Topic: Florinef for POTS...what's your dose, steroid issue with Lyme, etc
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi all.
I have been diagnosed with a form of dysautonomia. I think I have POTS as well, but what I was diagnosed with officially was hypermobility (Ehlers-Danlos-like) and general dysautonomia. My doctor could tell I would fail a tilt-table test, so he didn't even make me "go through" it.
Anyways, I've tried Midodrine and it didn't help too much.
I'd like to try Florinef because it does help POTS, and the hope is that increasing my blood volume would help with some of my fatigue and just the general "unwell" feelings of dysautonomia and not getting enough blood in the upper portion of the body.
However, I believe Florinef is a steroid, in the same way that Cortef is (which can be a problem with Lyme, steroids). So I was wondering if your LLMD's are okay with you being on Florinef, and what your dosage is.
And also would be interested in any successes from Florinef. Thank you!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My 13 yr. old son has POTS and is taking Florinef. He was passing out on occassion so the Cardiologist felt this drug would help. So far, his dizziness, heart palpitations and blood pressure issues have improved.
His LLMD has not wanted to take him off of them and his treatment for Lyme and Babesia are going great.
Since taking Florinef his potassium has been running low. We have to work hard to make sure he is replacing what is being excreted by his kidneys due to the drug.
Hope that helps a bit...
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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posted
If you can not take florinef, it still may be helpful to increase the amount of sodium in the diet or even add salt to some meals. This tactic and herbal licorice have helped me quite a bit. I do not have POTS though, just nocturnal diuresis and sleep issues mainly along with Lyme, Babs and Bart.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
My llmd prescribed a low does of florinef. I had severe pots. I was passing out, diZzY with standing, etc. I'm also doing lactaid ringers on some days to help.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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WildCondor
Unregistered
posted
Florinef is NOT the same as Cortef and does not work the same way at all. Florinef acts on the kidneys to help your body retain water and have a greater blood volume, which in turn increased blood pressure. Usually .1 mg is what's Rx'd.
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi! I have autonomic dysfunction. It is a delayed form of Orthostatic Hypotension from prolonged standing or sitting upright.
I have tried Florinef, and it didn't help me one bit. Made me feel worse. I have also tried Midodrine, beta blockers, and they made me much worse. I am very sensitive to medication.
If the Florinef doesn't work for you, you might try Licorice Root.
I take Licorice Root. I use a strong dosage in my Green Tea, which I drink several times per day.
I also increase the salt and water and potassium.
I still can't stand or sit upright very long without elevating my legs significantly, but the Licorice Root helps me to feel like I am NOT dying, but alive, instead.
Just wanted you to know that there are other options, if you are med sensitive.
Best Wishes.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I have been on florinef for almost 4 years. Start slowly and salt load with it. I drink organic broth or mix sea salt into water. Pots is the pits but you can play around with things and see what helps. I have yet to see an improvement with lyme treatment - what about for you>
Posts: 37 | From ma | Registered: Feb 2010
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've been on Florinef for over 8 years. At first I went up very gradually with it, and I'm not one who usually needs to do that, but with this I did.
I am now on a lower dosage than when I first began treating Lyme. It's pretty much the lowest dose you can get in one pill, without cutting it.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Florinef was a godsend to us. I wouldn't hesitate to use it.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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