Florinef Fear

[India]

My doc has recently prescribed florinef (.1mg/day) after exhausting other options--midodrine rocketed my heart rate to unbearable levels, paxil just worsened my sleep problems and caused terrible anxiety, and both failed to solve any of my POTS related symptoms.

I took the first dose today after putting it off for about two weeks. Obviously I'm not feeling anything as yet. But, having searched the archives here for florinef I am obviously anxious about the side effects. I asked my doctor what the most common side effects were and she casually said, "oh, not serious, just a bit of water retention."

Having read the archives, however, I am now completely freaked about the possible side-effects that people reported, especially the headaches and weight gain. I suffer from severe headaches anyway and don't want to make them worse. And as for the weight gain--this is going to sound extremely vain--but I recently finished the only successful diet I've ever been on (lost 45lbs) all in an effort to make myself feel physically well after feeling awful for about 10 years while I waited for someone to diagnose me. Anyway, I just don't want to put any back on--I don't think my fragile self-confidence will take that!

Is there anyone out there who has had a positive result with florinef? On such a low dose should I be taking potassium supplements too?

I resolved at the beginning of this year to try and be more positive and harness the power of self-healing. But it is sooooo hard to do when everything they prescribe just makes me feel worse. I've completely forgotten what it is like to feel "well." At the moment I'll settle for feeling "better" than yesterday!

The best medicine I've found so far are the inspiring stories on this site. So thanks to all of you!

India

[OCsunshine]

I am also on a very low dose of florinef. I have been on it for 11 years and it is a great success for me. It did take a while to get used to, as did all of my meds. Don't give up right away- sometimes your body needs an adjustment period.

But the florinef works great for me. And yes, even though right now I take .1 mg pills (and I only take 1/2 pill in the morning, so really that's .05 mg), I take a lot of potassium to balance it out. I take 40meq/day of potassium. You have to be careful with K supplements because our bodies don't absorb it very easily. I tried the generic brand of K-Dur a while back and it sent me into the hospital needing bags of K rushed into my body (ouch). But now they have new generic forms of K-Dur (I'm on one called Klor-Con) and it works great. They are doing much better with the generic forms nowadays.

I hope you have a great experience with it, too. Any med that is on the market has a list of scary and horrifying side effects. I don't read those before I take the med b/c then I get paranoid. I just figure I will get through the worst and it's worth the risk if it means possibly improving my health. But that's just how I feel.

Let us know how it goes!

-Rachel

[Rita]

I have taken florinef for a little over four years now. I do suffer from severe migraines to the point where I have to go to the er sometimes because my home med imitrex did not work. I have only had a bad experience to where I had to guit it for a while, but this can be controlled by watching your weight.

The experience: My blood pressure was going to high upon lying down 200/126 part was due to being sick the other was I gained too muck fluid.

The docs at Vanderbilt said to watch your weight and if you gain too much too fast and or gain ten pounds more than your baseline weight cut back on your dose or miss a dose. Watch your weight carefully and this will help alot. If you see that you do gain weight like this check with your doc to see that he/she is ok with this skip cut dose style.

Good luck,

Rita s

[Poohbear]

India,

I was on florinef .1 dose for 3 1/2 years and it worked well for me and then suddenly my body kinda rejected it and I had to get off of it. When it worked it worked well though.

I have trouble with headaches but noticed no difference in them with the florinef.

I did gain some weight and that was my most problematic symptom. I do understand where you are coming from with the weight issue. All I can say is that I'm not really overweight; I'm at the upper end of my limit for my age/height though and I think I look better when I'm about 15 pounds lighter BUT every time I lose the weight I feel worse. I actually feel better PHYSICALLY if I stay at the upper end of my "limit" (mind you I don't feel better psychologically--that's a battle).

Try to give the medication a fair trial and see what happens. Would it help you if you maybe compromised and decided something like."I will try the medication knowing I may put on some weight and I'm willing to try it as long as I don't gain more than 10 pounds"...something like that? I'm wondering if you could do that if it would help you still feel in control and know that your weight won't get back to where it was. Or maybe take all your measurements and be okay with yourself as long as you don't gain inches? (Because fluid volume increase is what you need which will put on pounds on the scale but not always change your size). Just a thought.

When I was on Florinef I had my potassium checked about every three months and I did have to take potassium pills because I was loosing too much potassium.

I started out taking K-Dur. Potassium can be really rough on your digestive tract if you have any stomach or digestive problems.

Rachel, it's interesting you mention Klor-Con. That is the ONLY potassium pill I've been able to take the past six months. I take 8 MEQ at a time and some days that's all I can manage. I have to eat a big meal with it but I don't get sick on these pills. Other days I can get two pills in me if I take one early in the morning and one at dinner.

[funnyfrog]

Hi India - My potassium was fine when I was on Florinef, for almost 3 years, but the weight gain was something that finally made me stop taking the Florinef, against my doctors advice - I have headaches off of it, as well as when I was on it - Each of us has a different experience and different side effects from medication - I was having alot of dental issues that I feel were a result of being on this corticosteroid,even if it was not a great big dose by the time I went off of it. After the withdrawal effects of the Florinef, I don't feel much different off of it than I did on it, except not as bloated - I still get just as dizzy,sweaty, POTSY feeling, tired, etc. so if your doctor thinks this med might help you, maybe you should try it - What works for one of us or does not work for one of us varies greatly. Also, since May of this year when I stopped the Florinef I have not been very hungry and without trying, have lost a little over 10 lbs. Beth

[ariella]

Hi India,

I'm feeling guilty about being one of the florinef-bashers in the threads that you mentioned. I cannot tolerate florinef, but have recently found out that it's because of another medical condition that florinef will worsen. In other words, if this other (neuromuscular)condition did not exist, could be I would have tolerated it.

Good luck!

Ariella

[persephone]

I'm sure florinef can do good things for people. I've not taken it myself. But another member of my family did to quite bad effect.

Just make sure your Doctor monitors your blood regularly- my grandfather's potassium levels went through the floor with this drug which led to a heart attack.

[yogini]

I took florinef for nearly a year with good results and minimal side effects. (Actually the hardest part for me was coming off the florinef when I didn't need it anymore) I didn't really have a POTS doctor when I first went on florinef so I didn't know about high salt and compression hose. I wish I would have given those at try before going on florinef, but otherwise I really have no regrets.

I started off on a low dose, 0.1 and then increased to 0.2. I did not have any problems with my potassium. I hope you are starting off on a low dose. I would just wait for a month or two and see what happens in terms of weight gain and side effects before increasing it any. It takes a week or two for the florinef to even start working. Hopefully any side effects would be minimal at a low dose.

As for the weight gain, I understand because I was in great shape before I got sick. I long for my pre-POTS figure. But I agree with Poohbear that I prefer having a few extra pounds and having fewer symptoms. I don't think florinef caused me to gain any weight. Although I did gain weight, I am pretty sure it is from my beta blocker.

I can see why you might be scared to try florinef b/c of everything posted on this board. Although it sounds scary, we are all different. And according to the literature I've seen, florinef is one of the most commonly prescribed drugs for POTS. If your doctor is prescribing it, it sounds like it's worth a try.

[Sunfish]

hi india -

i don't think we've met before, so hello!

i'm sorry you've been having such a rough time & striking out on several meds. that can definitely be SO frustrating.

re: the florinef, i am no longer on it but was for several years on & off. it was helpful &/or neutral for a good amount of time, although i did have problems with potassium. i was on .2mg/day for most of the time, .1 for a short while. potassium seems to be an issue for me even though i haven't been on the florinef for quite some time now (years), though not as badly. i would suggest that you ask for your blood to be checked for the potassium issue so that you can be aware of it. many don't need to be on supplements, many do....it really varies. but it's always better to know one way or the other rather than running into a problem. you can then either make dietary adjustments &/or take potassium. that's the ultimate reason that i stopped the florinef. my stomach couldn't handle the potassium anymore at all & i couldn't get enough in me otherwise. but the florinef itself wasn't problematic for me.

re: the weight gain, i actually gained very little, if any, weight on the florinef. i felt a bit more bloated (not in stomach, but just in general), but the numbers on the scale weren't a noticable change that didn't correspond with other factors (i.e. eating habits). so...not everyone has the weight gain issue. oddly enough, i'm one that usually gains weight no problem....i.e. until this past year i've never had trouble with too much weight loss. but this didn't seem to follow with the florinef for me.

something else that you may not want to hear but that i'm going to say anyway in light of the fact that it may be helpful...your weight loss could be having a detrimental effect on your symptoms. i looked back & saw that you had asked about this when you first joined the forum; i wasn't around then but actually was going to say something about it even before seeing that you had asked. i'm not saying that you should go out and gain all the weight back, & obviously weight has many issues involved...but i do know that years back dr. grubb told me he saw/sees many patients whose symptoms begin following notable weight loss...and these were people who started at many different points, meaning they were varying degrees of overweight (&/or not) to begin with. as others told you, many have issues with weight loss as a result of autonomic issues, but it can cause them to flare up as well. not necessarily THE cause but MAY be a contributing factor. then again may not be too, but i had to mention it. and i KNOW that's not what you'd want to consider. i understand how tough weight issues can be first hand....while this past year i've had major GI issues that have cause weight loss, in the past i'm one whose body doesn't ever want to lose weight. and whose normal weight isn't huge but isn't tiny either. for me when i lost a lot of weight this year though b/c of the GI stuff i was at a horribly low, unhealthy weight for me despite not being so on a doctor's chart per se. i was on the very low end of "healthy" but looked like death warmed over. so...we're all very different in terms of where our bodies want to be weight wise. so while i'm not at all advocating not paying attention to weight or to doctor's recommendations, etc....i'm just wanting to say that it may be something to think about in regard to what's best for your body overall. for me i've gained a bit more back recently than i would have liked after the major loss this year. as much as i hated losing so much i wouldn't have minded if i had stopped gaining it back a few pounds ago....and hope i don't keep gaining. but between meds & the fact that i actually can eat pretty normally now i've already come to realize that i'd much rather be feeling better, eating, etc & be a bit bigger. the other was SO much worse.

ok...sorry for all the many ramblings...i hadn't meant to harp so much on the weight thing so don't take it personally! my real point was to tell you of dr. g's mention to me of the weight loss patients he's seen...and that many of them do better gaining a bit (not necessarily all) of the weight back.

i do hope things take an upswing for you and that you can find a combo of meds &/or other things that work well for you.

all the best,

melissa

[Bella127]

Hi India!!

I am currently on .10 mg florinef 2x/day. I have been on that dosage for the past 3 years or so .. no problems with it whatsoever. I think it keeps my BP up (haven't passed out in 3 years or so). Even though I have been having problems with low energy and a generally more "blah" feeling than in the past, I don't think it's at all due to florinef. The biggest thing I've noticed is a little bloated-ness, but that's it.

As long as you start small with your Dr. (maybe he will prescribe 1/2 pill at first?) I don't think you will have any major problems, although how a medicine affects one person can be different for another.

Hope this helps

*ChRiSsY*

[OCsunshine]

I am so shocked to hear all of these negative side effects! I didn't know it could cause so many problems.

I didn't mention (in my post earlier) that I had no weight gain whatsoever. Didn't feel any bloating... didn't have any problems at all! I didn't even know weight-gain WAS a possible side-effect!

It has just worked so well for me... I'm sorry others have not had that same experience. I take it with a beta-blocker and it's a super combination for me.

-Rachel

[SunsetParadise49]

I have been on it for about three weeks. Florinef takes a month or a little more to start working. You might not realize it's working, but your doctor will notice the little things. Stay on it until your doctor tells you otherwise. Don't be scared of the side effects, my doctor said that it is a very safe drug to use, so be happy! You should be aware of them but just don't get overwhelmed! Good luck!!!

Gwendolyn

[tracy]

Hello all,

This is to everyone, but specially Gwendolyn,

"Florinef takes a month or a little more to start working."

My doctor called the other day and told me to start on florinef, but to only take it a week before my period. She said to start 7 days before, the first 2 days take a tablet a day, then after the 2 days, take a 1/2 tablet for the next 5. If it take a month to start working, is this going to help by just taking it for a week? I have read all the posts, but just wondering if this will help.

Any info would be great thanks

Tracy

[SunsetParadise49]

From what I was told by my doctor, it takes a month to start working. I was on it before but didn't think it was working so I got a new medication through just my adult cardio doc. When we found the new guy he said to me that probably by the time I had taken myself off it, it had just began working. Does that help you any?

Gwendolyn

[tracy]

Thank you Gwendolyn,

Yes and no, I guess my doctor would know if that would help me, but it makes me wonder if just being on it for the 7 days will do anything.

Thank you for replying.

[SunsetParadise49]

Hope everything goes well with the Florinef. I was thinking about your post while I was in the shower...I was just thinking that it could depend on the dosage. Like mine is only .1 mg's and for the first week I only took one, then after that first week I was to take 2 . But anyway Good luck on it!!!

Gwendolyn

[India]

Thanks so much to everyone who replied. I am certainly hoping that the florinef can do something for me.

Your concern came at just the right time. I don't want to abuse this forum by getting too off topic, but this has been a horrible six months for me: my father passed away at a relatively young age, one of my beloved rescue cats died, and just yesterday her daughter passed away suddenly too. I am just so stressed at the moment and usually that sends me into a potshole, but fingers crossed, I'm surviving and haven't felt dizzy once for six days (higholy unusual for me in the best of circumstances) I guess the florinef can't be working after only a week of taking it, can it?

Anyway, thanks for all your support and love.

India

[becky]

hi India,

i have been taking .3mg of florinef for the past year now, i still have the odd pass out and have symptoms but (fingers crossed) i'm a lot better, however the florinef on it's own didn't seem to make much difference to me until i started taking an ssri aswell.

as for side effects, well, i am one of the unlucky few according to my doctor, i gained three stones quite quickly (within a couple of months), of which i have now lost two and feel much better, i have more body hair, i joke that i am actually becoming a chimpanzee, but really this is quite upsetting for me, i'm only twenty four.

and lastly i have been lactating for the past year which seems to be another side effect but my docs just say would i rather pass out? very helpful!

however i think i would rather take the tablets and deal with the side effects than carry on passing out as much as i did last year.

hope this has been helpful and hasn't put you off, apparently my side effects only happen to one in 10,000 people, i'm special!!

good luck

becks x x x

[momofpreciousboy]

I cannot take Florinef. I was told that raising the bed 4 inches would do the same thing that the medicine does. Something about something the liver makes makes you retain water and it only does this when you are upright, so raising the bed 4-6 inches tricks the liver and it keeps making whatever it was to make you retain water. That is just what I remember the dr saying--it was something like that--.

Whether it works or not I have not tried it yet (except for last night and it is supposed to take a while too.) My only problem with the idea is that wouldn't your brain need a break and be level with the heart, so you can get good blood flow? Jennifer