Should I take flourinef?

[xebex]

Flourinef has been suggested to me twice now by two differnt doctors. I have low blood pressure but doc says it’s not too low and they aren’t that worried about it.

I also have a possible spinal fluid leak that could be causing autonomic dysfunction. I can’t stand up for more than 20mins and am having to lie down most of the day. I would say that My energy levels are much higher than most people with ME who are bed ridden. I feel the majority of why I have to lie down is to do with my spinal injury, for example if I stand for too long I’ll crash and have a 7hour long sleep attack but that won’t be enough to provoke PEM the next day. I do get PEM but currently can’t be active enough to inflict it.

Salt and compression stockings aren’t really helpful in the long term by they can pull me out of a dip so to speak.

I’ve heard great and terrible things about steroids and am super apprehensive to try.

Does anyone have any experience/advice to share?

Thanks

 

[wabi-sabi]

Florinef is one of the medications recommended by docs who understand ME/CFS for the orthostatic intolerance. Can't find a citation at the moment, sorry. There's no telling how you personally will react, but I think it's worth a try.

 

[xebex]

Thank you that’s encouraging.

 

[*GG*]

I've been taking 0.3 mg for years now.

GG

 

[xebex]

@*GG* Good to know thanks, I’ve read all kinds of stuff about adrenal crashes and you can’t just quit it you have to taper off it, it makes me a little nervous!

 

[Pearshaped]

Florinef is a real game changer for some people.
In my case it helps ,but unfortunately not as much that it changes things drastically for me.
If I were you I would definetely give it a try, IF it works for you, you will notice it after a few days.

 

[xebex]

Florinef is a real game changer for some people.
In my case it helps ,but unfortunately not as much that it changes things drastically for me.
If I were you I would definetely give it a try, IF it works for you, you will notice it after a few days.

I’m so torn, if you have connective tissue issues it can weaken it further I don’t know for sure if I have connective tissue problems but some symptoms are suggesting it.

EDIT just found out flourinef doesn’t affect connective tissue.

 

[mitoMAN]

I've been taking 0.3 mg for years now.

GG

May I ask whats the typical dosage and how fast did you notice effects?
Do you take 1-1-1 splits throughout the day or 0.3mg at once?

I will start with 0.1mg I guess and see how that goes.

 

[perrier]

May I ask whats the typical dosage and how fast did you notice effects?
Do you take 1-1-1 splits throughout the day or 0.3mg at once?

I will start with 0.1mg I guess and see how that goes.

How did your Florinef experience go? Thanks.

 

[mitoMAN]

no effect at all after 3 weeks