Fludrocortisone for Dysautonomia User Reviews
Brand names: Florinef, Florinef Acetate
Fludrocortisone has an average rating of 5.1 out of 10 from a total of 8 reviews for the off-label treatment of Dysautonomia. 25% of reviewers reported a positive experience, while 38% reported a negative experience.
- simon...
- Taken for 1 to 6 months
- November 6, 2013
"After being a serious athlete my whole life and winning 10 k races last spring, I suddenly developed autonomic dysfunction (Dysautonomia) about two months ago at age 66. I am taking 0.1 mg Florinef per day, half before breakfast and half around noon. I am functioning much better with the medication. I also drink extra liquid and two 11 oz cans of V8 juice (920 mg Na per can) in morning. I have been able to continue working full time as a professor, something that I would not have been able to do without the medicine. Swimming is my only good option for aerobic exercise, so I am doing laps for 30 min 4 or 5 days a week."
- Middle...
- Taken for 5 to 10 years
- February 18, 2020
"I've taken fludrocortisone for almost 10 years. It helps a lot with orthostatic hypotension. Questionable impact on breathlessness with exertion or mental fogginess. It does require monitoring blood pressure. The medicine can cause BP to be above normal, healthy levels."
- KDW
- May 1, 2022
"Taking fludrocortisone for dysautonomia after Covid. I’ve noticed skin changes in texture. Swelling in my hands wrists face and legs. Discoloration of my skin from red to almost purple blotches. Bruises?? I’m soooooo itchy and my skin is so dry. I’ve also developed bleeding gums when I brush my teeth I’d almost rather deal with the dysautonomia"
- Mr mi...
- Taken for 1 to 6 months
- June 30, 2020
"Started fludrocortisone .1mg 1/2 pill twice per day, first dose at breakfast then again around lunch. Stops the dizzy spells, orthostatic hypotension and lightheadedness while standing extremely well but did increase resting BP from picture perfect to high normal. It doesn’t do much for fatigue and I also take with hydrocortisone for the adrenal insufficiency."
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- Sarah...
- Taken for less than 1 month
- July 4, 2021
"I have orthostatic intolerance, with suspected low blood volume and dysautonomia. I just wanted to share an odd side effect of fludrocortisone: it gives me a bicarb soda taste in the back of my throat and it also gives a bicarb soda smell to my faeces. I am only on a half dose (0.05mg) so far because my doctor wants to be very cautious, so I can't say whether it is helping with my OI symptoms. In the first week of taking it, I had a metallic taste in my mouth and a slight nausea, but this went away. Now got the weird bicarb effect!"
- Brave...
- Taken for less than 1 month
- June 16, 2023
"This med helped my dizziness and lightheadedness significantly. I was worried about the weight gain but it's maybe a few pounds and it's water weight. I take .1 mg daily. During my period I take .2 mg because of the blood loss. I normally get bad side effects from meds but this has been fine. Just had a headache the first week. Don't be afraid to try it!"
- Lulu
- Taken for 1 to 2 years
- December 24, 2018
"I took this drug for around 1 year. I am in my early 20s. While taking it I developed pneumonia and chronic yeast infections. Awful experience. Don't take it"
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"Some people have wonderful results with this medication, but I am not one of those people. So please take this with a grain of salt. I was very hesitant to take this medication because of the long list of side effects. Nonetheless, I gave it a shot and it did not end well. Over my three-month trial, I gained 12+ pounds and developed edema, shortness of breath, and insomnia. I just stopped the medication and am already losing weight. I have always had a small frame so it was particularly painful for me. I jumped for joy after seeing my feet shrink back to their normal size. I wish that doctors didn't downplay the side effects. I'm writing this to warn others and to encourage you to ask questions before starting."