Re: Xifaxan for HE (brain fog)

[Guest guest]

Margart-

Nevermind my question !! I saw some of your previous posts about this-

It sounds like the xifaxan is helping already !! It's a great drug but

don't know if stops being affective after long term use or not ???

> >

> > As I already posted, I have been having severe hepatic

encephalopathy

> > (brain fog). My GI gave me a two-day starter sample of Xifaxan on

> > Thursday and a writtem prescription marked that substitution is

> > permitted.

>

[Guest guest]

Margie,

Ken is taking 3 pills a day and so far no HE even though his ammonia

level is 136. I can’t tell

for sure if it’s working, because his doctor said he “thought”

Ken’s ammonia level would level off and stay fairly

stable. So it could be 130-136 is

his new normal. We’ll see.

With love, Barb in Texas - Together in the Fight,

Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

[Guest guest]

Lori, thank you for your message. Like the other people here whose PSC was diagnosed when we were adults, we can only imagine what you and your child are going through. Yes, I think the Xifaxan is helping me already. My HE systoms were major confusion, forgetfulness, irritability, what my husband said were seizures, mostly which caused me to pass out. He gets so alarmed that he dials 911 and has had me taken to the ER twice. I never remember much or any of the details. This last time, two weeks ago on a Friday, I woke up in my bed on Saturday and asked my husband what the bandage on my arm was from. I did not remember being in the ER the night before and having blood drawn. Every time I go to the ER, they insist on drawing blood. My husband tells them not to do so because I am a hard stick, but they insist on doing it anyway. I think they are doing it partly to make money. I bet this last EEG (sleep-deprived this time) shows nothing just like the previous two EEGs. Our share of the bill each time just for interpretation by a neurologist is $90. My husband never complains, but it all adds up. Margie in MOPSC DX 3/99Posted by: "wildwildtrips" clwild1@...   wildwildtripsSun Oct 14, 2007 2:39 am (PST)So has the xifaxan started helping you already ? Sounds like it hasbecause you sound pretty coherent to me right now-but it is 3:30 inthe morning !!! I'm up because my son's gtube pump was alarmingagain..heavy sigh and can't get back to sleep. He has been takingxifaxan daily for over a year and I am really wondering if it isn'taffective any more. He has been having major problems in school,seizures likely - neurologist says to observe him for now after EEGwas ok, acting really strangely sometims, can't remember what he isdoing or what he just said fairly often, has even gotten confused ifit AM or PM......the list goes on. What kind of HE symptoms were you having ?