Florinef....what Is It Supposed To Do?

[louloutinks]

I have been taking florinef for just under two weeks now. If anything I have felt more symptomatic on it.

I have excruciating headaches (I also have chiari and its made headaches worse). I have nausea, numbness in calves and feet. My BP keeps spiking high. My heart feels like it is pounding harder throughout the day. My heart rate is still going sky high upon standing. I am more symptomatic all day rather than just the mornings and evenings as I was before taking florinef (apart from when I was having bad pots episodes that lasted all day). I am still get very narrow pulse pressures.

How is florinef supposed to make me feel - what 'should' the benefits of taking it be, as so far I see no benefits?

[brethor9]

hi Tinks I am sorry to hear the florinef is giving you a rough go of things it is one of those medications that works really well for some and not at all for others. I go back and forth with it.....it helps but the side effects can sometimes be just as bad. Florinef is mainly given to help expand blood volume by helping you to retain more fluid and salt in your body and thereby increasing blood circulation and blood pressure (because you have higher volume)....all the side effects you are having sounds like your dose may be too high to start....how much are you taking? Also, with having Chiari which already applies abnormal pressure to the base of the spinal cord perhaps it is causing too much of an increase in fluids in your body now???

p.s hope your little guy is making out ok

Bren

[Guest Alex]

Hi Tinks,

like Bren said, florinef is supposed to expand your blood volume by helping you retain more fluid and salt (sodium). The increased blood volume should boost your blood pressure and reduce tachycardia.

Some find florinef to be their best friend others (myself included) have a hard time tolerating it. While on florinef my pulse pressure was actually narrower than it is now that I'm off it, my headaches were pretty bad, I had numerous BP spikes (I ended up going to the ER several times). Not to mention the weight gain, the face puffiness, the swollen fingers and feet etc.

While on florinef you might want to keep an eye on your potassium and magnesium levels (periodic blood tests are recommended) and eventually consider supplementing (I learned it the hard way - my dr never warned me of this), but obviously not without consulting with your dr.

Best of luck and keep us posted,

Alex

[YolaInBlue]

It is possible that Florinef is not the best medication for you, but my start with it was also rough. I had horrible headaches and blood pressure spikes, and was still tachy with occasional episodes. In fact, my blood pressure was all over the place the first month on it. I was told by my doctor to decrease dose to half a pill (I was on 0.1mg) and increase back slowly. I went to 3/4 pill and a month into treatment everything finally stabilized. I'm staying on 3/4 still (0.075mg) after 9 months. It helped me a lot in the long run. I have whole days now without symptoms, as long as I avoid triggers, like heat. I can exercise on recumbent bike for 40 minutes a day and take 1 hour walks. I was bedridden for over 3 months, so this is a huge improvement for me. My other doctor added 2 more medications in January, but Florinef was the first big step.

I was told that Florinef is one of those meds that you need time to see if they work for you. I was also told at that time, that there is nothing else they can prescribe for me, so I felt like I had no choice but to give it time. First month was horrible though.

On the other hand, there are many people here for whom Florinef didn't work at all.

[BadBadBear]

Tinks, how much did they prescribe for you, and did you start on the lowest dose and then move up?

For me, Florinef did not make my blood pressure change but it did decrease the amount of pre-syncope I was having. It did not affect my pulse pressure, which is somewhat narrow at about 20 sometimes. From what I've read, it affects people quite differently... I found that if I took my prescribed dose (.2 mg) I have splitting headaches, and I don't feel any better than I do on .05 mg. After working my way up to 2 mg. of it, I eventually worked back down to .05 mg and have stayed there.

It also seriously depleted my potassium at higher doses - at .05 mg, I need about 10 MEQ supplemental potassium a day which gets me to about 5,000 mg daily intake of potassium. I really lose potassium badly at the higher dose, and my docs didn't watch it closely enough... I was needing something like 40 MEQ potassium a day if I take a .2 mg dose. For whatever reason, it really hammers me.

[looneymom]

Everything that has been stated in the above posts is true. My son has been on it for over a year and has really not made a lot of progress on his POTS medication. Currently, I am in the process of weaning him off of it and his blood pressures are staying up. For some people this medication really works well for them. For my son, the doctor thinks he might have outgrown the use of this medication. Be sure to have your your potassium levels checked. Hope this medication helps you and provides relief from some of your POTS symptoms.

[louloutinks]

Hi all.

I was started on 0.5 per night for 2 days then 0.5 3 times a day thereafter so on 1.5mcgs now. My pulse pressures are narrow to but my diastolic seems to be going higher. This morning my bp was 110/104 with fast heart rate. I seem to be more symptomatic all day rather than mornings/evenings. Its like I am having a potsy flare. I am still having silly high heart rates up to 170 or so. I feel more breathless too - everything is such an effort

I spoke to my gp about the numbness, and he said it causes mineral deficiencies and that was all, so I bought myself a pottasium supplement but as I have swallowing problems because of the chiari I cannot swallow them as they are SO big lol - waste of money there then!!

The florinef is not helping with my morning pre-syncope at all - in fact I feel worse. I even had to sit down to prepare my sons packed lunch this morning.

I just hope they start working soon and this is my body adjusting??

Bren...little man is cool - he has a day out at the pleasure rides park today - he is a thrill seeker! How have you been keeping yourself Bren - I dont often come on here any more x

[Guest Alex]

Tinks,

I had the same issue with the high diastolic pressure (and not only) while on florinef. And yes, your dr is correct, you can definitely have mineral deficiencies from it - particularly potassium and magnesium.

Now, please don't think I'm trying to give you advice on what to do, but since you seem to have such a hard time tolerating the florinef, maybe you should talk to your dr about it and start looking for alternatives. Not sure if licorice may be a good substitute in your case as I have never tried it so I can't really tell you much about it. If you search the forum though, I posted a very detailed paper on licorice and its potential benefits a while back (I can't find it right now). As I said, see if that's an alternative worth exploring.

Alex

[BadBadBear]

Tinks, two things spring to mind from your post.

1. That is an awfully fast ramping up on the Florinef, are they checking your bloodwork frequently to see how much potassium you need?? They ramped mine up fast like that and I had nothing but trouble for a few months, I had horrid headaches, and then had a heck of a time trying to regulate my potassium (which the doctor allowed to crash). It felt awful. I started mine in early April and am just now stabilizing finally. Is there some reason they didn't let you use the minimum dose for 2-4 weeks to stabilize, and then titrate up carefully?

I actually have cut my dose back from .2 as prescribed to .05 and that seems to be a good dose for me AND I can maintain a good potassium level and feel better. It did take a while for me to tell that it helped the pre-syncope - I would say it took at least a month to really tell.

2. If you are taking an OTC potassium supplement, you may need a large number of tablets to get enough potassium. Hopefully they are checking your bloodwork? You need around 7 of the 99mg tabs to equal 10 MEQ. So for ex. when I was on .15 mg, I was losing ~40 MEQ a day - that would have been 28 of the 99mg tabs a day of potassium! It is ridiculous.

3. If you need an easy to swallow potassium, lite salt or potassium bicarb might be a good option to investigate. It's easy to mix into drinks, and at least the potassium bicarb doesn't have much if any flavor...

Please don't let them tell you that you don't need bloodwork. Stand up for yourself and make sure they take care of you. That's a high dose of Florinef to be on OTC potassium, esp. if you can't swallow the tablets!

Best of luck geting this all titrated correctly, and hopefully it will be a BIG help when you do!

- Michelle

[louloutinks]

Hi michelle,

i have no one checking my bloods - I am in the uk - but was told i will be contacted after a month to see how. Each tablet is 100 micrograms and i take half three times a day. Is that a lot then?

I have been getting very low pulse pressures and my BP this morning was 82/81 and have felt pretty ill all day and feels like my heart is missing beats. I still see no benefits from this drug but have been more symptomatic on it .

I have given up taking all the vitamins lol but shall have to wait and see what the hospital say in the phone call next week.

[brethor9]

Hey Tinks

I am doing okay.....as best as I can I guess..... lying low and tired out lately from all the specialists appts .. ....will try to send you a PM later

Just one thing springs to mind? Are you taking any Florinef in the morning before you get up? That was how I was instructed by my auto specialist to take it as apparently that is when your body needs it the most?

I agree with others; you should be starting on smallest dose possible and titrating.....talk to your doc even about dosing every other day....that is the schedule I am on now and maybe the side effects will settle down

I also wonder if maybe your Chiari and Florinef just are not a good mix together......have you tried Mestinon or Midodrine??

Hugs

Bren

P.S. glad your little guy is doing well...... they keep us busy don't they? lol

[Lemons2lemonade]

It took about a month for my florinef to start working and when i began it things were really bad, but i changed up to it because things were getting bad in the first place. So not clear exactly what the cause was. It does make me more breathless, but i am more functional on it. But like others said, perhaps it is not the right one for you.

[TCP]

I hope you improve, Tinks and find a good outcome for you.

I feel like we are having to self-diagnose and monitor our health, which is wrong. I've not been offered Florinef (in UK, too) and am on beta-blocker at low dose. I know a lot of people seem to be on florinef.

Not doing very well at the moment, so wonder if something else would be better for me. I'm currently on gabapentin and duloxetine plus the propranolol. I've been given very little help and advice even though I am very disabled using a stick and needing support 24/7.

I'm at a loss to know what to ask for. I saw a cardio and he was useless...my tests showed tachycardia and he didn't want to help even though I have postural changes to BP/low BP, breathing problems etc. He said he didn't know anything about the nervous system and put it all down to anxiety hence the propranolol. Rubbish!