc did not tell me to increase up to a full dose, but I decided to do that based on anecdotes on the internet.  I started with 0.05 mg for 1 week, then 0.075 mg for a week, then the full dose of 0.1  mg.  No weight gain, no tachy, BP stayed normal.  I might have had a headache for a few days, but I can't remember.  I love florinef.  It has made a huge difference for me.  I feel better without the compression hose than I did pre-florinef while wearing it.  I feel almost normal, as long as I am careful to get enough salt and water.  As for potassium, I drink low-sodium tomato juice (900 mg K  per 8 oz).  

[Debbie Rose]

Fludrocortisone was great for me...it stopped the drop in BP when I would stand-still does drop but not as bad. I have had headaches all my life but did not notice an increase being on it and no drastic side effects are noted. I do admit to occasionally forgetting to take it and I am weaker and dizzier with bigger BP fluctuations when I forget

Debbie