Florinef Weird Side Effects?

[Claired]

Hello,
I have POTS and I just started taking 0.1 mg Florinef a week ago, and I've been experiencing some weird symptoms.
I have frequent urination, even worse than normal-for-POTS (though this symptom started the day before I began taking Florinef, so it could be caused by something else). It hasn't gotten any better though, and I thought Florinef was supposed to help retain fluids and salt. I'll be normal one minute and the next I'll have to get up suddenly to use the bathroom.
Today and yesterday during and after my walks, I noticed chest pain and my heart was pounding really hard, which is abnormal for me, since my heart and leg muscles are strong enough to go for a 30 minute walk without too much trouble. Today I couldn't finish my walk, and I had to walk really slow, and it felt like I had gone for a jog. Hills were really hard. I've put my feet up now and though my heart is beating much slower, I can still hear the deep pounding in my ears and the pain is still there. It's taken half an hour after my walks to catch my breath both times. I don't have any heart problems - I've been checked by cardiologists before.
I've been drinking plenty/my usual amount of fluids (8-12 glasses) and eating some potassium foods like bananas, potatoes, V8. I haven't been overloading salt bc I didn't want to outbalance my potassium, since I heard that could be dangerous. My doctor didn't give me a potassium supplement.
Am I doing something wrong with this medication?
Thanks.

[SarahA33]

Hi Claire,

I'd think some of those symptoms would need to be run past a doctor. Does the doctor who prescribed the florinef have an hours services where you can talk to a doctor on call? In my opinion, id recommend giving them a call just to see what they say.

Keep us posted!

Sarah

PS.. I hope you feel better!

[Claired]

Yeah. The last time I talked to my dr about Florinef side effects, he denied that there were any (even though I 'm looking at the label right now and they're there). I'm going to take it easy and stop taking it for a few days and see if my symptoms get better - if not then it is a different problem (maybe a UTI infection). I'll update when I find out/if I call a dr/pharmacist.

[Katybug]

I was great on florinef the first time I tried it. Had to go off for reasons not really related to florinef. When I tried it a few months ago, it actually made my heart rate increase badly (basically a paradoxical reaction.) Now we are trying me on it every third day (I take it at bedtime ). I never feel right the day after I take it.

[ks42]

This sounds very much like my experience with Florinef. As soon as I started even a quarter of a 0.1mg pill, I noticed more resting tachycardia (my normal resting HR was 70 at the time, and on Florinef it was sitting over 100 most of the time). As soon as I tapered up to half a pill, I started noticing an increase in urination. It was so severe my docs actually had me measure my urine output - it was around 4 liters a day, when I was only drinking 2 liters of fluids (your urine output is supposed to normally be less than 3 liters, and should be slightly less or equal to what you're taking in - more than that is considered pretty problematic). I was taking in plenty of salt and electrolytes, so that wasn't the problem.

I also had a severe increase in resting tachycardia - I eventually had to be hospitalized for a heart rate of almost 200 while laying down that wouldn't resolve without massive amounts of IV fluids and benzos, and at that point was told to stop Florinef immediately. The heart rate and urination normalized as soon as the Florinef was completely out of my system.

Most of the docs I talked to denied that there were any side effects like that with Florinef, but then I came across a couple articles that stated Florinef actually makes blood vessels more sensitive to the effects of catecholamines like adrenaline and norepinephrine, which I'm pretty sure caused the tachycardia in my case (possibly the excessive urination too, since my urination always increases when my catecholamine levels rise). I mentioned this to a POTS doc who did think my reaction was related to the Florinef (and wasn't all in my head!).

[Claired]

Thank you for responding, Katybug and ks42.

ks42, did you notice lots more blood pooling when you took it? I didn't have any more visible blood pooling than usual, though my veins have been more visible and sore the past week.

I guess I wont' be taking any more Florinef and I was so proud of myself for finally getting up the courage to try it again! I had tried it a year and a half ago but chickened out after a few days of feeling "weird." But now I guess I know for sure!

ks42, how long did it take after stopping Florinef for the symptoms to stop? I haven't taken any since yesterday morning, but today I went for a slooow 20 minute stroll and my chest hurt and pounded again. If it keeps up I'll call my dr next week. I would have skipped the walk but I've been itching to get out and if I stay sedentary I know my POTS will just get worse.

Are there any medications left for me to try? I don't think I can take midodrine, and my dr didn't want to do beta blockers with me bc I'm fairly young and my heart is otherwise fine. I wish there was something more I could do to get better! I can't pull the compression stockings on anymore (I tried and failed again today lol), I do all the little "lifestyle adjustments." I just feel like I'm not trying hard enough. But then when I try harder, I get an episode. Will I ever get passed the 10-15 min. standing and 30-minute walk plateau? (I'm very grateful, believe me, I know how being bedridden feels.) I've been at this level for like a year and a half.

[ks42]

I don't remember if I noticed more blood pooling than usual, but I was having a lot of blood pooling at the time in general, since it was summer in Arizona and super hot.

Most of it should be out of your system within 17 hours of your last dose, but I think technically it can linger in your system for more than 72 hours. I felt a little better 24 hours after stopping my Florinef, but that's also probably because I was given drugs in the ER to counteract some of its effects. It took me I think more than 48 hours (might have been 3 or 4 days even) to feel completely back to normal.

I'm not sure what all you've tried in terms of medication, but there are quite a few meds available to POTS patients other than Florinef and beta blockers. A lot of POTS docs prescribe beta blockers to patients who are young and don't have heart issues, but there might be something about your case in particular that makes your doctor reluctant. I've improved on Klonopin (for a hyperactive sympathetic nervous system), a lot of salt and fluid, and IV fluids when needed. I think someone else on the forum posted this article for me, so I'll repost it here for you - it has a great table of treatment options for POTS: http://circ.ahajournals.org/content/117/21/2814.full

[ramakentesh]

For me i had a week of jitteriness then vast improvememt

[Singout]

I've definitely experienced sudden urgent needs to urinate with Florinef (or maybe the midodrine? I think the florinef )--it was worse when I first started taking it...just being hit by it suddenly. That's pretty much gone away, although it recurs from time to time. Embarrassing doing the "I have to go pee" thing when my parents are driving me to the cottage!