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Florinef Works Better Over Time?


jangle
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My neurologist is rather conservative and is reluctant to increase the dosage of Florinef from .1 to .2 per day. She's afraid of the corticosteroid effects of Florinef, however I've calculated it and .2 mg of Florinef would be equivalent to 1/12 the corticosteroid activity of 5 mg prednisone - the lowest dosage of prednisone. Symptoms of diabetes etc from corticosteroids aren't typically seen until one gets to the higher dosages of prednisone, like >30 mg.

But anyway, even on this .1 mg/d I've noticed that I'm getting more improvement as time goes on. It's now my 5th week on the medication and I'm better symptomatically then I was in the beginning. I'm keeping relatively the same water + salt intake.

I was wondering if other people noticed the same thing with Florinef? Why is there a time delay? It's not like I'm getting additional aldosterone hormone. I wonder if the body is adjusting to higher and higher blood volume.

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I can't speak to any medically or scientifically significant findings, but anecdotally that seems to be true in my case. I was on Florinef before for a few months and it did not seem to make a huge difference. I have been on it for about a year now and my blood pressure seems to be a lot more stable than it ever has been. My water and salt intake have not increased drastically.

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I've seen some reviews of fludrocortisone that seem to indicate that it's effects take hold predominately around 6-12 month period, so that might be what you're experiencing as well. Makes me wonder if I should just stake out at .1 mg and see how I do over time. I'm not really getting any side effects/edema at this level.

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My son initially was on .2 mg daily when he was 14. It worked really well and the doctors thought a lower dose on him might have been as effective, so we took him down to .05 and he was getting dizzy. We found the perfect dose for him was .1 mg, but .2 mg didn't hurt him. After being on it for 2.5 years with no dizziness he was taken off it and the dizziness has not been much of an issue since.

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I found that the florinef did work better over time for me. Also, I don't think you can compare fludrocortisone and prednisone. Prednisone is completely glucocorticoid but fludrocortisone is small part glucocorticoid but mostly mineralocorticoid which works differently on your adrenals (amongst other things).

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I found that the florinef did work better over time for me. Also, I don't think you can compare fludrocortisone and prednisone. Prednisone is completely glucocorticoid but fludrocortisone is small part glucocorticoid but mostly mineralocorticoid which works differently on your adrenals (amongst other things).

I didn't make clear what I was comparing. In the instances of diabetes and other heinous side effects induced by steroids, this is generally attributed to happen through the glucocorticoid activity. I was comparing these two dosages.

.2 mg Florinef has 1/12 the glucocorticoid activity as 5 mg prednisone which is already a low dose of prednisone.

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Jangle,

I saw my biggest improvement from Florinef during week 5. Its interesting that you are noting a similar experience. The improvements were huge for me at that point. It seemed to take that amount of time to work, for me anyway. I'm actually debating whether i need a dosage adjustment again. I started at 0.1 for 4 weeks, but found bloating etc to be an issue, so I cut back to 0.5. I've been having some backsliding of symptoms so it is possible that amount wasnt enough to maintain the volume level over time (???).

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My son initially was on .2 mg daily when he was 14. It worked really well and the doctors thought a lower dose on him might have been as effective, so we took him down to .05 and he was getting dizzy. We found the perfect dose for him was .1 mg, but .2 mg didn't hurt him. After being on it for 2.5 years with no dizziness he was taken off it and the dizziness has not been much of an issue since.

When your son was on the Florinef did he increase his salt+water intake as well? Is he still maintaining the high salt + water?

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Jangle,

He was on it from June 2009 until September 2011. It was the first medicine he took once he got the correct diagnosis of POTS. It took away his dizziness and it is now only an occasional issue. He takes Thermotabs for salt increase and increased water as well. With the nausea he has, I know he doesn't drink as much as he is supposed to.

Christy

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Florinef started 'working' right away for me.

Shortly after I started taking it I got frequent BP spikes and edema. I've gradually reduced my dose from 0.2 to 0.05 mg a day and for now my BP is back to normal.

I can't really comment on improvement on dizziness or lightheadedness as I've never dealt with any of these.

As far as the corticosteroid effects of florinef, they are almost insignificant - the article below contains a comparison chart of corticosteroids, the equivalent doses and their potency.

http://www.endotext.org/adrenal/adrenal14/adrenalframe14.htm

Maybe you could print this and share it to your neurologist?!

Alex

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Though I'm not sure, I recall something like 2 weeks to a month for florinef, but not much longer than that. My dr told me not to increase salt/water with florinef, but after researching and reading old posts I think that is what you are supposed to do. I found that increasing it made my florinef more effective. You may want to consider that before increasing your dose, especially if your dr is resistant. You could also ask for an intermediate dose like .15mg/day.

My understanding is that florinef is not as harsh of a steriod as prednisone, so I am not sure they are comparable. Though florinef has heavier side effects/more potential long-term effects than other POTS drugs. You just have to balance how much it improves your functionality vs. the potential risks - and that is individual to each person.

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