For Those On Florinef... A Question

[stellaluna]

After three months on .1 Florinef once per day ... I went back to EP.

Some relief possibly though hard to say if it is Florinef or other modifications/ changes. I HAD been taking Florinef in PM and had noticed considerable improvement in my insomnia (ability to stay asleep and fall asleep due to less racing/ tachy). I have been also able to see this data also on a wrist and chest strap HR monitor.

EP did not seem to think this could be the Florinef making this change in nighttime HR. He suggested swiching to AM dose of Florinef to help with day symptoms.

I am on day one of AM dosing and huge headache. (though I am a migraine person, perhaps just coincidence) I 'm hoping better in a few days.

Anyone who is only only 1 daily dose have experience with difference of AM/ PM dosing or notice change?

[Jan]

Florinef is a hormone that the body normally releases in the AM so it is recommended to take it then as it can wake you up and makes sleep difficult for many people. You are obviously an exception to this rule.

I am on .1 mg 2x a day.

When I used to get up in the early AM to get my kids ready for school, I took one then, went back to bed and then took the second dose when I got up for the day. That worked fine.

Now I just take both pills 3 or 4 hours before I get up for the day. This seems to work even better for me. (I get up to pee at night so I am up anyway. I also take them with a glass of milk because it bothered my stomach.) It seems to be long lasting enough for me to last all day and by taking it before I get up I find that I feel better when I do get up. If I take them too close to the time I actually get out of bed, or after I get up, I don't feel very well all day.

[DizzyGirls]

My daughter is on Florinef and her doctor just split up her dose (0.1 at breakfast, 0.1 at dinner) to see if it was causing her splitting headaches. Don't think it's helping yet. But, I'm curious, she has such a hard time getting up in the morning. Can't get up too early or move too fast otherwise she will get lightheaded, tachycardic, and it causes her vertigo to get worse. I've wondered if she took her dose before she was planning on getting up, would it help these symptoms? I think during the night when her blood isn't pumping like during the day, so it takes the blood a long time to get to her head to prevent these symptoms. It's interesting, though, stellaluna, that it helped you sleep. My daughter gets really tachy at night too.

[Jan]

Dizzygirls, all I can say is it really helps me to take it a few hours before I get up for the day. I have tried to take it after getting up for the day and usually have a terrible day. I have a really difficult time in the morning, so if I have to go somewhere in the morning, I take the Florinef even earlier than normal. I usually sleep until very late morning. It can't hurt to try taking it before she gets up.

[DizzyGirls]

Thanks, Jan, we'll try that!

[stellaluna]

Thanks for replies.  For me, the Florinef seems to be slightly raising BP and lowering heart rate. (this had seemed to be a good thing for my body and racy heart in helping me calm and sleep).  However, I am also earnestly adding salt and keeping up with water so hard to say if it is def. Florinef, a change in my dysautonmia cycle or something else affecting symptoms.  Anyway...

Unfortunately, now that I have switched my once daily dose from evening to AM, my sleep this week is a wreck again.  Daily symptoms are not relieved as much as I would like with AM Florinef.  Doctor and I are not wanting to go to two doses ( am and pm) of Florinef.... I will give it a bit longer and see how things go.

[yogini]

It's a steroid, so it stays in your system -- actually for up to a couple of weeks.  It shouldn't make too much difference whether you take it in the day or night.  Florinef increases BP, so it actually can help you sleep better and reduce nighttime tachy - if low BP was causing your insomnia.  (Low BP is a common reason for insomnia for us.) 

On the headaches, I would measure your BP to make sure it hasn't gotten too high.   

[yogini]

BTW, florinef helps you retain sodium.  So if you are getting headaches it might be the combination of the salt and the florinef.  You may need less florinef or lest salt. Be sure to coordinate carefully with the doctor on this.

[stellaluna]

While I know each POTs/ Dys. patient can have diff issues and react differently to medications, etc...  this has really got me thinking.  The dr. recommending switching to AM dose is an EP found here on Dinet.   I trust him more than other doctors thus far for dysautonomia-related knowledge but even he says "this is difficult to treat".  A bit depressing.

 

Yes thanks for mentioning concern:  I am having less headaches now.  

I am being monitored for BP in office occasionally and at home (edit::with a home BP monitor and often continuously with an HR wrist/ chest strap) and salt is dr. coordinated.

 

Since the Florinef, my BP is only slightly higher (in normal range and not the "wow you are low" I used to get pre-diagnosis) and my heart rate is lower often (often not the crazy highs) though occasionally still the erratic orthostatic jumps 

So, concerning the change of timing of Florinef, I looked up the half-life.  Even though it does build up in the system, here is the half-life:   

The approximate plasma half-life of fludrocortisone (fluorohydrocortisone) is 3.5 hours or more and the biological half-life is 18 to 36 hours.

 

I suppose that makes sense why my card. EP is saying I should try AM for awhile. It sounds like perhaps the big effect could be the first chunk of the 24 hours I take it. Still not sure it will "work" for me.  I hope I don't need to try 2 doses .. or if I do... hope it is helpful and not more harmful as some people experience.  Here's to hope.  

[Jan]

What is the difference between a plasma half life and a biological half life?  

[Katybug]

I think it's the difference between being in the blood vs being found in other body tissues.

[yogini]

I think there are some drugs - like beta blockers that are stronger in your system when you take them.  For florinef it is slow acting.   So when you start taking it is about 2 weeks (or even longer) before it starts working.  I don't think it's just the half life but the way the drug works in your system.  It makes the body retain sodium, which makes you retain water.  It takes time for the sodium to build up.  Even if you stop taking it, it takes time for the sodium to wash out of your system. Thus the time of day does not make as much of a difference as you might think.  This is true to my experience and what the doctor told me, though your doctor might tell you something different for you

I and others have found it very useful to buy a home BP monitor and measure a few times in the day - especially when I was trying to figure out my symptoms and POTS treatment.