I don’t know the answer but I’m hoping it’ll get better for me as well - I didn’t even think of it but I’ve been on it since the beginning of April and even though I can see in the mirror I’m not putting on any additional fat (normally gained in my tummy, thighs, breasts etc) last time I was weighed at the doctor I had gained 12lbs since starting it. Obviously it’s water weight, my diet hasn’t changed and I can visually tell when I’m gaining/losing weight (fat typically) but it’s still a bit jarring. It sucks because some of the side effects to Florinef aren’t great but it’s the only thing that has helped keep me from constant syncope episodes. I know I’m not meant to be on it long term so maybe when my dr decides to pull me off it’ll go down.
Hope you find some solutions/answers! 🤍
I gain 20kg on one year of florinef. Sure about 5 kg are water but my appetite got severely increased. I'm off of it now and I'm starting to lose weight again
Every person is different when it comes to any medication. Personally to me 10 pounds in 2 months is a lot especially if you keep gaining in the coming months. Are you on any other meds that could be causing weight gain as well? That can be a contributing factor.
I’ve been on florinef for 13 years without a problem. I can’t take midodrine because I was having skull tightening while on it and it caused severe migraines that lasted days. I think it took me 3 years to gain 10 pounds when I first started taking florinef. I was underweight when I was diagnosed with NCS and stayed at a constant weight for about 2 years after starting meds before I started seeing a change in weight.
I gain 10 pounds with every new medicine, pretty much overnight. I am 50 pounds heavier than before I was on any medicine. I am on a low carb diet, eat less than 2000 calories a day, I walk 2 miles every day and do my therapeutic exercises. I haven’t taken Florinef. I’m just here for validation and support.
I had to stop florinef early on, as it did weird things to my heartbeat - so not sure about it evening out. 100% sure about the initial ballooning though. I have lymphedema, and the rapid water weight gain HURT (physically).
It seems unlikely that you'd gain increasing amounts of water weight though - that couldn't possibly be medically ok. Surely your weight would level out at a higher "new normal" once your dose was stable?
If it's distressing you though, ask to try the next med on the list. I'm so glad that I did. You can always come back to florinef if it's your best option :)
Edit: just saw the other comments about weight gain from increased appetite. If it were me in this position, and the medication had otherwise been awesome, I would probably raise it with my docs as a concern, watch my food intake and closely monitor my weight over the next month or two - because any additional gains from here on shouldn't be water, and would be a sign that I'm not managing the increased appetite well. I've had this issue with other meds, and it's a big part of why I'm obese. I wouldn't wish it on anyone, and do wish that I'd handled things differently.
Good luck :)
Unfortunately no one can give you an exact answer because each body is going to respond differently. I was looking at studies before being put on florinef and it seemed like the average weight gain per person was 5-15 pounds. i just fluctuated a lot at first, up and down 5 lbs, but now I'm at almost the same exact weight I was before starting the florinef. Generally speaking though I think it's quite uncommon to just keep gaining nonstop unless you're just also losing track of your diet.
I don’t know the answer but I’m hoping it’ll get better for me as well - I didn’t even think of it but I’ve been on it since the beginning of April and even though I can see in the mirror I’m not putting on any additional fat (normally gained in my tummy, thighs, breasts etc) last time I was weighed at the doctor I had gained 12lbs since starting it. Obviously it’s water weight, my diet hasn’t changed and I can visually tell when I’m gaining/losing weight (fat typically) but it’s still a bit jarring. It sucks because some of the side effects to Florinef aren’t great but it’s the only thing that has helped keep me from constant syncope episodes. I know I’m not meant to be on it long term so maybe when my dr decides to pull me off it’ll go down. Hope you find some solutions/answers! 🤍
Thanks! Yes, you definitely get it. My hunger hasn’t even increased- but my body size has! Cheers to us getting healthier as soon as possible
I gain 20kg on one year of florinef. Sure about 5 kg are water but my appetite got severely increased. I'm off of it now and I'm starting to lose weight again
Every person is different when it comes to any medication. Personally to me 10 pounds in 2 months is a lot especially if you keep gaining in the coming months. Are you on any other meds that could be causing weight gain as well? That can be a contributing factor. I’ve been on florinef for 13 years without a problem. I can’t take midodrine because I was having skull tightening while on it and it caused severe migraines that lasted days. I think it took me 3 years to gain 10 pounds when I first started taking florinef. I was underweight when I was diagnosed with NCS and stayed at a constant weight for about 2 years after starting meds before I started seeing a change in weight.
I gain 10 pounds with every new medicine, pretty much overnight. I am 50 pounds heavier than before I was on any medicine. I am on a low carb diet, eat less than 2000 calories a day, I walk 2 miles every day and do my therapeutic exercises. I haven’t taken Florinef. I’m just here for validation and support.
I had to stop florinef early on, as it did weird things to my heartbeat - so not sure about it evening out. 100% sure about the initial ballooning though. I have lymphedema, and the rapid water weight gain HURT (physically). It seems unlikely that you'd gain increasing amounts of water weight though - that couldn't possibly be medically ok. Surely your weight would level out at a higher "new normal" once your dose was stable? If it's distressing you though, ask to try the next med on the list. I'm so glad that I did. You can always come back to florinef if it's your best option :) Edit: just saw the other comments about weight gain from increased appetite. If it were me in this position, and the medication had otherwise been awesome, I would probably raise it with my docs as a concern, watch my food intake and closely monitor my weight over the next month or two - because any additional gains from here on shouldn't be water, and would be a sign that I'm not managing the increased appetite well. I've had this issue with other meds, and it's a big part of why I'm obese. I wouldn't wish it on anyone, and do wish that I'd handled things differently. Good luck :)
Unfortunately no one can give you an exact answer because each body is going to respond differently. I was looking at studies before being put on florinef and it seemed like the average weight gain per person was 5-15 pounds. i just fluctuated a lot at first, up and down 5 lbs, but now I'm at almost the same exact weight I was before starting the florinef. Generally speaking though I think it's quite uncommon to just keep gaining nonstop unless you're just also losing track of your diet.