Poll About Florinef

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This is a totally self-serving poll since, as I mentioned, I'm about to try this medication. I'm really nervous about it, and I thought seeing other peoples' experiences would help me.

[janiedelite]

I did okay when I was on 0.05mg twice a day, had a little more energy but I also had more chest pain. I thought that doubling the dose to 0.1mg twice a day would help me have even more energy. So my cardio okayed the increased doseage. It takes a week or more to really take effect and by the end of the second week I had terrible orthostatic hypertension, chest pain, and migraine.

Just my experience, but if you decide to take it you might benefit from the lowest dose possible and then slowly increasing it.

[erik]

I voted "I take Florinef, but I'm not sure it's really doing anything" although technically I'm not taking it at the moment! I am cleaning up for testing purposes, but will most likely resume it later. It seemed to have modest benefit and I'll be trying again at higher dose if I can tolerate it. I took 100mcg (.1mg) before and tapered it up by halves over about a week or so.

I did get moody and had persistent headache for half a week while acclimating to it, but that passed and then it had modest benefit (was able to cut water intake a little but keep hydrated and might have had a bit more endourance... hard to say). Wasn't a miracle pill for me but I think it helps some.

[Csmith3]

I must be lucky because it makes a real difference to me. In particular, it helps me cope in hot/humid weather, giving me more standing time and I generally feel less light-headed.

I wasn't sure at first that it was doing much as it can take a while to reach a useful level in the body so the improvement is gradual, but when I've had to stop taking it I've realised just how much it does help. I've never had any problems or side effects with it either.

[mkoven]

I had been on midodrine for about 6 mos when we added florinef, so I don't know how it would work alone, but combined with midodrine it has really helped. Midodrine was very short acting, so I would crash between doses and ended up in the hospital with terrible chest pain and bp swings. .075 florinef has really evened me out-- I rarely have chest pain and my bp is a lot more even. It made me jittery at first, but I tolerate it now. I hope it's okay longterm, because I can't imagine how I'd function without it. No real side effects, though it does seem my skin is a little more fragile. I was scared to take it, as regular steroids like prednisone give me terrible side effects. I'm so glad I take it. I'm not autonomically normal, but much, much better.

[goldicedance]

I wasn't sure what box to tick. I tried Florinef and under no condition would I take it again. It not only raised by blood pressure too much but it gave me migraine headaches for which I needed hospitalization for several days.

When I was taking it, it did help. It was only after a few months that the blood pressure spikes and migraines occured.

Frankly, I would give it a try.

Why not try it and see what happens? It becomes very difficult to treat POTS if you are not willing to try different drugs and approaches. What works for someone may not work for someone else.

Good luck!

Lois

[potsgirl]

I've only been able to stay on Florinef for about 10 days at a time. I get very painful migraine headaches and just feel sick in general. This was on a .05 dosage. I never could stay on it long enough to raise my dose. Midodrine doesn't do anything for my low BP, and for me it works about 2 hours, and then I crash. It could be a great drug for you, though.

Cheers,

Jana

[tinkerbella]

I didn't know what to choose as nothing fit me...

I really dislike the florinef, but hate fainting in the middle of the night.

I also can't come off it as I have no other options right now.

It's side effects or fainting in the night....

Going for 3rd more intense TTT to see what is what else is going on along with a full

battery of monitors and tests...

blessings to all,

bellaMia~

[chipper]

Side effect too severe.

[mountain girl]

I take Florinef 0.1mg every morning. I started on it soon after being diagnosed. The dr. first started me on Bystolic, which is a beta blocker to keep heart rate down, but my bp went so low I felt bad so 3 days later he added the Florinef and it did help keep my bp from going so low so I did feel better. The reason I am not sure it really helps, is because I still do not feel "well" and when the dr. has tried to increase the dose I did not feel any better, so I stay on the 0.1 mg dose and am somewhat afraid to try without it since originally I did think it helped some. I have not really had any side effects on this low dose. I did have trouble sleeping when the dr. wanted me to try taking 0.1 mg. in the a.m. and 0.1mg. in the evening. I tried that for about a week and then I knew it was the evening dose of Florinef because when I went back to just the a.m. dose I started sleeping better again. I believe it is worth a try for you. If it makes you feel any better, I am usually very sensitive to meds and side effects but am able to tolerate this. Someone made a comment that may have been good for me to hear, because I am often afraid to try new meds,they said with pots because the same meds do not help everyone the only way we can find out is to try. I also read that if something is going to help, it usually helps within a few days to a week, and if not we usually are able to know that fairly soon too. Good luck.

[Dawg Tired]

I clicked the second box, but that isn't quite right. The side effects were just too severe. After 4 days I stopped it. It did not help.

[Sophia3]

Didn't take the poll yet, Just my third day on Florinef. half of a .1 pill.

Tried it once 11 yrs ago and it just gave me headaches and I still peed way too much. I finally went to DDAVP as needed. In recent months or year my fatigue has gone WAY downhill. I had a hysterectomy a couple years ago (STILL have ovaries, did not have oopherectomy) and I am not in menopause or anything. My endo keeps testing FSH and other hormones. though those can change on people.

we are trying it again as I am too FATIGUED...feel deflated, dehydrated all the time. Exercise has not helped.

This time I have weird chest pain. I have sore breasts often due to fibrocystic junk..so when I have this chest pain, I touch my chest and it's worse..so dunno if it's coincidence of half of a .1 pill of Florinef.

What kind of chest pain did you guys have?

Anyway, my doctor knows I am sensitive and I can take it daily or alternating days or every third day.

ALSO I notice my tongue tastes salty??

But I have cotton mouth issues so who knows. I am cutting back on salt and we drew blood work at the doctors office on Thursday but I have not heard back. Electrolytes and thyroid again.

I need to be on this a couple of weeks to decide.

[Renata]

I clicked the second box, but that isn't quite right. The side effects were just too severe. After 4 days I stopped it. It did not help.

My experience was similar. I think I managed to keep taking it for 2 - 3 weeks, but the side effects were such that I couldn't continue.

You never know until you give it a go though, I know others who do great on it!

[dakota]

My daughter lasted less than a week before we had to take her off it.

[tinkerbella]

NOW THAT I'VE gotten over the first set of terrible side effects. I'm glad I stuck it out. I'm not having the terrible events in the middle of the night of fainting or near fainting and living alone that is very scary. The fall and faint I did recently was a combo of things of trying to do tooooooooo much as I'm trying to do as much as I can before I lose myself. As I see it and it is pointed out to me by others, so I running in place and out of place as fast as I can before I have no say in where anything goes in my life, including myself.

I guess what I'm trying to say is if you can is give it a chance. I had no other chance this time so I had to take it. I was givin flexibility when I started to show signs of this was not going to work: the bleeding ( my period coming back ), nausea, bruising really bad and still, super migraines, eye problems, and I'll make some decisions when the next major blood work is done. All I can say is I now live with borderline high BP at times of the day and low BP at other times of the day. I'm just not falling to the floor in the middle of the night. We have to keep my standing BP high at least 150 so I won't faint. My numbers drop so rapidly between BP falling and HR falling I'm one dizzy dame once the fall begins.

I'll meet with my doc next week and go over all the tests and data and see what we will be doing from here.

[Potsie007]

This is a totally self-serving poll since, as I mentioned, I'm about to try this medication. I'm really nervous about it, and I thought seeing other peoples' experiences would help me.

Florinef was the first med that my doc put me on. 4 days after starting it, I was unable to get up out of bed. After 3 tries, I finally managed to get up, make it to the bathroom, then I blacked out on the floor. I literally was unable to get up off the floor (gravitational pull was WAY too strong), but luckily had my cell phone on me. I called my doctor right away and told him what was going on. He said I needed to call an ambulance and come into the hospital. I wound up staying a week in the hospital where they also put me on Midodrine (which also helped, but was a nightmare for me to take--it made all my symptoms 1,000 times worse), Celexa, and Lopressor. After 1 month, I tapered off Midodrine, then seemed to do quite well after I passed a stress test and another tilt table. (I believe the exercise and tilt table "reset" my body somehow) After continuing Florinef, Lopressor, and Celexa for another month, in addition to adding mild exercise (walking), I've been doing great! I have just been weaned off Florinef for 2 days now since mid-July. So far, I'm ok, but having more symptoms creep back in. Thankfully they are mild at the moment and I am still up and about.

Sorry to have written a long post, but just wanted to share what has worked for me in hopes it may help someone else. Take care and good luck! Let us know how you're doing!

Potsie007

[jennyg97]

I was on florinef for several years and was the most stable I've ever been. However, be aware that this medication can cause issues with your potassium levels. Your doctor should have your potassium tested within a short period after starting the medication to ensure that you are not losing too much. I had to be on prescription potassium supplementation as long as I took this medication (and was hospitalized once when they increased my florinef dosage without increasing my potassium supplementation).

The only reason I am not currently taking it is a bone density problem (associated with another medication) that got all the doctors too scared to allow me to take corticosteroids. I'm trying to build my bone density sufficiently that they will allow me to take this again, as I am now passing out almost daily and feeling miserable about 98% of the time.

[sue1234]

Wow, after reading all the posts, I am surprised by all the people that are NOT on the forum anymore! I recognize everyone's name, but just realized they don't hang here anymore, or at least, don't post. I wonder what became of them--did they get better or still the same??

[Guest maia]

I ticked the last box. I have very mixed feelings about this and part is probably due to lack of info from the docs but here it is. I was put on it when diagnosed with a dose of .1mg. It took 2 weeks to kick in and then gradually over the next couple weeks i almost felt normal. It also improved a number of various life long 'issues' that no one could quite figure out and called me crazy about. I loved it for several months. After that it seemed not to be working as well so my dose was upped by half. Then the side effects started. Headaches, inability to eat carbs/sugars, high blood sugars, unable to breathe after eating, generally very ill feeling, worse tachycardia, horrible yeast infections throughout my body, and it made me very batty. I stopped and immeditely the next day i was bettter and feeling almost normal again. After about two weeks i started crashing again. Im not sure how much was the fludro or maybe my adrenal system just going out of whack and i may have had an infection it was masking also. I hope this doesnt scare anyone, its not meant to, just my experience. I am considering trying it again though, just to see if maybe i did have something else going on which the fludro masked and exacerbated. It really was wonderful for a few months.

[mwise]

When I was 1st diagnosed, I was placed on Florinef .1mg daily in the hospital. No one really explained to me how it would help and what to expect. I couldn't tell if it was helping at all during my hospitalization because I was so sick. When I was discharged home on the same dose, I noticed after I took it, I would get severe headaches, and experience anxiety, depression, insomnia, and extreme weakness to where I felt I was getting worse and basically stopped the med. I had been on it for about 3 weeks. The side effects went away, but I still was basically couch, chair & bed bound with low bp, weakness & dropping to the floor every time I would stand up. It wasn't until I was started on Midodrine, Mestinon, Domperidone & homeopathic meds that I began to feel better and walk again. Like everyone else, I would give it a try. It may work for you, but also as others have said, you may have to adjust the dosage. You have to find what works for you. If it can get you to feel better, than it is worth it. Good luck

[Katybug]

I take Florinef (.1 mg) and it definitely makes a difference. I didn't realize how much it helped until I had to go off for a couple of wks during the summer for testing. I felt a difference within a few days. I think I pee'd more than I drank once the Florinef started leaving my system. And I was soooo thirsty all the time, my skin was drier, and even my eyes were really dry especially when I woke up each morning. I didn't feel a huge difference in my major symptoms but it was apparently doing something.

We did try to up my dose and I had a severe migraine and swelling in my face by the third day, so I have to stay at the lower dose. I would recommend trying it. The effects from moving to the increased dose did not last long (24-36 hrs after decreasing the dose) so if you have bad side effects, I don't think you will have to deal with them for an extended period of time if you stop taking the med. Maybe others can let you know how quickly they recovered from poor side effects?