How long have you been on florinef?

[Derek1987]

I've been taking it for 3 years or so. My new autonomic doc says my adrenal glands need a break from it. I forgot her exact reasoning. Sorry brain fog.  Like it could mess my glands up permanently. There wasn't any test indicating this was a reason for me stopping it or anything. 

How long have you guys been on it? (If you're on it).

 

 

 

[Sarah Tee]

Hmm, I was not told this by an endocrinologist (who supervised first try) or a clinical pharmacologist and autonomic specialist (supervised second try).

They only mentioned keeping an eye on potassium.

I also referred to p.14 of this handout by Dr Peter Rowe. He doesn’t mention anything about needing to come off it, and mentions that people are likely to need it long term, as it is not a “cure”.

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

Having said that, I had a search online and a couple of places mentioned that it was dangerous to stop taking it suddenly after having taken it for a while in case your adrenal glands were producing less of what they usually do.

https://www.goodrx.com/fludrocortisone/what-is#warnings

But there’s no reference to read further. And this info is for people taking it for other reasons. And it doesn’t say what dose is likely to suppress adrenal function.

I wonder if Dysautonomia International could help? This might have come up in the Q&A at a conference.

[Macho319]

@Derek1987Florinef put me into acute heart failure preserved ejection fraction. It made me feel horrible! I knew it was the drug so I stopped it and retested and now I'm not in heart failure anymore. I also read heart failure is a side effect of Florinef as well .