Use of Florinef / Fludrocortizone

June 14, 2002

There have been several recent references on the list about people stopping

the use of Florinef (also called Fludrocortizone). We all know how

differently the various symptoms of this disease can be and how differently

various patients can react to the same med. And we all know we need to work

closely with our doctor(s) in dealing with our particular case. Thus I'm

sure there are patients for whom florinef is not the right medicine or may

not be needed at a particular time.

Having said that, I would like to note that several years ago Peg, on the

advice of a local neurologist, stopped the use of florinef. That doctor made

the recommendation based on the difficulty we were having in dealing with an

afternoon blood pressure spike with which we were concerned. While the B/P

was alright for a while, after several weeks Peg was consistently suffering

from unusually low blood pressure. She had lost the ability to stand or walk

at all. Despite using the other standard (and useful) suggestions like extra

fluid, extra salt, and midodrine, we were not able to move her blood

pressure consistently into a range where she could carry out most regular

functions. After suffering this way for several months we were able to visit

with a doctor in Washington, D.C. who was experienced with Shy Drager. He

said that in his experience extended control of low blood pressure almost

always required the use of florinef. He prescribed it again and Peg's B/P

improved quickly.

Based on our experience, I would suggest that those not using florinef need

to watch their patient carefully and if after a while they no longer can get

the B/P raised on a consistent basis, they will need to discuss introducing

florinef with their physician.

Peg and Jim from Guam

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*** Peg & Jim

*** # 29 Cruz Heights

*** Ipan-Talofofo, Guam 96930-4736

*** USA

***

*** Note: Guam is 15 hours ahead of

*** Eastern Standard Time (EST).

*** 14 ahead of EDT.

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