Fludrocortisone for Postural Orthostatic Tachycardia Syndrome User Reviews

• Potsw...
• Taken for 1 to 6 months
• May 1, 2020

"Before this medication my heartrate was in the 160s upon waking and stayed that way everyday. I had severe anxiety from the adrenal dumps and was a miserable mess. I was labeled a hypochondriac with severe depression and anxiety even though this had only been going on for 6 months. I had 4 suicide attempts because I was so miserable and nobody believed something else was wrong. Finally my new Psychiatrist said they thought I had POTS. It took three Psych hospital stays. A dozen trips to the ER and one incredible Psychiatrist to save my life. I take .01mg of Fludrocortisone twice a day. My quality of life is almost back to normal. My heart rate rests between 70-100. I'm weaning off of Xanax and am no longer pegged as a hypochondriac. My depression and anxiety are minor and I am going back to school in the fall for my Bachelor's. This medication gave me my life and my sanity back."

• Jay...
• Taken for 6 months to 1 year
• June 25, 2019

Florinef (fludrocortisone) "I have been "sick" as long as I can remember. I passed out for the first time when I was 14. I've always had the "I feel like I have the flu, and I'm dying symptoms". I did not have a good quality of life. I was diagnosed with POTS and NMH (Neurally Mediated Hypotension) in April of 2018 and immediately put on medicine. The first medicine have me awful side effects, so I was switched to Fludrocortisone. This medicine has changed my life. I can not live without feeling like I'm sick all the time. The only times I feel sick now are when I forget my medicine, or I go too long between meals. The only negative side effect is, I've gained 14 pounds so far, which sucks, but it's better than the alternative."

• Mom
• Taken for 2 to 5 years
• October 16, 2020

"I’ve been on fludrocortisone 0.1 for almost four years. It’s the only thing out there that helps me not feel like I’m about to die everyday. I suggest not taking any probiotics with it .. probiotics weakened my dose. I do have to sleep at an incline and drink extra water. Should take potassium and magnesium with it as well, to keep your heart from racing at night - POTS / Dysautonomias"

• UK120
• Taken for 1 to 6 months
• November 25, 2020

"I experienced depression during the first week on fludrocortisone. Then the depression went away and my POTS got much better. It took about a month until I felt the full effect. I've only been on it for 5 weeks but I have not felt this good in a very long time."

• Jenn...
• July 31, 2019

"I was diagnosed with POTS (postural orthostatic tachycardia syndrome) back in 2001 it is now 2019 I have been on 0.01 milligrams of florinef and a beta blocker together ever since they have never failed me once. It's an excellent drug I have never had a side effects and I highly recommended and now my daughter is going through similar and starting to get flare-ups POTS and I'm almost hoping that they give her this medication as well because his works are wonderful day for me because her quality of life is not good at the moment"

• Lottie
• Taken for 1 to 6 months
• March 31, 2023

"Honestly one of the best treatments for the brain fog and exhaustion (though I've got to say overall my favourite has to be clonidine (but that's for the adrenaline surges)) - PLEASE TAKE POTASSIUM WITH IT though!! No one told me to and about a month in I started getting more and more palpitations, muscle cramps and twitching and all over body aches and migraines - I ignored it thinking it was just my conditioning worsening but after 2 months it was getting a bit unbearable so I looked it up and saw a suggestion to take potassium - I bought some supplements and only a couple hours later the pain and twitching had almost gone! So overall great drug but take potassium!!!"

• Weight...
• December 6, 2016

"Florinef has definitely helped the symptoms from POTS/Vasovagal Syncope. But what it has also done is create a steady weight gain to the tune of 25 lbs to which I'm miserable with. I've work with a nutritionist to prevent diabetes, I work out 5 times a week, and have not so much lost a pound of it. This drug has awful side effects for some of us, which for me is weight gain, and mood swings. I'm working to get off of it, assuming my adrenals don't crash from the prolonged use. These side effects of this medication for long term use are extremely dangerous and it shouldn't be on the market."

• yuri
• Taken for 6 months to 1 year
• May 10, 2022

"I've been taking fludrocortisone (Florinef) 0.1 mg, 2x per day, for 7 months. My body barely retains fluids, so I feel fludrocortisone was the perfect medicine for me. I suspect my POTS was caused by low blood volume. These meds raise blood volume and make my body hold onto salt and fluids, so it works wonders. I am almost symptom-free since I started taking this. Side Effects: I had a headache when I first started taking it. This lasted 2-3 days, and I think it was because I needed to adjust my salt & water intake. I also suspect these meds have made my acne a little worse, but the difference is barely noticeable so maybe not. I have not experienced any weight gain from taking this. I've actually lost a few pounds. It was almost impossible to lose weight before taking this, but I think it put my body "in balance" so my metabolism can function correctly. I eat almost 2x more than I did before without gaining weight. Results definitely vary."

• Ladiva
• Taken for 1 to 6 months
• August 9, 2018

"I had been having chest pain for months. Treated it with antibiotics twice and then steroids. Finally I saw my cardiologist who felt it was my out of control POTS. I went up to 0.2 mg and the chest pain went within a week. I am now down to 0.1 mg but I miss it I get the chest pain straight back. I also feel that my head is a great deal clearer. Less brain fog even though I had not been aware of it before."

• POTSie...
• June 25, 2015

Florinef (fludrocortisone) "I started taking florinef a few months ago and while I haven't noticed a difference, I believe it is keeping my symptoms from progressing. Before I went on it my body was on a downward fall but as soon as I started taking it everything was stable. It has made me gain about 5-10 pounds of water weight but it's not too bad. This drug along with my other medicine allows me to live my life better."

• Wheel...
• November 15, 2014

Florinef Acetate (fludrocortisone) "Amazing. No noticeable effect on one 0.1mg, but docs doubled dose to 2tablets ie 0.2mg and it's amazing. Can sit up, walk, and haven't fainted since 0.2mg started. Trialed going to 0.1mg and a day and a half later, was back to dizzy, faint, tachy etc."

• A j
• Taken for 5 to 10 years
• May 2, 2023

Florinef (fludrocortisone) "I have been taking fludrocortisone for about 9 years it is helping me a lot. I have episodes about once a every 2 months sometimes once a month, the way to describe how I look is that l look drunk. Once the episode is finished I'm in bed for 2 days I just need to lay down flat."

• POTSP...
• Taken for less than 1 month
• September 22, 2021

"I was on it for 2 weeks at 0.1mg, then 1 more week at 0.2mg. It really helped with raising my blood pressure to a healthy level and reducing POTS symptoms. Unfortunately, I had to go off of it (tapered gradually with doctor’s advise) because it caused depression, irritability, rapid mood swings, intense agoraphobia, and psychotic symptoms. (I am treated for PTSD and bipolar disorder and have been stable for over 2 years, so some of them weren’t new symptoms, but they were symptoms I hadn’t experienced in a very long time.) I’m normally really comfortable with toughing out side effects for the benefit of a medication, but I couldn’t tough those ones out. If you have a history of mental illness, or if you have a sibling or parent with mental illness, please make sure your doctor knows that and consider asking about alternatives. It’s a great medication for those who need it and it did really help with POTS, but the side effects were not worth it for me personally."

• Cortni
• Taken for 10 years or more
• November 28, 2021

"I have been taking fludrocortisone for over 10 years now it has been the only thing that does help me with my POTS. I take 1 tablet daily and two if I’m feeling worse which helps my blood pressure come up from its super super low days which are very common for me. I do have concerns always about the long term use of this and how it’s affecting my body. My doctors never seem to bring it up for monitor my blood work. Which I’ve read they are suppose to be monitoring closely with long term use. I do have bad insomnia from this medication and restlessness. I have other issues but you just never know if that the meds or the POTS. But it’s the only thing that helps me and I wish there was more they could do to help others POTS."

• Anonymous
• October 26, 2020

"I started using ludrocortisone for my POTS about 4 months ago and it has worked wonders for my POTS. On the contrary, it has made my hair fall out and break off. I’ve also got some acne now. I have never had acne before until this medicine."

• simpl...
• December 20, 2009

Florinef (fludrocortisone) "I developed a rash and after testing at the NY Medical College and Vanderbilt Center for Dysautonomias, we found my blood volume was not low (often the case with POTS patients) and the mechanism that florinef acts upon."

• Potssux
• July 24, 2017

"I started on Florinef a few weeks ago. I'm noticeably doing better but not quite able to fully function like before. I have good days and bad days. I started on 0.2mg. Going to see if I can increase and if that will help. I'd like to be able to go back to work."

• 123
• January 20, 2024

"I have been on fludrocortisone, 0.1 mg, along with a beta blocker for pots for about 15 years. I did not experience any adverse side effects. The combination of the two drugs definitely helped me feel better, with a reduced heart rate and less dizziness."

• SallyS
• Taken for 1 to 6 months
• July 21, 2021

"I am still on a low dose of this medication, so I can't say yet whether it is going to help my orthostatic intolerance (OI) and suspected low blood volume. In the meantime, I wanted to report the side effects on my sense of taste. In the first two weeks, I had a metallic taste in my mouth. In the second two weeks, I had a bicarb taste in the back of my throat/nose. Now I am also getting a reduction in my sense of taste. I can't taste sweet or umami very well. Orange juice and roasted vegies are okay, but everything else tastes cardboardy. I really hope that this side effect goes away, or the fludrocortisone starts working. Being unwell and also being hit with side effects and no benefits is hard. If the tablets were fixing my OI, I could probably live with the hypogeusia."

• Sarah...
• Taken for 1 to 6 months
• August 26, 2014

Florinef Acetate (fludrocortisone) "It's my life saver, I was bed bound and in a wheel chair before using florinef! Now I can do physio and live a almost normal life!"

• KimC
• Taken for 1 to 6 months
• September 5, 2014

Florinef (fludrocortisone) "Florinef has helped me out quite a bit. I'm not cured, but am better. I can walk up minor inclines without any problem. I am able to be up and active for longer periods of time."

• Anonymous
• August 21, 2011

"I have not been dizzy or fainted even once since the 4th day of taking Fludrocortisone and Sodium Chloride. Works great for me so far."

• Karen
• Taken for less than 1 month
• November 17, 2018

Florinef Acetate (fludrocortisone) "I been on the .01mg for about a month so far been great I haven't had anymore more dizziness"

• Anonymous
• August 10, 2010

Florinef (fludrocortisone) "I have taken this medicine along with Toprol-XL for a few years and it has helped A LOT! I think this medicine paired with Toprol-XL is great!"

• Anonymous
• Taken for 1 to 6 months
• March 12, 2013

"This medication has helped my Postural Orthostatic Tachycardia Syndrome quite a bit. I get less flare-ups of POTS with this medication!"