Florinef

[jenwic]

I have been taking two .1 mg Florinef tablets per day since May. I noticed I was having mild headaches every day and decided to take my blood pressure. I took it for 3 days and noticed it was in the 130's to 140's (top number). I cut back on my salt but it didn't change. It was a Sunday and I suddenly got worried and decided to do something. I called my pharmacist and he said I could safely skip the bedtime pill and call my dr. in the morning.

Thus began my week long nighmare I woke up that morning about 4:00 a.m. and my heart was flying! I was afraid to get out of bed to even pee and had my husband to carry me in. I seemed to loose a lot of fluids through peeing several times. I got my husband to take me to the ER, but when I got there we just sat in the parking lot cause I knew they wouldn't know what to do. I called the dr. on call from the office where my dr. works and she said missing one pill wouldn't have done that. I waited until morning and went to see my regular dr. (heart still flying). He said I must be really sensitive to have that kind of reaction to missing one pill. He put me back on it but said to watch my salt and try taking 1/2 a Florinef twice a day to two per day.

I continued to take a whole pill for 3 more days. Heart still racing 24 hours a day so I cut back to 1/2 twice a day (still not taking much salt). Called dr. and told him I still feel awful. He put me on Zoloft. After taking one at bedtime I wake up in the wee hours feeling like someone stabbed me in the heart with a hot poker. Heart racing and pounding incredibly hard. Went to ER (heart rate 150) and they gave me IV fluids (this helped bring heart rate down to 115-125 ) after I explained my condition. I kept having this hot feeling shooting across my chest. EKG was done, blood tests (my potassium was a little low so they gave me some) . Dr at ER called my dr. who said it would take 2 weeks for the Zoloft so give me a nerve pill to help me through this period.

I felt horrible on the Zoloft (nausea, diahrea, no appetite, started my period even though I was in the middle of the month on my birth control pill, muscles twitching, heart racing, adrenaline rushes, cannot sleep). I took it upon my self to quit taking the Zoloft and nerve pill. I started taking 1 1/2 Florinef pills per day ( 1/2 during the day and 1 whole at night) and added back salt. Within about 3 days I feel pretty much back to normal (for me)

Have any of you had a experience with stopping Florinef?

[lavender]

Jenwic,

I have no experiance with Florinef, so can't offer any help. I wanted to tell you my heart went out to you reading your post. I'm SORRY you are feeling this way. I will pray for some relief for you and direction medicine wise.

[cardiactec]

florinef is a tricky medicine, at least i have found, to take. if you arent balancing your fluids REALLY WELL with the med (atleast this was the case for me), it can cause extreme tachy by dehydrating you more than helping to increase your volume. it can also bump out your potassium (perhaps this is why you were low on your potassium??) ....

i took florinef for awhile and it caused severe headaches. at one point i was on .3 mg's a day and i remember feeling like my eyeballs were going to burn out of my eyelids, i was so so so HOT, burning up. it ended up causing me to become dehydrated because i just couldnt keep up with all the fluids i had to ingest to keep up with the the med in my system. my heart was racing out of control. i ended up cutting back the dose to .2mg's and i just kept getting bad headaches and it wasnt kicking the tachy.... needless to say, i no longer take florinef.

i'm sorry to hear of what you have gone through with florinef. some people it works wonders for, others it only causes problems....i hope you start to feel better.

[Aprilmarie52]

Ive been on florinef for 6 years and I have tried to go off of it several times, but just end up with an increase in symptoms. Glad you are feeling more like yourself.

[masumeh]

It sounds like you got dehydrated, particularly when you stopped the pill and had to urinate a lot that first night. Florinef, as my doc explained to me, is meant to hold fluids in your blood, to increase your blood volume and prevent your body from peeing it all out. He asked me if I urinate a lot b4 prescribing it for me (the answer was yes, so the pill was added to my treatment plan). But I had just about all the possible side effects after just one day on it...so, now I have a florinef phobia and there's no way I'll ever take it again (sides included psychosis, lethargy, muscle weakness,....it was probably for the better bc I read that over time it could have activated my latent TB....yikes!!). BUT it seems like it really works for you and you might just need to push fluids for a while and try some biofeedback to tackle symptoms of anxiety, etc. (you didn't directly mention anxiety, but I assume that is the case from the zoloft prescription). Try breathing with your stomach, not chest. Can you stand Gatorade? It's the easiest way I know of to get hydrated.

Hope you feel better soon!

[becky]

Hi,

i had really bad reactions to florinef, so i have finally stopped taking that and paroxetine and i have found that i am much much better without them both, im not suggesting that you stop! it's really hard, i did it over 6 weeks and cut down slowly, with my g.p's consent.

whilst i was on florinef my blood pressure soared to 150/98 most days and i'd just feel dreadful, if i missed a dose i'd get really dizzy and my heart would be pumping so quickly and having palpitations. i don't have thatny more. my bp has dropped since i stopped and i've been able to lose some weight, which is a huge bonus for me. i was on 0.3mg daily (all at once in the morning), and my cardio always said that it was safe for me and the headaches were to do with something else. Ifound that i didn't feel i was being listened to by my cardiologist and i felt that the tablets were doing more harm than good. it's only been a month but i feel good!

becks x x x

[juliegee]

Wow! You've been through the wringer with florinef! I'm so sorry for all you've been through. I just wanted to share a few thoughts. My son's doc at Johns Hopkins, Dr. Peter Rowe, has all of his patients start the florined very slowly- 1/4 pill a day for a week, then a 1/2 pill a day until you work up to a therapeutic dose. If you get the "headache from ****" you've exceeded the therapeutic dose. He has his patients increase in tiny increments until there is symptom improvement or .2mg is reached. (If symptoms don't improve, florinef isn't the drug for you.) Throughout this process, he does weekly blood tests to check electrolytes. Florinef has a tendency to drain potassium. Many patients need to supplement with a slow release potassium. He also recommends weekly BP checks to make sure your BP isn't getting too high. Lots of fluid and salt is essential to get this protocol (to improve blood volume) to work. Dr. Rowe recommends Thermotabs (OTC salt/potassium tablets.) My son takes .2mg of florinef and 6 Thermotabs a day. He also drinks, water non-stop.

I've just started with florinef. I started really slowly a la Dr. Rowe's protocol. For now, I'm taking 1/2 in the AM and 1/2 in the PM. I take 3 Thermotabs. I think it's helping. I've accidentally skipped florinef a few nights and I've felt markedly more tired in the AM.

Maybe you just started with too much florinef too quickly (without being able to increase salt and fluid), hence all of the horrible symproms.

Best of Luck-

Julie

[Guest Mary from OH]

I am in a very similar situation as you. I have been taking Florinef for a few months now and feel as if my heart is going to beat out of my chest!! Last week when I went to my PCP, my BP was 160/140!!!!!! I almost died!! The RN almost fell over as my BP is usually about 80/60. It has gradually increased and keeps doing so. It was running in the high 130/90 range and I thought that was bad.

I'm scheduled to see Dr. Grubb in February, but don't know if I can make it until then. I called their office to make sure everything was ready for the appt and found out that my appt is going to be moved even further back!!!! I am so disappointed!! I've already waited 6 months and I'm getting worse by the day.

My heart goes out to you!!

[thejohnsongang]

Whoa!!!!! Reading all of this scares me to death. Just yesterday, my cardio wrote me a precrip for florinef. He said the salt and thermotabs were not enough to control my symptoms and tach. My holter test showed tach and brach with my current medication. Now I'm scared to try the florinef. I haven't even filled my script yet. I drink all day and night, but also am loosing it all due to constant urination. He said the florinef would help and I don't go back for 6 months. He also told me to make sure I use BRAND NAME promamatine and not the generic form which I was on for the first 4 months of treatment. He said it causes a difference in symptoms relief for some, which it did for me. I have less symptoms of tach/brach on the promamatine than when I was on the generic. Does anyone know if the florinef is the same?

Mack's Mom- My daughter use to see a Peter Rowe at John Hopkins when she was very young. He was a multi-specialist when we went. He treated her for severe food allergies. She was in the ICU for a week and in a coma for 3 days due to food allergies. I assume it is the same doctor...If so he is wonderful. What is his specialty now?

[juliegee]

Hi Nolie-

Don't be afraid to try the florinef. Just start slowly (with your doctor's approval.) I started with a half tablet for a week and then 1/2 in the Am and 1/2 in the PM, etc. Your doctor's right. There is little point to doing all of that salt and water if you are just going to urinate it out. The florinef will help you retain it, thus increasing blood volume. My son and I both use generic. It works great.

About Dr. Rowe- He's a pediatrician at Hopkins. I think he always was. He specializes in "difficult cases." Kids/teens with severe, mysterious symptoms. Your child certainly applies- I hope she's much better! I think over the years, so many of the kids' symptoms have pointed to dysautonomia that he's become one of two docs in the country who specializes in treating it. (Dr. Daid Bell in Lyndonville, NY is the other.) I agree, he's wonderful.

Best of luck to you. Please let us know how the florinef goes. I'm thinking about adding midrodine (promantine) and I'd love to see how the combo works for you!

Julie

[thejohnsongang]

Julie,

Will be starting the florinef this weekend. I want to start while I have family with me, just in case. I will let you know how the combo works. I love the proamatine. I feel much better when I take it and have a little more energy.

As for Dr. Rowe...Yes he is great. I have been talking with my daughter's current pediatrician about getting her back down to John Hopkins to see someone. She is doing great with her food allergies, but lately she's been showing signs of pots. Dizzy, loosing her balance, tired all the time, hot sweats, being cold, etc. Her pediatrician is good, but doesn't like to refer you out unless they have to. It's taken months to get her a referal to an endo for the PCOS that runs in our family. Would you happen to have contact into for Dr. Rowe that you would share with me? If so you can e-mail me at thejohnsongang@adelphia.net.

Thanks for the post.

Nolie

[jenwic]

Since my blood pressure is still higher than I like, last night I decided to start cutting back on the Florinef. My dr. had said I could take as little as 1/2 a pill twice a day. I was terrified to cut back too quickly since my horrible experience so took 3/4 a pill last night instead of the whole pill I usually take. I figure I will do that for a week and then cut it back to 1/2 a pill.

Is that cutting back too quickly?

[DancingLight]

Dr. Rowe is in charge of the Chronic Fatigue Clinic at Hopkins, but that often encompasses Dysautonomias.

He did the groundbreaking study that distinguished b/w people with just CFS and those with CFS and NMH, by using the tilt test to show that there were two separate groups. Those with CFS and NMH needed to be treated for their NMH symptoms.

He is mostly a researcher, so as far as I know he is not accepting any new patients. However, I don't know if he would see your daughter b/c she had seen him before?

Emily

[Donna F]

Hi

I am on florinef, and at first all i had was weight gain, now headaches and my pressure is jumped up where all my life it has run very low. I have lowered my doseage to .1 since yest, so far still headaches and scared as i know that the doc said i just couldnt stop taking it, so if anyone can give advice on how to stop i guess i require something to keep up my pressure cause of the BBS but not with the side effects like u i have had prob and not sure what to do, and yea if u go to the er they will think u r having anxiety or something i dont bother. JUst curious of the diff side effects of florinef, versus other meds for pressure like midodrine??

Hope ur better

Donna

[pat57]

was on it, short while, taken off because my low bp went High and got headaches.

potent stuff

[Donna F]

I too am on florinef, and he started me in the hosp after putting my pacer in few mths ago, at .1mg a day in the morn. I did good for a while then around christmas was rushed to er , my pressure has always ran ext. low, around 80 or 90 over 40-60 tops, and then it was 140/93 which is high for me, mY electropshy. said that nor my headaches was from this, and increasedmy Bblocker, i saw more harm, so i have lowered my dosage from 1 and 1/2 flor a day to 1 for the last few days, still some headaches , but not as bad and my press is actually normal around 120/6o which to me is great. So I am gonna go with my new doc who is a dys. specialist. He wants to change my BB and poss my flor. I am hoping to be able to find a diff solution cause i have gained 25 lbs on florinef, and that makes me feel even worse. What made it so bad, my EP had the audasity to say stop eating so much!! ?God that was it for me. So I did this on my own, and guess need a new heart doc, that understands, hope u do well, some people do on the florinef, but take it slowly and realize that after a couple mths is really when we start noticing more of the high pressures, headaches , etc and also something u may want to discuss with a doc, is that florinef is better in the morn only, it works all day and sometimes taking it at night can interrupt ur sleep!

Good luck

donna