Florinef Dangerous?

[Pianist]

There's many reasons to believe Florinef might help me (see below). I saw my family doctor and asked him if he thought I should go on it. He looked it up in his book and said he didn't want to put me on it because it could be dangerous (I think he saw the part about Potassium). I've read a bunch of articles from doctors saying the opposite, notably this one:

http://www.pediatricnetwork.org/medical/CF...experiences.htm

So have any of you been warned that Florinef is dangerous? I've notice that quite a few members are on it.

I have a lot of the symptoms of CFS. Desmopressin + salt made me feel incredible for a while, but over the past 4 months the symptoms have returned. My metabolism seems to be adapting (in a bad way) to the not urinating for 9 hours a day, and I've always gotten water intoxicated from the Desmo very easily. Initially the water retention part of desmopressin made me feel incredible. I have to use salt to make sure I don't get water intoxicated. So, Florinef would give me the same benefits without having to worry about getting water intoxicated. I'd just have to make sure my Potassium stays in a normal range.

[MightyMouse]

There are plenty of us who've been on florinef safely for years and years. Most who take it also take a potassium supplement. From my perspective, there are plenty of meds being used out there for folks with POTS, NCS, etc. that are WAY more dangerous. For example, for me, a beta blocker would have me fainting multiple times daily because it would keep my heart rate too slow while my blood pressure is dropping...

danger is a relative term... weighed against the potential benefits. It's a choice only you can make in conjunction with your doctor. As for getting low potassium, that's not something that happens quickly--in fact, I didn't need potassium supplements for the first few YEARS that I was on florinef. Only in my final year, did I take 8 mqs of K.

Nina

[lthomas521]

In my opinion, the most dangerous thing about POTS is that it deprives your brain of blood. The second most dangerous thing is that you might faint and fall down and hurt yourself, perhaps seriously. So Florinef could help prevent these major problems. It might cause relatively minor problems of its own.

If you take Florinef, then you should eat lots of fruits and vegetables, to ensure that you get enough potassium. V-8 juice, orange juice, a banana, or even a baked potato can provide plenty of potassium. You should also probably get a magnesium supplement, but you have to make sure that the magnesium won't interact with any of your other medications. (Ask the pharmacist as well as your doctor). Otherwise, I wouldn't worry about the potassium, unless you are like my neighbor, who has a rare hereditary problem that causes her to lose potassium through her kidneys. But that's rare.

The second concern about Florinef is that your body gets used to it. So if you want to stop taking it, you have to taper the dosage off slowly, to let your adrenal glands adjust. Again, you have to ask the doctor (and preferably also the pharmacist) about this.

The third concern is long-term effects. The main thing I was worried about was bone density, but that is easy to monitor. There is a theoretical possibility that you could have some side effects similar to those of cortisone or prednisone. These include problems with blood sugar and peculiar weight gain (moon face, buffalo hump).

If the doctor refuses to give you Florinef, you might consider licorice. I get licorice teabags from the health food store, and licorice extract. Just make sure that it does have glycyrrhizin in it. The deglycyrhizinated licorice (DGL) won't do any good for POTS.

Another possibility is midodrine.

[MightyMouse]

LT, you said what I was trying to say, but you were more articulate about it... my biggest concern is that off of meds, I WILL faint and I will get hurt, break teeth, get yet another concussion, fall down the stairs, or worse....

Before meds, my first faint that I remember happened when I got my innocculations for grammar school at age 4. They used smelling salts to rouse me--um, I think I just dated myself I'd had more faints, but mostly while I was outdoors playing and roughousing with friends, and I was able to lie down on the grass and recoup. Everyone just figured I didn't do well in the heat, and was otherwise fine. I fainted again in a big public setting at age 10 in my school auditorium, w/o airconditioning, and I'd been standing while reading a poem I'd written to grades k to 6, and all the teachers and parents. As soon as I got off the stage I collapsed into my seat. I woke up again with smelling salts and had somehow been moved to the nurse's office--not sure who carried me there. I had a few more dizzy moments in grammar school, but no faints. I had a few near faints in HS, but that was easier on me b/c we had airconditioning and stayed indoors for gym activities. My fitness level helped too as I was a runner until college. Once I stopped running comptetively, my symptoms all made themselves more apparent. College was a very big struggle just to physically go to class... the exhaustion was profound and overwhelming.

I've fainted in my shower, in my bathtub, in my kitchen while standing and washing dishes (I'd been on birth contoll pills for about a month and the hormone changes made all my symptoms magnified)...and the worst was only a few weeks before I finally got diagnosed (age 32) while mowing the lawn with a gas powered mower. I was very lucky that I was heading down the hill when when I collapsed and the mower rolled away from me down the hill. While the mower automatically stopped the blade when I let go, it's still at least 100 lbs and just seconds earlier I was pushing it uphill in front of me...it would have rolled back onto me. My neighbor found me by chance b/c she was upstairs in her kid's room and saw me unconscious on the grass.

Even on meds, I've gotten into trouble--last year or two ago, I stood up from my livingroom chair and took a dive, back of the head onto the marble coffee table. I split my scalp open and fractured my skull. I can't imagine how many times that scenario would happen off of my medications and high salt, high fluid diet. I truly feel for those here on the forum whose symptoms are unmanaged or poorly managed. I understand their fears, the worries, the frustration--it took many years of trial and error with doctors and medications to get to the point where I am now.

[persephone]

I have a contrasting opinion to most. My grandfather was put on it for postural hypotension and suffered a serious heart attack; his potassion level was half what it should have been. If my mother hadn't taken him to the doctors when she did, he'd have died.

As long as your potassium levels are monitored- whereas my grandfather's weren't- you should be ok.

[MightyMouse]

Actually, according to Dr. Grubb, the way that florinef interacts with your system, you'd need to measure intracellular, not blood level, potassium. By the time you'd test at blood level low K, you'd be in MAJOR trouble. Again, w/ supplementation of K and/or good diet including potassium rich foods, florinef is safe.

nina

[yogini]

I took florinef for a year. I agree that it is not "dangerous" - it is an FDA approved drug that has been used for ages. On the other hand, it isn't exactly one of those drugs that is mild on your system. It has some tough side effects, including headaches, weight gain, high BP and potassium loss. All of my docs kept telling me that they'd prefer me not to be on it in the long run. I am not sure about the long-term ramifications, but I think it was a lot more than just bone loss. I also had a really hard time weaning off of it when the time came. The same doctors seemed a lot less concerned about my being on beta blockers in the long run.

I am a big believer in medically treating POTS. I agree with the others - I would do almost anything within reason to improve my symptoms, and florinef is not an unreasonable option. But I do wish my doctors had thought to try midodrine before florinef. I find it a much easier drug to deal with for increasing BP.

[pat57]

My MD did not want me on it and said it was a steriod. I mentioned this to the EP who said its not a steriod and then some medical talk which I did not understand. So any way, maybe your MD "thinks its a steriod".

[flop]

Hi,

I posted a rather rambling long load of info about different types of steroids and fludrocortisone a few days ago. Try searching for "Florinef and Cushing's" I think the post was titled something like that (sorry too brain fogged to attempt a link).

With all meds you have to weigh the risks aginst the benefits - personally I am on fludrocortisone and my cardiologist i planning on keeping me on it life-long if necessary.

Keep standing,

Flop