My Doc Just Prescribed Florinef

[Angelika_23]

Hello,

Due to the latest issues, my doctor has decided to put me on Florinef. I am wondering about this decision. I read on the DINET website that people with hind brain compression should not use it. What is hind brain compression? The reason I ask is that I possibly have a Chiari I malformation and wonder if that could contribute to hind brain compression???

Any thoughts or input would be great!

Angela

[Sophia3]

I do not want to get into the whole Chiari debates as some neuros can read ANYTHING into an MRI but whether or not you have true neuro Chiari symptoms is another deal.

so I would not worry about that for now.

THAT SAID, whatever dose of Florinef they give you, it is suggested to start out with a fraction. I am no doctor but headaches can be a common side effect of Florinef. Years ago in the CFIDS Chronicle, (with the type of CFS TIED to ANS issues) they found pts sensitive to meds could not handle one pill of Florinef.

I read to start 1/4 tab and take for 3 or 4 days, then add a second quarter, and take a few days. That way you slowly work up to one pill in about 12 days. THEN you start to keep an eye on symptoms and if it is helping you or not. My old doctor at the time was ok with my baby doses but many docs want us to do a ONE SIZE FITS ALL dosing.

Many docs will poo poo the lower dose but I HAD to try it this way. I finally was able to tolerate Florinef but it did nothing for my case.

Good luck to you though. I also only try a new med during doctors hours or pharmacy hours in case I have a reaction.

Also, once you build up to a 1mg dose a day, NEVER stop the drug suddenly but wean off of it. Discuss with your doctor.

I am no doctor and only post the above info for "entertainment purposes".

[Angelika_23]

Thanks Sophia!

I go see a neurologist on the 19th to see what is going on. They think I am exhibiting some neuro symptoms, but not sure what they are due to yet.

I haven't picked up the prescription yet, but we'll see what the doctor put as the dose. I suspect that he is not going to slowly work me up to it.

Thanks for the info

Angela

[flop]

Hi Angela,

I don't have any information on the Chiari / hind brain compression theory, sorry.

When I started on Florinef my cardiologist prescribed 50mcg daily to start with (half of a 0.1mg tablet). I stayed on that dose for 3 weeks then went to a whole 100mcg (0.1mg) tablet. I increased every few weeks by half a tablet until I was on the maximum dose of 300mgc (0.3mg) daily and I have stayed on that dose for the last 2 years without any trouble.

Before starting florinef please ensure that you are drinking pleanty of water and taking a high sodium diet. The florinef needs your body to have enough water and salt so that it can work properly and boost your blood pressure.

Hope it helps with your symptoms,

Flop

[Angelika_23]

Oh boy,

My blood pressure does not need boosted. It always runs a bit high now...

Thanks,

Angela

Edited June 13, 2007 by MightyMouse
removed extra quotes-please use the "add reply" button and not the "reply" button

[Sophia3]

ok...if your BP tends to run high, I would NOT take the Florinef at all and am confused at why your doc would suggest it????

Hmmm.

[Angelika_23]

I may be reaching here, but I think his nurses aren't passing on all the information to him. Everyone in that office is tired of hearing from me. And I am tired of talking to people who don't listen.

I called him because I am tachy again, anytime I am standing I am at least 120 almost immediately. I'm tired ALL the time and my chest hurts. He said the florinef will help me retain sodium and help those problems. What I don't understand is, why the Midodrine won't work anymore. It worked fine for almost 3 mos... I'm also having trouble just standing for any length of time, I am starting to fall, like my legs just give out from under me.

Angela

[goldicedance]

Have you tried Mestinon? That works for some of us.

[lthomas521]

Did the doctor run a blood volume test before prescribing the Florinef? Dr. Bell described a case in which a patient with a severe volume deficit (not enough blood to go 'round) nevertheless had high blood pressure. When they gave that poor soul some intravenous fluids, the pressure came right back down to low normal. But they had just measured his blood volume, so they knew what they were dealing with.

Do you have a blood pressure cuff? Maybe you could monitor your blood pressure lying down, sitting, and standing up several times a day for a few days before starting the Florinef.

If you think that your doctor's nurses aren't passing along information properly, you might consider writing your questions to him in a letter. Indicate at the bottom of the letter that you are sending a carbon copy of the letter to someone with a different surname than yours. It could be your sister or your best friend, whatever. But the people at the doctor's office might think it is a lawyer.

One possible reason for the midodrine to be failing you is that your POTS is flaring up. By any chance, are you having a flareup of allergies right now? That's the usual culprit, in my experience.

[Angelika_23]

He did not run a blood volume test.

I do have a cuff, I take my BP 4 times a day and log it, that's how I know it runs high.

I do have seasonal allergies, I am on Zyrtec for them, they aren't so bad right now.

Thanks for the input, I appreciate it!

Angela

[doctorguest]

I would not worry about "possible" Chiari and the use of Florinef. Additionally, it is not necessary to run a blood volume test in order to start Florinef. A simple measure of your blood volume and sodium status is a 24-hr urine sodium test which is easy and inexpensive. How high does your blood pressure run? If it's above 140/90, I'd discuss the issue of Florinef further with your doctor. If you have tachycardia along with slightly elevated blood pressure, beta blockers or calcium channel blockers may be an excellent choice in your case.

[MightyMouse]

Hi Angela, I just wanted to chime in to request that you use the "add reply" button located at the top and bottom of every thread. When users use the " "reply" button, it places long strings of quotes on the page that make it difficult for readers to follow. Keeping the pages streamlined really helps those of us who have trouble concentrating.

Thanks.

BTW, I took florinef for years without any problems at 0.1 mg. I then went off of it for some testing and was never able to restart it due to my bp going too high--probably a bit of an age related issue for me as high bp runs on my dad's side.

Nina

[Angelika_23]

Thanks Nina,

However, while I understand what you are saying abou the replies, I thought it was proper etiquette to hit "reply" when replying directly to a person, whereas using "add reply" was appropriate when just adding a thought to the thread.

Regardless, if you look, the last time I replied, I did not use reply, I used add reply because I was being lazy. Belonging to several forums can be nervewracking, all of them have their own rules and preferences. I will try to accommodate.

Did the Florinef help you? Or did it seem to make a difference at all?

Thanks,

Angela

[MightyMouse]

Hi again,

Sunfish has done a nice job describing all the useful things new members should know about our forum.

http://dinet.ipbhost.com/index.php?showtopic=5555

Yes, florinef helped me for many years and I wish it still worked for me. Nina

[Sophia3]

Angela

Do not feel badly..i thought you had to hit QUOTE to QUOTE a previous post.

I never knew the diff between reply and ADD reply. If we have QUOTE, why do we have another place to quote?

It is TAXING to read a lot of quotes though unless somebody edits them down to ONE sentence.

I am a fan of SAVING energy and reading like Nina suggested.

Hope you can get some help in your Florinef decision/confusion.

[MightyMouse]

Sophia, I can't change the buttons or where the are stationed--it's part of the forum's software that's provided by the hosting company. Personally, I'd remove the reply button altogether if I could.

Now back to your regularly scheduled programming...I mean... postings... Nina

[flop]

Thanks to everyone for trying to post without quotes - it does make a huge difference when you are trying to read through a lot of threads. I find reading very tiring so the less duplicating the better for me.

I realise that the layout of the board is fixed by the hosting company and whilst it might not be how we would like it, I am just so grateful that the forum exists at all. Hopefully you'll get used to the DINET forum user guides and get as much benefit from this site as I have.

Flop

[Angelika_23]

Hello,

Does anyone know if Florinef can cause you to be tachycardic? I mean, more than usual? Just wondering because I took it today, and about an hour later I felt my HR take off. I feel better now, but it was pretty bad there for a while. I tried laying down, but I kept feeling my heart thumping. I hate it when that happens.

I called my doc from pulm, and asked him to get me a referral for another doc to help me with POTS. I want to get a second opinion on my current treatment, and if something else might be going on as well. My next appointment with my current doc is four months out, and that's just too long while I am so symptomatic (I think). I have been off work two days now. Since I can't walk very far without my legs giving, I just don't know what to do. I don't understand this at all.

I went to see my PCP, and he told me he doesn't believe in POTS, that I am clinically depressed and need medication and counselling.

This has been a very bad day.

Angela

[doctorguest]

It saddens me to hear that given the current knowledge and medical training, a physician can still "not believe in POTS", like it's some kind of 'fairy tale' In this case, my advice is for you to print a copy of review articles on POTS by Dr. Low and Dr. Grubb and give these to your PCP in person. Afterward, find another PCP who is open to learning "new material".

[Sophia3]

Angela

I am so SORRY to hear that about your PCP.

I think Doctoquest gives you good advice.

Good luck. It sounds like you are in a very tough place right now.

This hot weather is NOT helping.

Sophia

[MightyMouse]

I don't know if florinef is provoking tachy for you, but that wouldn't be a "typical" response-- heat and humidity, along with your general health that day (did you sleep enough, eat on schedule, and have average stress?) can impact your POTS symptoms rather quickly. Florinef takes days to build a blood level in your system--that doesn't mean is "isn't" the florinef, it's just a less like suspect than the daily things your body faces.

If after getting enough sleep, eating well, etc., your tachy doesn't get back to "your" normal, you should let your doc know.

[wareagle]

Angela,

I take florinef... but only 1/4 tab a day. I've been on this dose for a couple of yrs. now...just recently started adding another 1/4 tab. at night every couple of days. For ME I can't tolerate anything higher...not even 1/2 tab. I would get a bit tachy. and paniky when trying to take a higher dose but it would pass pretty quickly and then I'd just be really tired and out of it. I definately benifit, even from this small dose, and unfortunatly I don't think I'll ever be able to increase it too much. Just keep in mind everyone will react a bit differently to these meds. and sometimes even a small dose that wouldn't typically be seen as "theraputic" can help.

Welcome aboard...I hope you find lots of support and comfort here!

[delphicdragon]

Angela-

I tried Florinef a while back and I have a few pills to take around the time of my menstrual cycle because my BP drops out around then. I would recommend starting off at a 1/4 tablet (they are really small- so good luck cutting it up ) My hands swell up really bad on it and therefore, I can't take it. When I did take it, it was a miracle drug, I had energy (and a sex drive). I'd give it a shot, with a really low dose at first to see if you can tolerate it.

Sara

[Angelika_23]

Thank you everyone, I really appreciate you. I am really feeling pretty alone now, if I didn't have this place to come to I don't know what I would do.

My pulm doc called me, he is going to try to locate an EP doc in his hosp that is familiar with POTS and that can maybe help me. He said his secretary should call me tomorrow with a tentative appointment date. I really needed good news today, and that phone call was a relief to me.

I tried to go to work today, had to do a two hour training session and it set me off again. Apparently, just talking for an extended period of time (even while sitting down) is exhausting to me and causes symptoms.

Thanks for all the advice!

Angela

[Donna F]

Angela

I will add this I have been on florinef since Oct when they put my pacer in and it works but i will say I have gained from 135 lbs to a lovely 170 so i tried to ween myself and did and my pressure dropped to the 30s, so back on it and not happy, but however if ur pressure isnt low i may recondsider it is something that they normally use for too low pressure. But just wanted to warn there are side effects, i hope u find the right meds

Donna F