starting fludrocortisone - any advice?

[MartinK]

Hi all...and happy new year!

I agreed with my doctor to try fludrocortisone, if make something for me and my problems with standings...or longer sitting.
This symptom limited me a lot from some activity, my muscles are totally exhausted, when I standing longer that 15 minutes...or sitting longer that 1 hour without back rests.
All is indicated also with a look on my CellTrend results.

Please, atfer how long time can I expect changes? And, how much do you take?

I'm trying to be careful - starting with 0,1mg ...and add Huperzine A in morning and evening.
And trying to lot of drink and take some salt.

I do not want to take it long unless I know the changes - I'm trying a "trial period" of this treatment.

Do I have something to watch out for?

Thanks a lot for all experiences and advices!

Martin

 

[used_to_race]

I just started 0.1mg fludrocortisone about 2 weeks ago. My illness is quite mild and fairly unique, but so far I haven't had any adverse effects from it. I also have not noticed a dramatic improvement. If you are hypovolemic (low blood volume) then it should help some, but I doubt it is going to be a miracle drug for you. I posted a poll on a POTS facebook group about this drug before I started. A little less than half of people who try fludrocortisone have a negative reaction to it, but nobody seems to know why. So I think you just have to try it and see. It is a synthetic form of the hormone aldosterone, so if your aldosterone is already high you probably shouldn't be taking it. Mine was low-normal so I feel pretty good about taking it.

 

[MartinK]

thanks for some of your short experience @used_to_race ! Hope for more...because here is probably more patients with experiences of fludrocortisone!
Yesterday, after my first use of 0,1mg, I had a little wreid feeling, little bit headache... but in evening, I was with more energy, after some exricise...
Today is without headache. Some for more good reactions!
Do you think two weeks for the test is enough?

thanks, Martin

 

[BadBadBear]

It severely lowered my potassium, and my cardiologist explicitly told me it would not. Please keep a close eye on your potassium while you take it!

Also, it was a pain in the bum to get off of, I tapered slow but still had withdrawal issues. If you decide to stop taking it, you also might need to go slow as it is a steroid.