Florinef Fyi

[ksibert676]

Florinef- ?The Good, Bad, and the Ugly?

I don?t post much and don?t like to write long winded post but I?d like to share my Florinef story. I?ve been on Florinef for over a year now.

-June 2006 thru December 2006:

-June: dx?d with POTS, began 0.1 mg Florinef daily.

-August: tachycardia increased rx?d Nadolol 10 mg q.d. (Heat related?).

-Sept: Florinef related cranial pressure and three anxiety attacks. Rx?d

Lyrica and Midrin for pain, Xanax for anxiety. Increase Nadolol to

10 mg b.i.d. to possibly decrease cranial pressure. Called Dr.

Kevorkian?never returned my call?.LOL

-December: discontinue Florinef due to cranial pressure.

January 2007 thru June 2007:

-January: Discontinued Florinef , BP 68/40 , severe fatigue and weak.

-February: Neuro informed me to ?play around? with Florinef dosage and

give each med change at least 3 weeks to see if the new dosage is

working?and to d/c or add one med at a time.

-Feb, Mar, April, May: On and off Florinef, doses varied from

0.1mg every, every other day, 0.05mg daily, 0.05 every other day.

-June: Severe cranial pressure. Stopped Florinef again.

Yearly update: I felt one of three ways?.

1) Weak, fatigue, low BP, and high pulse. (High pulse, weak legs)

2) Severe cranial pressure. Severe enough to want to die.

3) BP and pulse good, but anxiety attacks. (Adrenaline rushes??)

4) I am a bloated pig from the Florinef. I can skip a dose of Florinef and lose 6 lbs

in one day?.if that gives you an idea of the amount of excess water retention.

July 2007 thru Aug 2007:

-BP dropped again dramatically. Began Florinef?seems to take awhile to get into my system??

June & July was a very rough month.

-August: Started using table salt instead of salt tablets/veggie broth. BP

is higher, pulse ok?..for now.

*NOTE: Pulse may be a bit high but if my bpm?s from supine to standing is under >15-20 bpm I am feeling pretty good. I?m a document freak. BP > 3x?s daily, symptoms such as headache, weakness, fatigue, med times, med changes are all listed daily on a spreadsheet.

I am curious if table salt is absorbing into my system better than salt tablets?

[Kitsakatsa]

I cannot live without my 0.4 mg/day. I thought that it treated adrenal problems. My doct thinks I'm a closet Addisons and he said that sometimes they prescribe 1.0/day. So, really, I didn't think my dose was that high- but are you guys finding it helpful at a lower level?

[becky]

Howdy,

I stopped taking florinef in December (weaned off .3mg daily!) an my blood pressure is a lot lower now (normal!!) and my pulse is lower, has anyone else noticed this? it's not high constanty like it was, which is fabulous - i feel great! (touch wood - start work on wednesday, don't want to jinx it) and i only get headaches once a month.

Wish i'd stopped it ages ago, i know if i get sick again i will not take florinef.

Good luck with it all.

becks x x x

[cardiactec]

i'm on .3mg's of florinef a day. started right off at that dose, didnt slowly titrate up. i was on florinef three years ago at that dose and it made me terribly sick. i have now recently been on it for two weeks and it has done wonders to increase my BP (not too high, but being it to normal) and actually has decreased my heart rate! crazy, but i'll take it. my rates now standing, for two weeks since starting florinef have been more like 110 standing instead of 150 (even on 160mg's of beta blocker)......

i'm not sure how florinef only taken one time every three days or so could stay in your system and help to prevent symptoms............?? i didnt think the half life was THAT long.....i have been told that florinef needs to be taken daily to be therapeutic....anyway, hope you get some relief either way, however you use the med!

[Leigh]

I only take Florinef on days I pass out. If you look at the research on Pyridostigmine (Mestinon) it suggests keeping up Florinef for "breakthroughs" or episodes.

[SunsetParadise49]

i'm not sure how florinef only taken one time every three days or so could stay in your system and help to prevent symptoms............?? i didnt think the half life was THAT long.....i have been told that florinef needs to be taken daily to be therapeutic....anyway, hope you get some relief either way, however you use the med!

I was told the same thing. I was told that it takes weeks like two-four weeks for it to get into your system. And then a good week for it to be out of your system.

I take 0.1mg's twice a day and I find that it helps me a lot. Once in a while there will be a day or two where it feels like it doesn't help, but in most cases it works.

I hope that it continues to help you feel better no matter how you take it, Karen!

[ksibert676]

Bump. Addendum Feb 2. 2007

[DSM3KIDZ]

My doc told me to take it once every 3 days. Haven't tried it yet and am still on.1 a day.

Dayna

[OCsunshine]

I did the exact same thing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was on florinef for over a decade, taking 1/2 pill (.05mg) daily. I wanted to wean off my meds to see if I still needed them, and after a week of being on NO florinef, I felt AWFUL. My headaches increased, my heart rate was all out of whack, I really couldn't function at ALL.

So I got over my pride and went back on the florinef, but now I'm doing 'okay' by taking only 1/2 pill twice a week. I'm happy that my dose is lower, but obviously my body still needs that small amount.

Thanks for this post!!!

[JaneEyre9]

I've been trying to reduce my florinef dose slowly for about the last year or so. The med gave me side effects at "normal doses" (but i've learned I usually need a very small amount of medication compared to most people since i'm so sensitive to chemicals).

I took myself down slowly by cutting pills in half and then alternating days (like 1/2 one day 1/4 the next). After a month or so at a lower dosage, i would try to lower it more (like 1/4 everyday). My side effects went away, and i found a dose that made me feel good. I tried to lower it more, but after a week, i was dizzy with low BP. I tried this a couple times to make sure it wasn't a fluke, and sure enough, my symptoms would increase at the lower dose. I went back up, and for now, i've found my "perfect" dose.

I just want to encourage people who want to see if they still need florinef to wean down slowly because it's more likely to prevent a major crash than just going off of it cold turkey. Anyway-- just my 2 cents. Less is more sometimes!

Kristen

[yogini]

I so agree with JaneEyre. It took me many months to wean off florinef. I reduced by 1/4 pill and then I waited a few weeks before I reduced again. It's normal to feel an increase in symptoms when reducing medicine. Sometimes this is because you actually need the medicine, and other times it's just because your body needs to adjust to the fact you aren't taking the medicine any longer. I have had the same issue with reducing atenolol. The first couple of weeks are really bad, and then things seem to calm down. I've been able to reduce the medicine by just going a lot more slowly than the doctors suggested.

I was on florinef for a year - it was the first med prescribed to me. I was just given midodrine last week, and I have to say that it's a much easier drug to handle. It can be taken as needed and there are fewer side effects. Wish I had tried this before florinef, because weaning off florinef was a nightmare for me - almost as bad as getting POTS in the first place.

[ksibert676]

Thanks for all the input on Florinef dosages. I'm going to re-adjust my dosage. I hope this may help those people who have had bad reactions to Florinef and afraid to try it again. I think I'll try 0.05 mg two-three times weekly.