Is Anyone Currently On Florinef Here?

[Nauthiz]

If so how long have you been on it? What improvements have you noticed? Is your immune system any weaker while taking it?

[flop]

Hi,

I'm not currently taking Fludrocortisone (came off it by accident when the pills were switched to ones that had to be kept in the fridge - I was forgetting to take it all the time so my doc said to try without it).

When I first developed POTS I was very tachycardic and had low blood pressure all the time. On my TTT I had a heart rate of 170/min and BP 96/90. My cardiologist started me on Fludrocortisone (50 micrograms slowly increasing to 300 micrograms). I did feel a benefit but it came on slowly over the first couple of months. My BP went up slightly but my tachycardia wasn't as fast. Before the Fludrocortisone I was having a lot of fainting episodes (several times a day) without any warning. when the Fludrocortisone got working I changed to having lots of dizzy episodes but almost always with enough warning so that I could sit down and prevent a faint. It made a big difference to my quality of life.

I didn't notice any problems with my immune system and didn't get more colds than normal or anything like that.

Hope that helps,

Flop

[mkoven]

I've been on florinef .075 for a little over a year. I was reluctant at first, because I feared it would be like other steroids, which I generally react poorly to. It really pulled me out of an ans pit with terrible chest pains and inability to be upright. I"d love to not have to take it, but have enough else going on right now that I don't feel like messing with it. My bp is a little higher, maybe ten points on average, than before, but is also much more stable. Usually around 115/75. And I feel less like the floor is trying to pull me down. It made me a little jittery at first, but I no longer notice that. I don't think I"ve gotten sick any more often. I do worry that it might be thinning out my tissues--because I have eds, that's already a concern. but for now, i'll keep taking it. i talked to my eds geneticist about it, and she agreed that if it has allowed me to more or less function when before I could barely sit up, I should continue. There have been a lot of postings on florinef, as it is a commonly prescribed drug for us, so I recommend doing a search.

[mountain girl]

I have been on Florinef 0.1 mg daily each morning for about a year. I also take a beta blocker Bystolic 5 mg. daily and the Florinef seems to keep my bp from going so low that I was feeling bad. I have not noticed any change in my immune system response, but I was also concerned about that originally. Knock on wood, I have not been sick for at least a year except with the POTS anyway.