Florinef strange side effects

[katyroq]

I read these forums regularly for information, but I can't find much on my particular response to Florinef, particularly a cough that I get. I also think that I am very sensitive to sub-clinical drops in potassium levels.  Anyone else relate?

I have had POTS for the past 3 years. The first doctor diagnosed it very quickly but said there was nothing that could be done. About 4 months ago, I started seeing a new Dr. who put me on salt and fluid loading, and rowing for exercise. That hasn't helped at all, so now I'm trying fludrocortisone.

6 weeks ago, I was prescribed 0.2 mg/day (split morning and night), but I started with half the dose after reading on here to start slowly. The first 2 days I got a strange cough, felt wired and got a TON done on very little sleep. I could not feel hunger or tiredness, but overall felt okay and went about my life. The third day was awful. Jittery like I'd had way too much caffeine, tightness in chest (couldn't take a deep breath), anxiety, pounding heart, tachycardia episodes when lying down, trembling, diarrhea, constant dry cough which led to more discomfort, pressure in upper chest/neck, and couldn't lie down due to the pressure in my head. The Dr had me go off of it for 2 days, and all the symptoms went away.

She started me again on 0.05 mg at bedtime only, which I took for 3 days, then upped it to 0.1 mg. Aside from some trouble sleeping and adrenaline rush feelings that went away after a few days, I didn't have many initial symptoms. I have the cough, and I feel slightly caffeinated at all times. I haven't read anything about a "stimulant" effect of florinef, but that is the most noticeable constant effect to me. I'm not complaining though. After a couple weeks I noticed that my heart rate was considerably higher than normal.  Walking across my college campus it's usually 100-120 bpm, but on florinef it's now 130-170s. Sometimes sitting in class it will shoot up to the 100s which is abnormally high. I haven't been able to push as hard with my rowing exercise either. Despite the high HR, I have been feeling quite good. I wake up with a rush of energy (which is awesome! even though it causes a hot flash), and overall have much more energy and stamina throughout the day. So I think it is helping. Or maybe that caffeine-like side effect is helping, haha.

One day after about 3 weeks of taking it, the cough got much more frequent, and the next day it was worse, my HR was higher, and the next day I started getting the bad symptoms similar to how I felt when I first started it (chest pressure, pounding heart, extremely jittery and anxious).  I was surprised as I seemed to be adjusting to the medication quite nicely.  Then I realized that I had been feeling so good for the last several days that I had stopped paying attention to eating salt/potassium/water and had also worked really long hours without a lot of sleep. So I rested for a day and ate a lot of potassium rich foods. Within a day I felt better and the cough was back down to a lesser frequency. 

So I think I was running low on potassium (which I know can be a side effect of florinef), and somehow the cough correlates to that. Perhaps its due to increased palpitations with low potassium? That's the only thing that makes sense to me (although I didn't have any typical muscle weakness or cramping caused by low potassium). Also, if I understand correctly, such heart-related effects of low potassium are fairly serious and result from dangerously low potassium levels. In that case I doubt that eating bananas and drinking coconut water could adequately help. Also, this most recent bout of bad cough and symptoms happened just a few days before my regularly scheduled cardiologist appointment. She tested my blood sodium and potassium levels and they were normal (but I was also feeling better by then). So I'm thinking I am just extremely sensitive to small changes in potassium or sodium/potassium/water balance.

Does this experience on Florinef resonate with anyone here? I really am at a loss to understand this because there is so much information on fludrocortisone out there, but none of it matches my experience. I haven't had any of the normal side effects (no weight gain, swelling, BP increase, headaches) but I am clearly experiencing some effects from the drug.  My doctor is not concerned about these side effects and I am not really either (aside from an upcoming trip where I'm wondering how in the world I can get enough potassium-rich foods while traveling). I am just wondering if anyone has a similar experience or can help me explain why these side effects would occur.

 

[Jan]

Florinef is similar to a steroid that is naturally released in the body in the morning  and it is usually recommended that it be taken in the AM and not at night because it has a tendency to disrupt sleep. 

I take .2 mg each morning.  When trying to find the right dose, at one time I took .3 mg and felt worse.  You may just need to keep adjusting your dosage until you find the right dose for you. 

I take it to raise my BP which in turn lowers my heart rate.   I am surprised it raised your heart rate. 

 

[katyroq]

Thanks for your response, Jan. I actually tried taking florinef in the morning once and had more trouble sleeping that night. When I take it at night, I take it right before falling asleep and then I seem to sleep through the worst of the jittery feelings.  I actually have slept really well since starting it. I read that aldosterone peaks at 3am so maybe taking it around midnight isn't that far off. 

I definitely want to try to play with the dose a little but I'm not sure whether to go up or down first. My blood pressure hasn't gone up at all in the past 4 months of high salt /water diet and the last 1 month of florinef so I'm tempted to go up, but I don't want to worsen the side effects. 

[bombsh3ll]

As well as retaining salt and water, florinef also potentiates the effect of noradrenaline in the body. For some people this can be beneficial as it constricts their blood vessels, but when I have tried it these effects have been a problem for me too. I end up even more vasoconstricted, non-psychogenically anxious and jittery than usual and my HR does not go down. My BP goes up, but my BP is normal to start off with so I don't necessarily want that. All I want is more blood flow to my brain to not be presyncopal all the time. I also got terrible palpitations on it too, which is a symptom of low potassium. You need to make sure you are having regular blood tests for electrolytes at least in the first few weeks on it. When it was prescribed for me I wasn't offered any follow up or blood tests, which is frankly dangerous. 

I may reconsider it again after I am able to get a blood volume test.

[katyroq]

Bombsh3ll, that's very interesting about florinef potentiating effects of noradrenaline. It makes a lot of sense with my experience. Thankfully for me things have settled down after almost 2 months on florinef. My heart rate is still somewhat higher but the positive effects far outweigh any negatives from that. How long have you taken florinef in the past? 

I agree that it's dangerous to not monitor potassium. My Dr didn't say anything to me about it, but tested mine when I asked after 6 weeks on florinef.  It was 3.7 when in the past my potassium has always been 4.5. So clearly it's lower than normal which could cause some symptoms even if it's not clinically too low.  Interestingly I have been traveling for the last 2 weeks and haven't been too careful about eating tons of potassium, and I haven't had any episodes like what I thought were low potassium. So who knows. I think it's just taking a very long time for my body to adjust to this drug.