All About Florinef : Seeking Your Infinite Wisdom

[AllAboutPeace]

I really hope that poll makes sense...I was feeling like this when I was typing it. lol

My doc thinks it's time for me to start a med. I haven't done any meds for Pots to date (9 months after onset) and none of us are happy with the lack of improvement in symptoms; exercise has been a struggle, etc, etc...so it's time...

So, I went back through the forum and read lots of previous posts about peoples' experiences, but I still have a few concerns and questions.

1. Should your aldosterone/renin levels be checked prior to starting Florinef or does it really matter? Would this give an indication if this will help you or do the docs just 'assume' our current levels are off?

2. I have concerns about the possibility of being dependent on this med for life (if the adrenals don't kick back in). If I do have a temporary condition (which is what people still say at this point - would I really want to do something that will make a permanent change to my body??). I guess the answer would be 'yes' if I was able to be a participant in life again. Any thoughts?

3. My doc wants me to start on .1mg, but I've noticed that others have started on smaller doses and worked their way to the right dose. I was curious about the every second day dosage and wondering if that would make it easier for your adrenals to pick back up again when it came time to stop ??

4. Does everyone have regular bloodwork done to check potassium levels?

5. I read that you have to let any docs or dentists know before you have surgery or emergency treatment if you are on this med because it is a corticosteroid (and using it for a long time can make it difficult for your body to respond to physical stress). Does anyone have any info about that or know what exactly that means?

I'd appreciate any wisdom you have to share.. Thanks!.

[Birdlady]

I have primary adrenal insufficiency, so I *have* to take it. But for POTS it has done absolutely nothing for me. Not even a little bit... I have HyperPOTS without the high BP, so perhaps that's why this did nothing for me. I have been on varying doses and even had both of my TTTs done while on it without any positive effects. I started out low and worked my way up to 0.2mg, but at that level I could not keep my potassium levels stable. I would get severe chest pains from it and that's how I'd know I was low in potassium, but I did have my blood work checked fairly often.

Now though when I take it, I only take 0.05mg, just because of the adrenal problems.

One mistake in your post is that florinef is not a corticosteroid. It is a mineralocorticoid which is much diferent. I hope this info helps.

[brethor9]

yeah I have a love hate relationship with this drug......I hate the side effects but when I try to go off of it (which is incredibly difficult) about a week later I crash...so for now I have to keep taking it but its just kind of meh for me. Still looking for something else that might have some better results with all the other dysauto symptoms.

Bren

[McBlonde]

It would be a good idea to have your aldosterone/renin levels checked prior to starting Florinef, because once on it, you get false low levels of aldosterone/renin. However, so many labs/offices don't do the test right. It's really amazing. Your supposed to lie in a quiet room and have your first draw and then have a second draw when standing. The sample has to be put on ice immediately and processed by specific criteria.

I took Florinef .1mg since 2003. When I started having High Blood Pressure and edema in my left leg a few weeks ago. I just stopped it. I can't tell a difference taking it or not taking it. The only thing is that I have stopped peeing so much since I stopped, but that doesn't make any sense to me (regarding the Florinef)

[HyperPOTS8]

1/ not sure why it would help to have your aldosterone level checked. Mine was actually high due to severe hypovolemia (determined by blood volume analysis) which is probably why Florinef helps me so much. Others have low aldosterone, however.

2/ you won't become dependent on it for life!

3/ I started at 0.1 mg daily but never hurts to start low and go slow

4/ absolutely, you should ge your potassium checked regularly. More often in the beginning, say q1-2 wks, then once you determine our long term dosing say q 3 months. You should start KCl with the Florinef or you will end up getting total body KCl depletion (according to Dr. Peter Rowe at Hopkins). You should also check periodic magnesium (but not as ofen as K)

5/ Florinef does have corticosteroid activity, but the amount is minimal at doses of Florinef <0.4 mg daily.

I could tell a significant improvement from Florinef in 24 hrs. I don't have any side effects.

[PetuniasMom]

My daughter takes .1mg of Florinef a day. After 3 days, she had improvement. After 1 month she said she would never, ever give up this medication. She has been taking it for a year now. Her doctor told her in May that if she had to double her dose to make it through the summer, she could....but she didn't have to. The effects of the blood volume expansion from the florinef - took her dizzy and lightheadedness away, took her headache down to a normal 'headache' level and eventually a mild level, more blood available to digest her food helped with tummy pain and nausea, aaand the other part of digestion too.

She took hers with a meal, usually suppertime until about 3 months ago. It did have some side effects for her and she just prefered to take it at that time of day, because she felt so yucky in the morning anyways. She now takes it in the morning, as she is well enough to eat breakfast - yeah!!

We don't test for potassium levels, but we make sure she eats lots of strawberries, bananas, and sunflower seeds.

[Lemons2lemonade]

I wonder what the correlation is between the dosage and the helpfulness, it didn't work for me until I went up to .2

[Relax86]

I tried it for just a few days in the very beginning stage of my flare. My head was spinning with fear and symptoms at the time. I ended up getting good relief from HC but after all the info I gained from this forum I believe the florinef would have worked had I given it a better try. Once I started to recover with HC I was afraid to try anything different. I also started midodrine which worked fantastic when my BP's were low but one day - out of POTs nowhere - my BP regulated itself to close to normal so I stopped taking it. My plan is to hopefully avoid a relapse but if it happens I would give florinef a real try and stay off the HC.

[Hoshistorm]

I started taking it about 1 week ago. I have seen a difference, it has helped me. However, I am also dealing with processing trauma at the moment. I had an apt. with my therapist on Friday, which led to digging up a lot of stuff. I was bawling in her office. Then I talked to two good friends = bawling again. Lastly, I talked to my mom for 2 1/2 hours on the phone = really really bawling for almost the entire time 9 though it really helped to get it all out and let her know how her actions/lack of actions have hurt me). Needless to say, yesterday I was really achy and exhausted! OMG it was terrible! I felt almost as bad as when I took the TTT! So, it is hard to say at the moment how well the florinef is working, because I also have major trauma to deal with.

[Guest Alex]

Glad to hear you're seeing benefits from it already.

In my case... I guess it helps me maintain a decent BP as I'm taking propranolol as well, and beta-blockers tend to really play a number on my BP - even at very low doses.

I'm supplementing the florinef with potassium otherwise I think I'd be in trouble (even with 4.8 g potassium chloride a day my potassium is borderline low).

[AllAboutPeace]

One mistake in your post is that florinef is not a corticosteroid. It is a mineralocorticoid which is much diferent. I hope this info helps.

Thanks, Dana! I looked this up again and I'm finding it listed sometimes as a mineralocorticoid and sometimes as a corticosteroid (i.e. Mayo has it listed as this and my sheet from the pharmacist) and sometimes mineralocorticoids are listed as a type of corticosteroid. ??

[Guest Alex]

One mistake in your post is that florinef is not a corticosteroid. It is a mineralocorticoid which is much diferent. I hope this info helps.

Thanks, Dana! I looked this up again and I'm finding it listed sometimes as a mineralocorticoid and sometimes as a corticosteroid (i.e. Mayo has it listed as this and my sheet from the pharmacist) and sometimes mineralocorticoids are listed as a type of corticosteroid. ??

if I may - corticosteroids = hormones produced in the cortex of the adrenal glands (cortico - cortex). There are 2 types of corticosteroids: glucocorticoids (such ad cortisone, prednisone, hydrocortisone, methylprednisolone etc) and mineralocorticoids (like aldosterone - florinef is the man made version of this). So florinef is a mineralocorticoid, but at the same time falls into the larger category of corticosteroids.

The "bad" steroids - those banned for athletes are the glucocorticoids. Mineralocorticoids help retain water and promote sodium retention by the kidney - thus helping those with low blood volume.

My dr suggested periodic blood-work for potassium levels, plus supplemental potassium (see my previous post). I've readthat calcium and magnesium should be also monitored while on florinef as it tends to deplete your body of these 3 essential minerals.

In terms of letting drs know about your florinef intake - that is necessary so that they adjust (increase usually) the amount in case of major (even minor) surgery as the body is exposed to extra stress, thus producing less aldosterone naturally.

Hope this helps

Alex

[brethor9]

Alex

curious? is that increase only relatable to surgery or any type of overly stressful condition? I am just thinking that there are times when I am having more stress than others (ie illness, moving, emergencies?) and wonder if increasing florinef would help offset the increase in symptoms during these times?

Bren

[AllAboutPeace]

Thanks everyone for all of the great info, tips and experiences!

Bren: I love that "meh" is a word - it's a small little word, but the meaning is completely understood.

McBlonde: So, you just stopped taking it...no tapering or anything after that many years on it? Wow that's amazing (and good) that you had no ill effects from stopping it - I wonder why?

HyperPOTS8: thanks for the tips on potassium and bloodwork. My local doc isn't big on follow-up. He quickly wrote me the Rx at the last appointment and told me to start after my next test. When I called to say the test was done and I was starting, he told the receptionist to tell me to go ahead - no mention of bloodwork or even a next appointment - ever. I told her that I needed bloodwork in two weeks, so she said she'd write him a note so he can arrange it...argh! My potassium was found to be low at the time of my initial double syncope/onset of Pots, so I'm a little curious/sensitive about that.

Hoshistorm: sorry that you are having a hard time right now I hope all of the tears are marking the beginning of healing for you.

I started my first dose of Florinef (.1mg) today.

[AllAboutPeace]

if I may - corticosteroids = hormones produced in the cortex of the adrenal glands (cortico - cortex). There are 2 types of corticosteroids: glucocorticoids (such ad cortisone, prednisone, hydrocortisone, methylprednisolone etc) and mineralocorticoids (like aldosterone - florinef is the man made version of this). So florinef is a mineralocorticoid, but at the same time falls into the larger category of corticosteroids. The "bad" steroids - those banned for athletes are the glucocorticoids. Mineralocorticoids help retain water and promote sodium retention by the kidney - thus helping those with low blood volume. My dr suggested periodic blood-work for potassium levels, plus supplemental potassium (see my previous post). I've readthat calcium and magnesium should be also monitored while on florinef as it tends to deplete your body of these 3 essential minerals. In terms of letting drs know about your florinef intake - that is necessary so that they adjust (increase usually) the amount in case of major (even minor) surgery as the body is exposed to extra stress, thus producing less aldosterone naturally. Hope this helps Alex

Very helpful...thanks Alex

[brethor9]

good luck with the florinef, Peace I hope it gives you some symptom relief......

Bren

[Guest Alex]

Alex

curious? is that increase only relatable to surgery or any type of overly stressful condition? I am just thinking that there are times when I am having more stress than others (ie illness, moving, emergencies?) and wonder if increasing florinef would help offset the increase in symptoms during these times?

Bren

Bren,

I believe it applies to all types of stressful conditions. I wouldn't increase it though without checking with a dr/specialist.

The way I understand this is that our body produces aldosterone normally and adjusts the amount based on what we're going through (stressful conditions for ex). When we start taking florinef, that inhibits the natural production of aldosterone. That means that we don't get the same "help" from our hormones like someone who doesn't take florinef, as their body regulates the aldosterone production properly. Most of us are not taking florinef because our body doesn't make enough (that would be for the people with adrenal insufficiency) but to help retain water and sodium. So our body stops making (or makes less) aldosterone because we're providing it.

Am I making sense?

Alex

[Guest Alex]

if I may - corticosteroids = hormones produced in the cortex of the adrenal glands (cortico - cortex). There are 2 types of corticosteroids: glucocorticoids (such ad cortisone, prednisone, hydrocortisone, methylprednisolone etc) and mineralocorticoids (like aldosterone - florinef is the man made version of this). So florinef is a mineralocorticoid, but at the same time falls into the larger category of corticosteroids. The "bad" steroids - those banned for athletes are the glucocorticoids. Mineralocorticoids help retain water and promote sodium retention by the kidney - thus helping those with low blood volume. My dr suggested periodic blood-work for potassium levels, plus supplemental potassium (see my previous post). I've readthat calcium and magnesium should be also monitored while on florinef as it tends to deplete your body of these 3 essential minerals. In terms of letting drs know about your florinef intake - that is necessary so that they adjust (increase usually) the amount in case of major (even minor) surgery as the body is exposed to extra stress, thus producing less aldosterone naturally. Hope this helps Alex

Very helpful...thanks Alex

Don't mention it.

Hopefully you'll see some improvement with florinef.

Keeping my fingers crossed for you.

[Ashelton80]

I took a tiny dose of it last night before bedtime. I felt fine and at times a little warm all over which was actually sort of relaxing and calming. Slept ok, had some weird dreams, but nothing out of the norm. I do remember my hands and arms going numb a lot which has never happened before. Then this morning when I woke up I immediately felt anxious, I would just shift or turn over and my heart rate was sky high! Once I woke up completely I took my bp and it was 89/59. Probably the lowest reading I have ever gotten, especially in the mornings as my bp is high and then it's lower during the evening. I hate feeling like a crazy person! Anyone know why this would happen?

Normally I'm perfectly calm in the mornings unless I'm going through a huge flare, which right now I'm not. I'm just right at baseline symptoms for me.

[brethor9]

thanks Alex makes perfect sense

Bren

[Lemons2lemonade]

Although florinef has powerful mineralcorticoid effects, it also has pretty high glucocorticoid effects in comparison to other steroids. The only glucocorticoids stronger are dexamethasone and betamethasone. http://www.endotext.org/adrenal/adrenal14/adrenalframe14.htm This means florinef is more potent in glucocorticoid areas than predisone, methylprednisolone, and cortisol in equivalent doses. Sometimes I wonder if it isn't also the glucocorticoid properties of florinef that also help us by turning down immune function. Moreover, glucocorticoids help with glucose metabolism which is an important function for cellular respiration- converting glucose to atp working with the citric acid cycle. I.e. glucocorticoids are also involved in the mitochondrial process. So basically, florinef acts on the water retention, immunosupression, and mitochondrial processes.

[Guest Alex]

Lemons,

thanks for the link and for the info. It helps a lot.

Alex

[Mytwogirlsrox]

Asheltin80-- I stopped taking florinef for that reason. I turned super crazy!! I was having the worst anxiety, numbness/ tingling etc.. Really weird stuff happened after I started it. I think I remember reading anxiety was a potential side effect.

[Ashelton80]

Ok thanks mytwogirlsrox.....my body is exhausted tonight after the Fludro throwing me for a loop. I will say I felt more alert and more energy, but it was not a good energy. Like crazy jittery drank too much coffee energy. Ugh.

I can't take it again because I'm just so worn out and I need to sleep! And yes the arm and hand numbness/falling asleep was definitely a symptom I have never had. Pretty sure I won't be taking that again.

[AllAboutPeace]

I took Florinef .1mg since 2003. When I started having High Blood Pressure and edema in my left leg a few weeks ago. I just stopped it. I can't tell a difference taking it or not taking it. The only thing is that I have stopped peeing so much since I stopped, but that doesn't make any sense to me (regarding the Florinef)

McBlonde: did you really stop taking it without weaning down?? Did your high BP and edema settle out after you stopped it?