Re: still here, just very ill

May 6, 2004

In a message dated 5/5/04 11:37:56 PM Eastern Daylight Time,

waltzacrosstexaswithme@... writes:

<< I take Florinef 0.1 mg twice a day, but the megadoses of potassium should

counter the ill side effects of that. >>

It should....but might it be wise for a doctor to see if you are having a

severe or unusual reaction to this drug? Could this be affecting your kidney's?

This drug works directly at the level of the kidney in reabsorbing sodium and

excreting potassium......I think it would make sense for someone to go out on

a limb here and look at the obvious. Also, if you are not tolerating the

large doses of Potassium.....it won't help. Someone really needs to consider

the

Florinef. I realize you use it for POTS......but if your passing out

anyway.....it is not just from the POTS any longer. Also, your blood pressure

is way

to high for an EDSer, another sign that the Florinef may no longer be a good

choice....they cannot forget you do have vascular components to your families

type of EDS. Sometimes, over time, things change in our bodies.....certain

meds are not the right one and changes may need to be made. Has anyone

mentioned the Florinef?

Hugs,

Sue

May 11, 2004

--

I am so sorry to hear of all the things you have been going through. I know I'm

responding alittle late (been having computer troubles), but I wanted you to

know that my thoughts and prayers are with you.

Love, Patti

still here, just very ill

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