Fludrocortisone

Hi,
My question is has anybody tried fludrocortisone and has it made any difference?
My M. E. is very severe I am bedbound does anybody know whether this would assist in enabling me to sit up in bed?
I realise that you have to increase salt intake and wear compression stockings but I just wondered whether this would enable me to sit up and if anybody that's severe has tried it and had success?

J.

 

I'm not bed bound but I did try using it many years ago to see if it would make any difference to my ME/CFS symptoms. Unfortunately, other than cost me money it didn't do anything noticeable.

 

I am severe. As long as I am bedbound/horizontal: not worth it. During better periods where the ME itself is stable enough for me to sit up for a while but still being punished with OI/hypotension/fainting: quite helpful, but no miracle.

There are side effects, I have never been able to stay on it for more than a couple of months before needing a break.

 

I am not severe but i have used this and i think it was quite sucessful dealing with my problem of fainting.

I started passing out unpredictably when walking in the street (on supermarket trips) and the doctors did various tests but couldn't work out why. i can't find my notes from back in 2014 but if I remember correctly my pulse pressure was consistently low, only in the twenties (difference between diastolic and systolic blood pressure readings) None of the doctors seemed to care about this but to my lay persons way of thinking that seemed likely to cause problems.

I couldnt get anyone to measure my blood volume but i did get some Florinef and took that for a few months. My pulse pressure normalised i stopped fainting and felt much better. Eventually i started getting migraines so i stopped taking Florinef, but the fainting has not returned and my pulse pressure has been stable in the forties.

I have POTS but I don't faint with that.

 

I was severe and this was related to an additional problem that had caused additional fluid loss and weight loss (tbh random weight loss is not unusual for me, but this was extreme and correlated to this other problem--but it wasn't the first time for extreme weight loss, either, though probably a bit worse than the previous time).

Fludrocortisone did seem to help me sit up more and even get around the house more. And put on weight. I am not "all fine now" like my cardiologist thought might happen, but of course he didn't understand the M.E.

 

I have been taking fludrocortisone for over a year. It has definitely helped me maintain my blood volume better, mainly at night. I used to wake regularly through the night feeling completely dehydrated and unwell and needed to drink >3l of water a day. I don't need to drink as much now and generally sleep better.

I find this very ironic because fludrocortisone is one of the generic drugs that has been price gouged and when I was working as a vet tried to campaign to reverse this. It was a futile endeavour though.

 

@Jessie 107 have you considered Desmopressin instead? I find that to be more generally helpful for blood volume, even if I am horizontal. Less side effects, easier to stay on long time.

 

Best thing that ever happen to me. I don’t use today but was a great drug to get me out of bed. You will need other things since usually this alone won’t do it ( I do midodrine+betabloker)
If you have been blessed to be able to try, i would try it, worst case you can stop it if it does nothing, but you might be miss out on the best thing for not trying at all. Ask your doctor, this is my humble opinion that one should try everything because we are all different!!!!

 

I could not tolerate beta blockers. Never tried Midodrine, but I am wondering if tightening blood vessels would be any point to try as long as I find dilating blood vessels to be very helpful against PEM/lactic acid.

 

There are tons of things like calcium channel blockers, another drug for those high BP but cannot remember, ivabridine....

 

I have severe M.E.

I've been on Fludrocortisone for about 18 months. It has helped with my orthostatic hypotension. But only helped a bit with my orthostatic tachycardia. The addition of low dose BB (bisoprolol) last September has reduced the tachycardia, but still some way to go.

Had some testing yesterday and told I easily meet the criteria for POTS (HR over 170 bpm and rising). Now waiting to see the consultant for meds review.

The combination of fludrocortisone and BB has helped my function, with the limits of the M.E.

 

I have mild symptoms overall. I have been on fludrocortisone for many years and it definitely helps my OH. I usually don't have to worry about standing up too fast unless I'm in a PEM phase or in a very hot environment.

 

I considered taking fludrocortisone but in the end didn't due to the possibility of worsening osteoporosis.