FLUDROCORTISONE (fluorocortisol, florinef)

[bree]

Hi

Really looking for advise about fludrocortisone. I have been offered this to help with my pots after midodrine made me feel worse. Just so worried about side effects like thinning skin/bones, headaches (get really bad ones anyway) and the weight gain and hirtusm ( have polycystic ovaries so this is a problem for me). Can it causes a lot of nausea.

I hope to only be on it short term anyway, until POTS calms down. Do feel I need to take something as every day at the very least I am lightheaded/nauseous and its really affecting my life.

Does it help with the fainting/near faints, tiredness, racing heart etc.....

Love to get some feedback. Have an appointment to see GP next week.

Thanks

Bree

[loosebones]

Bree how did you get on with the fludrocortisone?

I was started on it a month ago and have noticed some side effects that I don't really like.
The first one is that I'm getting terrible night sweats and waking up many times in the night drenched in freezing cold sweat and where I've been lying is just one huge puddle. I'm almost having to change the bottom sheet on my bed on a daily basis - last night I ended up sleeping on a towel I'd got so wet.
The second side effect concerns my stomach - it has seriously slowed down and the last week I've been living on double my laxative dose and still been seriously constipated. I've also been bloated and having bad stomach cramps after I've eaten.

Does anyone know if these side effects will lessen or worsen? Should I be speaking to my GP about it?

[Eloise]

To me it sounds like POTS symptoms getting worse rather than side-effects of the flufrocortisone. I am at a loss how to help further though.

[star gazer]

Hi loose bones, Son has been on fludro for 5 months now, side affects initially were bad headaches (now settled) a little weight gain ( very skinny anyway and was below bmi) ongoing side effects acne and low mood ( difficult to judge that one tho as he can be prone to low moods). heartrate has come down a bit and he has fewer issues with syncope, but as the heartrate is still tachy I am going to ask about Ivabradine which was recomended by St. Mary's Paddington where he had his tilt table done.

The symptoms you describe in your post are the same as tose that I suffer on a daily basis, I am not on fludro< I take midodrine, and my son has not really had sweats he does sleep with a fan on everynight though. He doesnt have the stomach problams that you describe but has said about a little costipation but not requiring interention, just additional fluids.
sorry I can't be of further help but it could be that it is not the fludro but something else like a low lying virus or as Eloise says a change in your pots.
love
sgx

[sheppeyescapee]

How long should I wait before I know if it is working? I've been on it for a few months now and I've seen very little improvement. I'm having less faints but still a lot of near faints and am still tachy a lot of the time. The guidance from NHNN when I went to my appointment was I could titrate up to a certain point so I still have 1 more increase I can have. My follow up appointment isn't until July.

I need to get in touch with NHNN I think as I'm due to have surgery in the next few months and I need to find out if I have to come off it before I have surgery or if I'm ok to stay on it. Last time I had surgery it I didn't react very well to the GA. My heart rate was 185 when I was on the ward and my blood pressure plummeted so much they had to check it three times as they didn't believe the readings were correct.