Florinef

[s-pot]

Starting Florinef tomorrow, ive been off all meds for about 4 weks now (midodrine/.lexapro) and im really hoping this will suit me cos im crashing hard and fast now! Felt horrendous this evening took my BP and it was 76/48

What exactly should i be doing to give this med the best go...i.e how much salt/water daily? Do i need extra potassium in my diet? (I know i heard/read something about this somewhere i just cant remember!) and anyone who is on it do you get potassium levels checked regularly? im starting on 1mg/day.

Any tips much appreciated!

[abbyw]

Hi S-pot,

Can I ask why you're making the switch?

Thanks,

Abby

[CharmedLinz]

The following is just how I started Florinef after doing a bunch of research because I am highly sensitive to starting drugs.

Do some googling for adrenal information, or a website called stopthethyroidmadness has a good article about the best way to get on Florinef.

I have extreme reactions to small amounts of meds, so it was scary thing for me to start. But my Cousin with POTS had been on it for 10 years and told me how much it helped.

Here is what I did......

Take in the morning not in evening because it will effect sleep.

I did 1/4 tablet every morning for 2 weeks.

Then 1/2 tablet every morning for 10 days.

Then 1/2 tablet in the morning, and 1/4 tablet at 2pm for 10 days.

Then 1/2 tablet in the morning, and a 1/2 tablet at 2 pm for a month.

Docs said 1 tablet daily might be enough, it wasn't, so after that month.........

I did 1 tablet in the morning, and a 1/2 tablet at 2 pm.

I did that for a long time and then tried 2 tablets via Docs orders, it was too much.

Ever since I've been doing the 1 in the AM and 1/2 in early afternoon.

Mainly it helps my Polyuria and Polydipsia and my cold hands and feet.

[CharmedLinz]

Oh and I should add, I couldn't tolerate Midodrine because of the migraine like headaches it induced.

As for potassium, a lot of people have problems keeping it up while on Florinef. I know several people that have to have RX potassium while on Florinef.

I get mine checked whenever other bloodwork is ordered and I have never had a problem with my potassium. Not real sure why, but I've been on Florinef for 3 years, as much as 3 tabs a day at one point (only a week this high) and my potassium is still fine.

In fact a couple weeks ago it's the highest it's ever been at the top of the range.

I do take a 99mg Potassium Asporotate pill daily.

Eat at least 1 banana a day.

Drink Coconut water whenever I feel dehydrated.

And I take magnesium, which if you look it up somehow acts to balance potassium, though the way this happens is a little confusing.

[s-pot]

thanks for all the tips charmedliz!! i never thought i mite havto gradually go up on it i was just gonna start taking the full dose straight away. like yourself thou i dont react too well to alot of meds so ill be mindful of that now you said it!

Abbyw....i could never get up to a high enuf dosage for it to properly manage my tachy/pots symptoms. the migraines were extreme and pressure built in my head hugely after only 2-3 days of taking a small dose 3 times a day. ive bin trying to make it work for over a year now messing about wit dose levels and frequency just cant take anymore than 2.5mg twice a day witout getting side effects that were quite life limiting.

I love the energy it gives me thou! ive had a constant fatigue and slow advancing burnout since i stopped taking it and lexapro!

im hoping the florinef will give me a longer lasting effect without lots of side effects and maybe I could try adding the smaller doses of midodrine in to give me more effect daily in a couple of weeks. Seems midodrine for me was not good enuf as a medication to be solely relying on!!

[s-pot]

also to add...i think i may aswell have been taking smarties as taking the lexapro! I added it in last year (and hated doing so! it took me nearly 5 yrs to get off ssri's fully before) saw no effect POTswise when i started bak on it. I stopped taking it nearly 6 weeks ago and had absolutely no withdrawl effects from it (v v unusual for me!!)

specialist rekons ive burnt out the ssri route for this.....they were treating dysautonomia for me for nearly 10yrs unbeknownst to me!

[songcanary]

I am very sensitive to meds too, and I started out at .1 mg every day for two weeks. The doctor said this will get you hydrated at first and then she reduces to the lowest effective dose. So then I dropped back to .1 mg every other day for one week. Then dropped to 0.05 mg every other day, and that's where I've been for six months. I love this drug; it is really helping me. Best of luck!

[Guest Alex]

Hi s-pot,

my own experience with florinef:

I take 0.1 mg AM and 0.1 mg PM, I drink between 3 and 4 liters of liquids a day, I supplement with as much salt as I can (salty snacks, V8 mixed with salt, chicken/vegetable broth, etc), and I also take 4800 mg potassium supplements a day (as per my dr's recommendation).

I've been taking florinef since February, and I am not 100% sure it helps. I've had periods of spikes in blood pressure when I limited the PM amount to 0.05 mg or even to 0 if my BP was too high, again with my dr's approval.

Everyone reacts differently to meds and sometimes it takes a bit of trial and error to find what works for you.

Best of luck and best of health.

Alex

[Wendy C.]

S-pot, that is interesting that Midodrine gave you a migraine. I really wonder what Florinef will do for your head then... It gave me a daily headache that felt like a moderate head cold or sinus infection, even though I was only taking 1/4 of a pill, so I decided to stop it. I took 1/4 of a Florinef pill for 2 weeks and it did make feel a little bit better, have some minor water retention in my legs for the first time and gain 4 pounds, but I just couldn't stand the new symptom of the daily headache. I tapered down to only 1/8th of a pill for a week and the headache did go away, but I started feeling very fatigued and my pulse pressure (difference between systolic and diastolic numbers) was widened at around 50 or sometimes low, at around 25, with lots of tachycardia. On just the Midodrine, my pulse pressure was always stable and resting heart rate was consistently around 75-80. So, my Cardiologist told me to stop taking the Florinef. I spent about a week taking only tiny slivers of it to ween myself off of it, since I'd read that many folks on here have trouble when stopping Florinef. Now, it has been a week since I stopped it and I do think Songcanary's doctor was right, because I do feel like I am more hydrated than before and I've even been able to add back a small amount of caffeine into my morning cup of decaf coffee and that makes me have a lot more energy throughout the day. It was weird, I actually woke up from a few dreams about me desperately seeking coffee, so my body must've been craving it for some reason and it is helping, so I'm glad I'm 'following my dreams,' haha. My pulse pressure and heart rate have now gone back to stable, as well. Still can't get my BP above 114/72, it is usually at about 98/62 most times.

Regarding your question about how much salt, water and potassium to take, I have no clue. I had the same question before starting Florinef, since I was already salt and fluid loading and taking a 20 meQ prescription potassium supplement. My Cardio didn't even mention anything about increasing any of those, I only learned about it from this Forum and Google, so I just increased salt and water as best I could since I'd already been doing so much. I really hope Florinef helps you! Good luck!

[LMG]

Good luck S-Pot. I just got a call from my endocrinologist who said I also should start florinef tomorrow. My aldosterone was very low and he said the renin levels were undectectable. I felt miserable off the salt for the few days before so maybe that was a clue. However, I have horrid headaches much of the time and i already have low potassium so I am concerned. But will try it.

I usually add about 4g of sodium above my regular diet. May have to increase that.

[s-pot]

UPDATE!!!!

I love this drug...just wish I had gone on it a year ago!!

Its bin about a week since I started it at 0.05 twice a day. Im making sure to drink at least 2litres of water and take as much salt as possible each day. NO headaches, definately feeling more energetic and the daily 'dips' and severe fatigue seems to be lifting. However I not sure I can put this drastic improvement all down to Florinef. I was at Endocrinoloy apt last week and found out I am severely lacking in Vit D also (explains the constant bone aches!) So ive also started on Vit D supplementation.....50,000iu one a week for 6 weeks and then daily doses.

I am really hoping this all continues in this direction! Its bin such a nightmare to find meds that help me and I crash quickly without any meds! Fingers Crossed

LMG did you start on Florinef?? hows it going for you?

[LMG]

I started a 1/4 of a pill a couple of days ago. Nothing bad so far....I was very nervous so am relieved. Very glad you are doing well, S-POT. I send you a pm so we could exchange some info about florinef experience.

The D is interesting too as I tested low.

Was your aldosterone low?

Lauren

[LMG]

I would like to supplement with D. Have bought over the counter in oil based form and don't really like the way I feel. Any form anyone taking that helps? And how long to notice?

[Lemons2lemonade]

I love my florinef and was told by my internal medicine doc that salt helps it work. I take 1/2 tsp of salt a day mixed in 3-4 oz of water-- I found that this works better for me than the salt pills. Also, my potassium runs low. So, I eat a lot of potato skins, avocados, bush black beans, bananas and oj. How florinef works, from what I have read is that it exchanges sodium for potassium and that you urinate out the potassium. So its pretty easy to become deficient When my potassium gets low I start to get weak and disoriented. Additionally, eating extra potassium was not enough. I had to take a potassium supplement. The potassium pills are rough and can be extremely hard to digest. Now, I take the powder form and it has been much more helpful. When I first started florinef, I was getting my potassium checked once a week for the first month. And now I get it checked every 2-3 months. One other thing about florinef is that for me it took awhile to begin working well. It took 3 months to really start helping symptoms.