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Questions About Florinef, Electrolyte Packets & Water Loading


babettess
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Hi Everyone,

I am so blessed to have found this forum. Some days all that gets me by is knowing that someone out there feels the same way I do. I sure wouldn't wish this on anyone-but it does help to know I'm not crazy with all my weird complaints. My husband doesn't understand at all and talking with him usually ends up stressing me out. He does help take care of me, but he is clueless when it comes to understanding what I'm going through.

On to the questions--

My cardiologist(who has very limited knowledge about POTS) wants me to start taking Florinef. I have very weird reactions to most medicines and usually only take a fraction of the usual doseage. He assured me that it shouldn't cause me to have any side effects unless I am allergic to the preparations with which the pill is made. Then he told me that he ordered the smallest doseage available. He told me nothing else about the drug. Well investigator that I am, I find out that the drug lowers potassium and that electrolyte levels need to be checked periodically. I have had a potassium defiency in the past on several occasions and this is in my chart. He told me nothing about needing blood work. Also, I found out that the Florinef is a form of cortisone. Well the last/only time I ever took a form of cortisone was in a shot my family doctor gave me to get rid of a rash/virus that I had. I had a weird reaction to it and felt "high" until it wore off and then I crashed badly with a high heart rate, anxiety and extreme shakiness. I picked up the prescription and the pills are scored for breaking so a lower dose is possible. ****I am not starting the medicine until I go to Cleveland Clinic the begining of March and get their opinion.

So my questions are........

Does Florinef cause the same side effects as cortisone?

How soon does it start to work? Is it immediately or does it have to build up a level in your blood?

Where can I get some of the individual electrolyte packets that have been mentioned?

Does water/salt loading make you feel better immediately or do you feel their effects later-like the next day?

Do compression hose make you feel better immediately or do you feel their effects later?

Thanks for all your advice!

Babette

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Where can I get some of the individual electrolyte packets that have been mentioned?

I use Propel packets, and I buy them at Wal-Mart

Does water/salt loading make you feel better immediately or do you feel their effects later-like the next day?

I feel the benefits of water and salt loading within a few hours or a day, but only if combined with extra rest. Water and salt alone don't get me out of a crash.

Do compression hose make you feel better immediately or do you feel their effects later?

Compression hose don't exactly make me feel better, they just lengthen the amount of time that I'm able to be upright without crashing. I don't feel better when I put my compression on, but I feel "normal" longer. For example, if I were to go out in my wheelchair without stockings I would be okay for maybe 30 minutes before I would be too nauseated, dizzy, and brain fogged to stay in my chair. My body would be screaming to lie down. If I were to go out in my wheelchair with stockings, I might be able to be out for 2 hours before my body was screaming to lie down.

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Thanks Rachel,

I will look at Walmart and pick up some of the packets. As far as the water/salt loading & hose

I just can't seem to "feel" the difference.

Thanks so much for your help!

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Hi,

You can do a search on electrolyte packets on the forum for previous discussions. My favorite is Electromix packets the are Lemon Lime with no sugar, but also have no salt (you can add your own). I like the no sugar aspect, the flavor, and it has helped many migraines and rough days for me. Gatorade comes in packet form. Beware many of the packets have artificial sweeteners, so if you don't tolerate them you have to read the ingredient lists.

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Guest tearose

I use the electrolyte packets used for kids since I can better control the amount I need. They are made by Ross or Gerber.

Compression was documented in me at the Mayo clinic to lower my heartrate. I speak and think better when my heart is not at 150bpm.

Also, Compression makes me actually feel better. I can feel the difference however I also have lymphedema in my left side so it may be partly the reversing lymph flow that feels good.

tearose

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