For Those That Take Florinef

[MommytoSJEA]

I'm getting severe headaches with this med. I've been taking it for only 4 days. I need to take something for it. I do remember reading that I shouldn't take ibuprofin. For those that get headaches....what do you take to help relieve the pain?

~Kelli

[tinkerbella]

i would ask you dr.

i get daily migraines and need meds for different occasions and one you can only take 8 times a month.

so everyone is different.

somestimes, i just need a little caffine, a hot shower, and a nap.

other times i need more and i use what my doc has ordered for me.

bellamia~

[mkoven]

I take ibuprofen with florinef with no problem, but then florinef itself doesn't cause me headaches, so I don't have to take ibuprofen regularly.

[potsgirl]

Hi Kelli,

I was unable to find anything that relieved my severe headaches from Florinef, so I just had to stop taking it.

Sorry!

[juliegee]

Kelli,

ANY headache with florinef needs to be taken quite seriously. A headache is your first clue that your dosage may be too high and causing hypertension. I hope you're checking your BP throughout the day. If that's high, you found the problem. Reduce or stop taking the florinef ASAP- per your doctors recommendations.

What dosage are you taking? Florinef is best taken in tiny increments, like a 1/4 to 1/2 of a 0.1mg pill so you can slowly work up to a therapeutic dosage. It must be taken with extra salt and water in order for it be be effective. The florinef & salt helps hold in the extra water and converts it to increased blood volume. When this is overdone, high BP (and a killer headache!) can result.

In higher doses (over 0.05mg) florinef can rob your body of potassium. That should be checked periodically (via blood testing) while you are settling on a dose. Bananas, potatoes, or OJ can help- some have to take prescription potassium supplements.

Let us know how you are doing. BTW, Alleve, Ibuprofen or tylenol is all fine with florinef; but f your dose is right- you won't need it

JUlie

[tinkerbella]

Were you not going to take ibuprofen as it's used to blunt the heart rate or cause bleeding with bleeding disorders. I do take migrinal when they are really bad but I can only pick 8 times a month to use. Otherwise I can get rebound headaches.

[MommytoSJEA]

I was taking .1mg 2xs a day. Thats what the doc started me on. I called yesterday and they lowered my dosage to .05mg 2xs a day. I am checking my BP through out the day and it seems to be all over the place which I told them. They said try the lower dosage and see if that helps. They told me to only take tylenol, and nothing else. Which does nothing for these darn headaches.

Thanks everyone for replying back

~Kelli

[juliegee]

I was taking .1mg 2xs a day. Thats what the doc started me on. I called yesterday and they lowered my dosage to .05mg 2xs a day. I am checking my BP through out the day and it seems to be all over the place which I told them. They said try the lower dosage and see if that helps. They told me to only take tylenol, and nothing else. Which does nothing for these darn headaches.

Thanks everyone for replying back

~Kelli

Kelli,

That dose (as a starting point) was way too high. It definitely accounts for your headache and, I'll go as far to say, that it actually jeapordized your health. I went back and read your initial post. You suspect your doctor doesn't have a clue as to how to treat you and it appears you are correct I am so sorry. It is really inexcusable as the information is easily available. Dangerously raising a patient's BP is inexcusable.

The docs at Johns Hopkins recommend starting florinef at either a 1/4 to 1/2 of a 0.1mg tablet for a week (and combining that with increased salt & water.) If that's helpful, go up another 1/4 to 1/2 tablet for an additional week. You can go as high as 0.2mg (a very few here go higher) as long as your BP doesn't rise and you don't get a headache. The headache is your clue that the dose is too high and you need to reduce it.

Florinef is to be taken in the AM. It will keep you awake. There is NO need to take it twice a day. Titrate it up in tiny doses until you reach a therapeutic level that makes you feel better.

When my son was taking 0.2mg, he took 6 Thermotabs (salt tablets) a day. He takes 0.05mg now with 3 Thermotabs daily- just trying to give you an idea of how much salt you need to take to help the florinef work.

I am so sorry you have been through all of this AND so many ablations too. It makes me very sad. You are definitely on the right track now & I hope you find a med regimen that helps soon.

Hugs-

Julie

[daisy]

I was on a .1mg daily of florinef for a couple of years.....had to go off because I just couldn't tolerate it...my bp would go too high (I have hyperadregenic POTS it is believed so I go high as well as low).....usually when I would get a headache it was because my bp was too high...I could only take Tylenol. Feel better!!!

[dakota]

My daughter was put on florinef a while back, but was extremely nauseous from it, so we stopped it. She was started on .1 once a day. Now, from reading this, I'm wondering if we had started off at a lower dose it if would have worked for her.

[tinkerbella]

I was started of on two pills a day and went to one one day and two the other. Now it's one a day till I go to salt tabs. My whole life I've been nauseous. This has made it worse so I don't expect salt tabs to be any easier on my tummy. I know my doctor goes by what is written in the medical journals and I was passing out at night, living alone and needed help badly.

I trust what he does with me as many things we go sliver by sliver. We can and I do read about the meds we are talking about taking and then come in armed with information. Then he explains why we have to do what we need to do. The best part about him is not only is he smart, but he smiles and we laugh together. We I cry he is compassionate. Having pots requires a doc that does so much more than dispense meds. I'm so thankful for everything these days.

Bellamia~

[flop]

Grrr, it drives me mad when I hear about people being started on too high a dose of florinef.

MORNINGS ONLY - for people with POTS / autonomic problems we only need to take florinef at breakfast time (best taken with food, not on an empty stomach). Unfortunately florinef is not licenced for POTS, its FDA approval is for Addison's disease so the prescribing information in most drug books is all about Addison's not POTS. In Addison's the adrenal glands don't make any steroids so twice daily dosing is needed. However in POTS we take florinef to boost BP not to replace hormones. Taking steroids of any sort cann cause insomnia, the best way to minimize problems is to take florinef in the mornings.

STARTING DOSE - most POTS patients are started on 1/4 or 1/2 of a 0.1mg tablet (ie starting dose of 0.025mg = 25 micrograms to 0.05mg = 50 micrograms).

When I was started on florinef I took 50 micrograms for 1 week (half a tablet), then I moved up to 100 micrograms ( 1 tablet) for 3 weeks, then carried on increasing (by half a tablet each time) every 2-3 weeks until I got up to 300 micrograms (3 tablets = 0.3mg).

Seen as you got a headache on your starting dose you really do need to cut down on the dose. Your doctor suggested reducing to half a tablet twice daily. I would phone them up and ask about taking half a tablet once a day (I would tell them that you have read about starting doses on here).

Hope you feel better soon!

Flop

[flop]

Now it's one a day till I go to salt tabs

Usually florinef and salt tablets (or increased salt in your diet) are prescribed together - florinef works in the kidneys to increase re-absorption of sodium from the urine. As the sodium is pulled back into the blood water goes with it. The increased water in the blood raises your BP. In order to get the benefit of florinef you need to take enough water and salt.

Flop

[MommytoSJEA]

Now it's one a day till I go to salt tabs

Usually florinef and salt tablets (or increased salt in your diet) are prescribed together - florinef works in the kidneys to increase re-absorption of sodium from the urine. As the sodium is pulled back into the blood water goes with it. The increased water in the blood raises your BP. In order to get the benefit of florinef you need to take enough water and salt.

Flop

Now my DR did not tell me anything about taking salt tabs. Or even increasing my salt. I figured I had to just from reading it on here, and I have been drinking Poweraide like its going out of style. I don't know how much salt to increase by (which I HATE salt and have never never used it on my food or even to cook with, been told to follow a low salt diet for the past 7 yrs!) or if I take salt tabs I don't know how many to take. I hate all this. In the few days that I have been posting, I have learned more here then my own DR has told me in 7 years. Thanks guys. I appreciate it.

~Kelli

[flop]

Hi Kelli,

I'm glad that you are finding useful info on the forum. There is so much to learn about POTS / autonomic problems and most doctors don't know that information so can't tell you.

If you search for "24 hour urine sodium" you should get links to previous threads where I have posted about testing to see if you are taking enough salt. The search function is at the top right of the page, let me know if you can't find the info.

Flop

[flop]

This link should take you to a thread about salt.

Flop

[MommytoSJEA]

Thanks Flop! My doc has never ordered a 24-hr urine. Why am I not surprised.

~Kelli

[heathmcev]

Thanks so much for all of this great info everyone! I'm starting florinef tomorrow - and so glad I looked here first! Yesterday my EP told me not to bother any longer with salt tabs and to just take the florinef - starting at .2mg. I asked him twice if that was ok given my very sensitive body and he nodded. GRR!!!! So I'm going to follow Mack's Mom here and cut up the pill for a few weeks.

Thanks for posting this Kelli!!

dizzyde

[MommytoSJEA]

Glad to be of service Dizzyde! IM not liking the med too much myself right now, but I'm willing to give it the time it needs to get in my system and start working properly. Right now I think its just all side effects. Time will tell I guess

~Kelli

[erik]

When I'm not on florinef I eat mass salt. This get's me 10mmHg boost at best and maybe some stability (everyone will vary, of course). When I'm on fludro, I taper my salt intake and the fludro mostly works enough for me off of regular intake (most people's diets have a lot of salt in them already).

NSAIDS like ibuprofen contribute to volume building via prostaglandins so they are partly cumulative with fludro on blood volume. For me, the combo gives higher BP than I want. They don't create a crisis or anything, they just work in same direction so be aware of their effects (be aware of any diuretic or pressor or volume builder if you can .

If I combine high salt/water plus 0.1 fludro I go too high with BP (again people will vary, you've got to feel this out yourself over time). To drop BP I minimize the quick-actors like salt & water first. My weight scale is my quickest judgment of hydration (other than my personal "sense").

I had headache & moodiness for 3 days my first time on fludro even when going cautiously from .05 to .1 but I watched my BP and it was ok. After that, no problemo & it started helping instead. Now I can jump in at any dose without issue, like my body knows what to do with it and it isn't a foreign invader throwing me out of whack. I almost quit that first time, though.

This is a touchy judgment call between you and your doc. Reportedly some people can have "unsafe" reactions, others are merely "uncomfortable". I do not know and will not attempt to define "unsafe"

[Jan]

I have found taking Florinef twice a day helpful. I take it at 7AM when I get up with my kid while he gets ready for school. Then I go back to bed and take another .1mg at noon. I have found this works better for me than taking it all at once. Seems like the effects last longer. If I forget the noon dose, I know it because I feel really bad around 4PM.

My doc started me off at full dose right away, but I don't seem to have the med sensitivity of others so it went fine. It did take a month or more of being on it for me to feel better, and I did spend that time adjusting times. He had me taking it in the AM and then at night. At one point I was even on .3mg. The .3 made me feel great for about 3 days and then it made me feel worse.

I think you have to kind of figure out what works for you because we aren't the typical patients in the medical journals. Most doctors mean well, they just don't understand every illness.

[MommytoSJEA]

I'm on day 9 of this med and the side effects are still killing me even with the lowered dose. I actually have a call in to the doc right now...awaiting thier call back. Last night I was sitting on the couch, hadn't moved in like 20-30 min, and I felt horrible, like I was going to pass out, my whole body was tingley numb. I had been kinda feeling like that on and off all day, but when I stood up I felt better. Totally backwards right?? Well I asked my hubby to grab BP monitor and it was 142/101 Which for me is rediculously high. Im usually like 102/80ish I was supposed to take my meds again at that time, but I waited a little bit. It went down to 126/89 within an hr and I took my meds. and then went to sleep. Woke up feeling better. I hate this med so far. BUT I'm willing to stick with all the bull crap side effects to give it the time it needs to see if it actually helps. So far I think no, but I know it takes awhile to get the desired results.

Erik how long did it take you to start to feel better on the meds. Not just loss of side effects, but actually the wow I feel better feeling?

~Kelli

[MommytoSJEA]

They just called back and said to drop it down to .05mg only once a day and to see if that helps. So I guess we will see.

~Kelli

[juliegee]

I have found taking Florinef twice a day helpful. I take it at 7AM when I get up with my kid while he gets ready for school. Then I go back to bed and take another .1mg at noon. I have found this works better for me than taking it all at once. Seems like the effects last longer. If I forget the noon dose, I know it because I feel really bad around 4PM.

That's interesting, Jan. I have never heard of anyone taking it in separated doses. It seems like it would keep you from sleeping, BUT if the illness makes you really, seriously fatigued, maybe the separate doses help keep your energy level up. We are all different I'm glad it works for you!

[erik]

Erik how long did it take you to start to feel better on the meds. Not just loss of side effects, but actually the wow I feel better feeling?

My bad effect zone was somewhere like 7 to 10 days in, which was a few days after getting up to my .1mg (100mcg) target dose.

The key rather immediate & noticeable benefit for me is shifting my BP up a bit so that it stays more stable and if it does decide to drop out I'm in less of a symptomatic zone. Other than that, my first time on fludro I was disappointed that it didn't do much for fatigue for me. Second time, and after a couple months, I do think it was helping my fatigue (basically making me more "resilient" to activity). I don't personally get a huge boost like some folks, but I do get enough subtle boost that I continue it. I don't have any noticeable side effect at this point so long as I keep an eye on things and stay short of "edema" and too much bloat feeling. If I were having more side-effect continuously, it would be a tougher call on continuing it. At no point has it removed my pulse increase upon standing, just let me control my BP better... like amplifying my other efforts.