Should I take flourinef?

xebex

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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
 

xebex

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@*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

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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

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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.
 
Last edited:

perrier

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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.