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TERRI13452
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Can anyone tell me what the highest dose of Florinef is that they give to support the blood pressure? I am on .5 as I said before but am still symptomatic (less so

than before but symptomatic none the less). They mentioned adding Clonidine to the mix but I was just wondering what your experiences are. I know everyone is

different but am just curious. Thanks for the great welcome and support.

Terri :D

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Hi Terri!

I don't think there is an actual "maximum" dose to be given, although it is prefered to try to stay below 0.2mg as the higher the dose you receive, the more risk for unpleasant side effects. I think dosage depends on your response to the med and is very individual for each person. I tried florinef and was up to a dose of 0.3 before I had to stop. Didn't work well for me.

Hope that helps you a bit! Laura

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Hi there,

Just a side note about Florinef. It doesn't work if you don't increase your salt intake (and fluids of course). My endo has told me that I need to make sure that I eat lots of salt and fluids for the florinef to work. I do feel the difference when I don't do so....also it may be that it's not working right for you and you need another medication (discuss this with your Dr)

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Hi I am on .1 Florinnef twice a day along with 4 grams of salt tablets, and I also started Clonidine 2 weeks ago and caffiene. They put me into the hospital to monitor me while I tried the Clondine b/c people seem to either react great or terribly to it. When I was released from the hospital I started taking 1/2 Clon. in the morning and full one at night. The first day I got dressed and ready to go to work and starting feeling light headed so I took my pressure and I dropped to 68/41!! So the doctor obviously told me to stay home. Now I take the Clondine only at night so that if my pressure drops like that I am already laying down, it also seems to help with my migraines... Good luck!

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Hi there,

Just a side note about Florinef. It doesn't work if you don't increase your salt intake (and fluids of course). My endo has told me that I need to make sure that I eat lots of salt and fluids for the florinef to work. I do feel the difference when I don't do so....also it may be that it's not working right for you and you need another medication (discuss this with your Dr)

Andrea, Is this really true? My cardiologist never mentioned this and I haven't read anything about this is in the literature. I know increased salt and fluid intake on their own are frequently first line attacks against POTS etc. But I didn't know florinef wouldn't work if you didn't increase sodium and fluid. I'm on .1mg of florinef with no additional salt and, touch wood, it seems to have made a significant improvement in my life.

India

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I'm on .1mg of Florinef, my dr has me taking 3 pills in the morning then i have to take another 2 pills in the afternoon. And now he wants to increase it because we had to decrease the Midodrine was making me sick.

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I'm on .1mg of Florinef, my dr has me taking 3 pills in the morning then i have to take another 2 pills in the afternoon. And now he wants to increase it because we had to decrease the Midodrine was making me sick.

Thank you all for your wonderful replies. I am a saltaholic so that isn't a problem, also I drink a lot. Unfortunately with the gastric bypass, some things are taboo although I am just not normal in any case. (can't eat much but cheese and crackers and junk that isn't good for me (hmmmmm I had this surgery why???). I see the PMD on Thursday and hopefully we can figure something out with this. It is becoming more and more frustrating to feel like crap most of the time and have people tell you "how good you look". Anyway----enough pity party. Have a great night/day. Terri :ph34r:

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Hi

I have been taking florinef for a year now and having tried most other drugs available found that it is the only drug that works for me.

I now take 0.2mg daily but have taken as much as 0.3mg. 0.3 caused me to suffer side effects of headaches and nausea so I had to go back down so 0.2 isn't quite enough to control my syptoms but it does help and it is as much as I can take.

One bit of advice I can give is as you increase look after your stomach. It made mine really bad and I never suffer stomach problems. The best thing I found to do is break your dose down to 3 times daily and only take after food.

As for the link between salt and florinef you MUST increase your salt as you increase your Florinef. I believe (though my memory is not great and I am no doctor) that florinef is used to flood your capiliaries with fluid so that when your blood vessles diolate and usually your BP would drop you have extra blood there to fill the gaps so there is still enough blood to make it up to your vital organs and keep you up. If you don't have enough sodium then the fludrocortisone has nothing to 'cling' on to to pad out your blood and the extra fluid you take on will just come straight back out again having done nothing for you.

There was a clinical trial conducted in the UK earlier this year (sorry I cant remember the name of the guy but I will try to find it for you). He tested the effects of florinef, florinef + sodium and sodium alone. The study concluded that florinef was unsuccesful unless combined with sodium and it was found that the most succesful combination was 0.2mg Florinef with 6g sodium chloride though you could go as far as 0.3mg florinef with 12g sodium choride (thats 20 sodium tablets a day!!!). My cardio only found this research a few months ago and since then he has managed to get nearly all of his patients off the BBs, vasoconstrictors etc and just on to the sodium!

Another succesful combination for many (though not me) is Fludrocortisone with a vasoconstrictor.

Another thing to bare in mind is that Florinef is a much 'nicer' drug than many as it has been succesfully used for many years and has had lots of research done on its effects, unlike midodrine for example which is often perscribed as an alternative and hasn't really been researched properly-no one knows the long term effects.

As I say this is all in my opinion, I couldn't find the original research article and my memory isn't great so check it out properly before doing anything!!

Hope this helps

Good luck

Katie

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"One bit of advice I can give is as you increase look after your stomach. It made mine really bad and I never suffer stomach problems. The best thing I found to do is break your dose down to 3 times daily and only take after food."

My doctor warned me that florinef could upset my stomach, but that's pretty much true of all medicines really. Of course, being the peverse person I am, I actually experienced an improvement in my GI system on florinef. I'm wondering if that could be because drops in BP completely screw up everything else in your body. Whenever I had an autonomic storm, my GI system would go haywire. I'm sure it was probably due to the extra adrenaline that was pumped into my system as my body tried to right itself (I have POTS and adrenergic excess). Having started the florinef, I now have fewer attacks and hence my GI system seems near normal!

I should add that I DID NOT want to start florinef after reading such bad things about it on this forum. But I feel so much better since I did. I understand, however, that different meds are going to impact different people in various ways. As one wise contributor to this list said to me, "try it." I did and I am (so far) very glad that I did. I haven't had to miss a day of work since I started back in August (very unusual).

India

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Katie,

If you have the references to those studies I would love to see them. As far as I know, and have read, and have been told by my cardiologist, florinef acts by increasing your body's ability to retain sodium. That's why florinef is not recommended for people with heart failure or high blood pressure and is recommended for people who have a "salt-loss" disease. Before I started on florinef, my cardiologist explained that some of his patients take merely extra salt tablets without the florinef to help their POTS. He implied that taking extra salt with florinef would probably not hurt and might even help someone who was otherwise healthy, but that florinef alone with a regular diet should be sufficient. It's my understanding that most westerners already consume too much salt in their diet anyway.

I haven't increased my salt intake while taking florinef and it seems to be working just fine.

Maybe others more qualified than I can shed light on how florinef exactly works.

India

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Hi India

I have just emailed my doc to try to get that report. I'll let you know when I get it.

Good luck

Katie

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Hi India

I have been trying to get hold of that research article but can't get access as you have to be a doctor to get on the site. The guys name is 'Hainsworth' I'll keep trying but maybe you will have more luck finding it than me.

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I was on .6mg a day and was still having problems. Then he added 10mg of midodrine, that seemed to work ok for a while, but then I did not know that your blood pressure can go up when you lie down and I ended up having a stroke. I am also on pain medication which raises my blood pressure so they took me off of the florinef and the midodrine temporarily until I can get thriough surgery. Then they will probably put me back on one or both on an as needed basis.

Can anyone tell me what the highest dose of Florinef is that they give to support the blood pressure?  I am on .5 as I said before but am still symptomatic (less so

than before but symptomatic none the less).  They mentioned adding Clonidine to the mix but I was just wondering what your experiences are.  I know everyone is

different but am just curious.  Thanks for the great welcome and support.

Terri :)

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