Derek1987 Posted January 10 Report Share Posted January 10 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). Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 10 Report Share Posted January 10 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. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted March 18 Report Share Posted March 18 @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 . Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted May 7 Author Report Share Posted May 7 On 3/18/2024 at 2:22 PM, Macho319 said: @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 . Wow. Crazy. Did they explain why? Quote Link to comment Share on other sites More sharing options...
Macho319 Posted May 14 Report Share Posted May 14 @Derek1987 No. Even though it can be a side effect no explanation was given by the Director of Heart Failure team at the Cleveland Clinic. No one has answers for anything that is happening to me. It's unbelievable. I hope you're doing ok. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted May 16 Author Report Share Posted May 16 On 5/14/2024 at 3:12 PM, Macho319 said: @Derek1987 No. Even though it can be a side effect no explanation was given by the Director of Heart Failure team at the Cleveland Clinic. No one has answers for anything that is happening to me. It's unbelievable. I hope you're doing ok. I feel like this. Nobody knows what's happening to me. Tonight I'm taking a sleep study to see if I have narcolepsy. I don't think I have that. I think the fatigue comes from my adrenal gland issues. But thats another thing they couldn't tell me about. They know they aren't producing enough aldosterone and renin but he was like "no idea what's causing this". So I'm left with no answers or remedies. Hope you are doing alright as well. This is very hard to deal with. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 20 Report Share Posted May 20 12 years now and counting, have yet to grow a second head so all good. Quote Link to comment Share on other sites More sharing options...
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