About To Start Florinef

[autumn]

Per advice here, I'm going to give Florinef a whirl before I really commit to IV therapy, at least more than once a week. I just filled the prescription, and I'll probably start tonight. (The pharmacist said it didn't matter what time of day I take it. Do any of you have more success with morning vs. night?) I've read through some old threads on it, and as with anything, the results are a mixed bag.

For those of you who are/were on it, what can I expect? I'm a little paranoid about weight gain, but I know that's likely with fluid retention. My doctor said to also watch my heart rates because sometimes the medicine can cause spikes. Is there anything I need to monitor while I'm on it? Any signs I should immediately stop it? The script says to take it once a day, but she said I could take it every other day or as needed if I tolerate that better. It's a .1mg pill.

I always get so nervous before starting a new medication. Ugh.

[TXPOTS]

The Florinef can make some people feel wired and cause insomnia. I take it first thing in the morning due to this side effect. Other people find mornings easier if they take it before bed. You'll have to see how it makes you feel. You can also cut the tablet in halves and even fourths. Some people find the Florinef gives them headaches and high blood pressure when the dose if too high. Florinef can take 2-3 weeks to build in your system. It is not uncommon to have to fiddle around with the dose until you find the right dose for you.

[hilbiligrl]

I have a quick question to add about Florinef. I think I read on here that florinef helps those to urinate very very frequently. I have had this issue for a few years. It disrupts EVERYTHING i do or well, did when i was able to do things. I can drink a glass of fluid and urinate it out within mins. I go and go and go and go and go and go.... it really tears my nerves up sometimes because of the intense urge to go as well as the intense frequency. Just asking to make sure if this was the drug that helped with this particular problem?

thanks

hilbiligrl

[autumn]

Thanks, TXPOTS. I'll keep that in mind.

Hilbiligrl, I was wondering the same thing. My situation isn't as extreme as yours, but I don't like to drink a lot, even though I know I have to. My boyfriend thought I seemed extra dehydrated one night and politely forced me to drink two glasses of water before bed. I had to get up no fewer than six times that night. For as little as I drink, I seem to lose a lot of fluid, especially in the 5 a.m. to 12 p.m. time frame. I was hoping this would help keep things in my system a little longer.

[Christy_D]

My son takes it in the morning, since it can cause insomnia and that is already a problem. As for urinating, he doesn't have a problem there. On 9 hour car drives to Cleveland, he doesn't have to go to the bathroom at all. So definitely no problem there.

[hilbiligrl]

Autumn~

I too don't drink but very little. I know im suppose to drink tons of water, but since i was a wee child I have only been able to maybe drink a glass a day of something. Water makes my indegestion worse, or it just burns my stomach..... so, gatorade, but even at that, i still can't force myself to drink even maybe 1/4 of the total amount needed in a day. If i force it, then i throw it right back up... i never get thirsty.... ever. The last trip to the er, i had spent a week without being able to swallow. I could only get down a few swallows of gatorade a day, yet, i urinated so often and so much, that one: measured output was so much greater than input and two: i urinated so much and so often that all i could do was cry. (and im not a cryer, im a tough as nails kinda person). After a solid week of that, rescue squad was called and when i got the the er, they said i was hydrated and NOT dehydrated... how could that be??? I was in shock. This is only one of my very many symptoms..... but one that has wore me out over the past 2 years. Can't wait to try florinef.

hilbiligrl

[radiohfan23]

I just tried this myself and unfortunately had some bad side effects. However, it is because I have the hyperadregenic type of POTS I believe this medicine caused problems. I never faint and experience an increase in BP when standing. From what I've leared the meds can be a godsend for those who experience a drop in BP when standing. My bad side effects mostly involved an increase in sympathetic activity (increased adrenaline feeling, anxiety, nausea, dizzyness, etc.). The good thing was that I had read on DINET that the increase in sympathetic activity in some was a common side effect. After two doses I stopped the meds and symptoms subsided within a day.

From what my Dr. told me it takes a few days to start working and a few weeks to fully set in but it can work wonders for those it helps. And yes it is meant to decrease the urination amounts. As an alternative I'm going back to taking salt tabs and have had decent results with that.

Good luck, I really hope this works because in some other posts I've read it's been wonderful for many who use it. Out of curiosity do you experience syncope and a decrease in BP when standing?

[hilbiligrl]

radiohfan~

you have have meant to ask that last question to autumn but I wanted to respond as well. The side effects as well as describing the sympathetic activity increasing from this med for you, rings so true to the ears for me with ANY drug i try. When you said that, i was thinking of many times of trying many different meds, yet having that same sort of side affects (mixed in with other side affects). The intense increase in sympathetic activity seems to be the forefront for breaking me into tiny little pieces and have me crying like a baby. Wow, im so glad you mentioned this, so as i know what to expect. Right now, i can't seem to differentiate between what is worse and more severe, the constant urination over and over or the sympathetic activity going massively through the roof! A side effect such as this: I would not be able to tough it out with any drug. But i wander, if it is possible for someone to tough through the increase in the sympathetic firing, if this effect would die down after that initial first week or two? hmmm........

As far as my blood pressure. When i stand, my systolic decreases, while my diastolic increases (and my heart rate increases as well). I have experienced some increases in the blood pressure every now again, but not near as much as watching the systolic decrease by as much as 30-40 points, while the diastolic increases as much as 10 or 20 points. I suspect I have hyper-pots, yet i dont seem typical of the high increase in blood pressure..... however, i have a question for well, anyone. If my blood pressure isnt sky high, why on earth do i feel my heart beating everywhere in my body? i feel it and see it in my eyes, head, ears, toes, you name it, i can feel it pounding everywhere alot throughout the day.

When i was in my severest of episodes, i did notice this.... that my bp would go from 124/65 while laying, to 145/115 when i first stood, but after standing a few, the bp would drop by a goo 30-40 points, this fluctuation seemed to continue for a couple of months . I have slowly weaned out of the severest of long term episodes (although by no means am i functionable for the most part even still yet) but and i havent had that sky rocket in bp in about 2 months, except once or twice. Keep in mind, it seems i am ever changing with this disease, nothing seems to 'stay' the same.... however, these past 2months, when an episode hits many times throughout the day, when i check my bp immediately... again, the systolic is about 90-100..... usually it would be normal at about 120-130... diastolic remains from 60-80

sorry i talk a heck of alot..... it's just ive battled this for 8 years without help from anyone till i came here. This board has been a true godsend for me and it's what helps me hold on till i get back to vanderbilt.

hilbiligrl

[radiohfan23]

hilbiligrl

Thank you so much for responding! I think i'm pretty similar to you in terms of BP readings and some of the symptoms you've noted. Any meds with me that don't work are normally a result of increased sympathetic activity. Before I discovered I have POTS I was given anti-depressants with horrific side effects. To the point where I could hardly stand, tolerate any stresses (even lights or noises) and was unable to eat. As soon as I start to feel that with any meds I just stop because it's hard enough living with POTs without compounding the worst symptoms. I'm just too weak and worn down to tolerate additional stresses.

I've gotta mention (be it unrelated or not) that like most of us I have trouble sleeping with constant severe uneasiness/anxiety symptoms so I've recently started taking unisom to deal with the sleeplessness and I have to report that it's been wonderful. It puts me to sleep and I only wake up once during the night and can get back to sleep quickly and easily. Also it has helped tremendously with my appetite and nausea problems (I've lost weight as a result of POTS). I really feel it's helped decrease the sympathetic activity for me. I don't take it every night as I don't want to become dependant. And although I feel drowsyish the next day it's fine because it's a relaxed drowsiness and I'll take that over the uneasiness any day.

Something to consider...

[hilbiligrl]

radio ~

I too have had years, upon years of insomnia. I could go 5 days easy with no sleep and as I am getting older, it is getting horrid. I have tried every sleep med out there, but to no avail. I have never tried unisom though. When i try benadryl or vistaril... omg, my sympathetic firing goes off the chart and the feeling is utter torture. I want to literally peel out of my own skin if that were possible. I respond best to benzodiazapines. Since i have a pharmacy background in school and work, i know all too well how addictive it is and it is for that reason i stopped taking it over a year and half ago. (and, at that time, i didn't realize how well this med worked for me... i had only taken it for about 9 mths). I use to be dead set on not taking any meds for any reasons... i had an abnormal fear of them and i still do. BUT... i have suffered in pure agony for so long that I know once they put me on klonopin again, that i probably will be on it forever... and im perfectly ok with that, as seeing what an incurable chronic illness can do to my physical, mental, pyschological, emotional, and spiritual well being. I had always tried to explain to the docs that it was as if my gaba receptors where firing uncontrollably to the point my head would explode if it were any more intense and chaotic.

So, upon that said.... i decided to start taking lunesta about 9 months ago. It does not put me to sleep by any means BUT it works similarly to a benzo (klonopin) in that it works on the gaba receptors in the brain, hence suppressing 'overfiring' of the gaba recptors perhaps? (i find it hard to explain things these days due to the diminishing cognitive abilities). So.... if i am having a really bad sensory overload day (which is a tiny portion of the multitude of daily symptoms), i will take a lunesta during the day and within 15 mins my sensory overload and any panicky feelings are subsided to a point that i can tough through it. And then ill take a lunesta at bedtime to remain calm, as night also brings about abnormal fears and worries. (i.e. many nights im so paranoid that i look out the windows alllllll night long due to the intense fear of someone breaking in... and well, much more to it than that and i think you might have those same weird intense fears like me at night... plus im a night owl since i was kid too). I have discussed taking the lunesta up to twice a day with my therapist and the doc who prescribes it.... as I am completely honest and since it is addictive too, i wanted to make sure they would be ok with it and lo and behold, they are ok with it and agree with me upon taking it up to twice a day, since at this time nothing else 'calms' my sympathetic system down. I refuse to start back klonopin until after my vanderbilt appt in feb.

Only in the past month or so have i added the trazodone (which i use to hate cuz it would drain me even more)... i had to do something as my sleeplessness was killing me and i started to get afraid i might do something rash and without thought just to sleep a few hours...... so, i added the trazodone hoping it would do the trick..... and i have found im sleeping much better with this combo; although i still have sleepless nights still.

I too am like you.... lights, noise, movement of other people, things, tv, myself; someone talking, touch.... it all goes in overdrive alot even still now several times a day. I usually have to cover up in bed, lay so perfectly still for hours and beg no one to bother me and allow me to tough it out, otherwise, i might harm myself in all honesty just to try to attempt to make that suffering go away... yes, it is that horrible and the suffering and agony of that part of this disease has shocked me these past many months. (not suicidal... just desperate)

I also have tried all herbal and natural remedies out there for sleep... only to have the same cause and effect.... the intense over-firing of my sympathetic system.

I will look up unisom though right now.... can't remember if it has the same type of active ingredient as benadryl, etc.....

hilbiligrl

[hilbiligrl]

radio~

one more thing.... antidepressants, especially ssris = dangerous side effects. Was admitted to hospital twice over side effects of ssris, as well as possible serotonin syndrome. I will never ever ever allow any doc to talk me into trying another ssri. I've tried them all (in order to not take a benzo or anything addictive)... but every one = some scary stuff going on. Even my fam doc i fired recently freaked out when i went to the er with some freak side effects several times. She finally got the hint that my system as a whole couldn't handle the addition of such chemicals.

hilbiligrl

[hilbiligrl]

radio ~

sorry, one more thought. I suspect that i have mcad and upon researching it and jotting down suggestions from previous posts from this board, i starting experimenting with the zyrtec and zantac in the morning. It seemed to work for a while... about 4 weeks.... then i stopped and progressed into a severe state for about 4-6 weeks and decided id try it again 5 days ago. It seems to really help many of my symptoms, not all, but quiet a few and for 4 days ive not been so severe at all. It is seeming to minimize my over-firing of the sympathetic system as well. Things are much more bearable these past few days. I still don't know certainly for sure if these 2 meds in the am are what is causing me to feel a bit better and im hoping its not a mini cycle of the exchange of symptoms every few days.... so i guess i will keep at it for a while and see.

just a thought

hilbiligrl

[radiohfan23]

Thanks for the information... I really appreciate you sharing all of this with me. I'm sure you've also realized that it does help to not be alone in this and that as backwards as it sounds it's nice to know that others have similar struggles.

One question though... what is mcad?

[hilbiligrl]

radio ~

It is called mast cell activation disorder. I had never heard of it until i saw many posts on here about. I had been on here searching and reading and learning for a few months before i could post and i kept seeing this mcad popping up again and again. I finally started reading up on it. I didn't think i showed the 'correct' symptoms of it at first, but when i started reading different posts on here about how they feel and certain things that they talk about, it just 'sounded' like me echoing some of the same phrases others used to describe their symptoms. I think i had read 'macksmom' posts about taking the zyrtec and zantac (generic of course for me). And i thought since its an over the counter meds, i might as well try it and see if i can notice a difference. And the truth is, i think i actually can... at least i hope.

Google it, and search for it on here, then cross reference with searches like i did 'mast cell activation disorder in pots' or 'autonomic dysfunction'. I would explain it, but my brain is 'showing its tail' today and not cooperating with forming sentences too well.

I do think i have some other issues as well..... so, i am starting to jot down everything to take to the docs appt with me over the next few weeks. (if i can get my brain to work to compile all my info and stuff together... lol)

I think i learned more from this forum about the 'hands on' part of having it rather than what is book taught in the medical field. I have discovered there are a few other diseases they mention on the forum that i show tell tale signs of, and if it werent for this forum and being able to start putting the pieces of my puzzle together, I would never known this stuff existed. After learning about the cells in the body, mitochondria and atp stuff in college... i had always told the docs it was if my cells in my body were doing weird things or that perhaps my ATP energy pathways in the cells are malfunctioning or something. So, what i felt, ended up kinda making sense in the end.

i hope that helps..... (and i hope that made some sense....

hilbiligrl

[flower]

Hello autumn,

I am on florinef. I started taking 1/4 tablet every morning, but for a while now I've been on 1/2 a tablet per day (.05)

I do think the florinef has possibly helped me stop having adrenal 'attacks' all the time. My blood pressure used to drop momentarily when I went more upright, but then go slightly high after my heart revved right up (at it's worst the specialist recorded it at 170bpm just from sitting up on the bed with my legs straight out in front of me). Like others, this can change though - just recently I've become very fainty, and can actually record a drop in blood pressure when I stand - whereas before, the drop happened too fast and the only thing that was recorded was the slight b.p rise, and dramatically increased heart rate - except for when I got the TTT and had the continuous blood pressure monitoring.

Weight gain has not been an issue for me with this drug. I've lost 27 kilos (nearly 60 pounds I think) since I got so sick and continue to lose weight (started off overweight though).

My potassium levels are checked via blood test quite regularly. If anything, I think the florinef has helped my heart not to go so nuts all the time.

Hope this might help Take good care I wish you all the best!

[autumn]

There's so much information in here! Thanks!

I took the Florinef last night, and I didn't sleep. At all. This is definitely a morning pill.

hilbiligrl -- I've never met anyone else who gets a burning feeling with drinking water! It feels like I'm drinking something acidic. I recently switched to gatorade, and that's easier to get down. I'm rarely thirsty, but if I am, it's always toward the end of the day. I do get dehydrated, however, and have often ended up in the ER for fluids when I'm really sick with a virus or something.

radiohfan23 -- I don't really know what happens to my BP when I stand. My first tilt was abnormal because of my heart rate, but my second was abnormal because my blood pressure was all over the place. I don't have the numbers from the second tilt though; I haven't even gotten a call from the specialist for a follow-up.

I'm still so new to all this, and there are so many variables and variants. MCAD, hyperadrenergic POTS -- it's kind of overwhelming, and I don't understand the differences just yet. I think I'm just so tired of researching and so relieved that I finally have a diagnosis, no matter how broad.

[autumn]

I accidentally took two .1mg pills today -- thanks, foggy memory. Is that a problem?

[Rachel]

Some people are prescribed a dose of 0.2 mg daily, although not everyone can tolerate that high of a dose. Taking it just one day most likely won't cause any problems for you. Just be careful!

I have messed up with my meds before too. There was one morning that I accidentally took my night time meds (including my melatonin), and boy did that make for a rough day!

Rachel

[autumn]

Thanks for the response, Rachel! I took some Motrin because I started getting a headache shortly after the second pill (I really think I'm losing my mind sometimes), but I felt OK otherwise. Let's hope I don't have a repeat of this tomorrow.

ETA: I just notice the melatonin the morning. That would definitely make for a difficult day!

[k'smom]

Kay started Florinef on Dec. 6th, .01 mg before bed. Her drs have increased it to .02 mg starting tomorrow because it hasn't been helping so far. As of yet, she isn't having any swelling or other side effects. She already had terrible insomnia, so I haven't really seen a difference in that. We will be monitoring her very closely when we start the increase, but as far as I'm concerned, if we don't start seeing an improvement, there's no point in continuing to leave her on it. I hope you have better luck with it.

Best wishes, Kim

[autumn]

Kim, I hope Kay starts to see some improvement with the higher dose. I've been reading your threads about her -- I lurk more than I post -- and my heart just breaks for both of you.