?? Xifaxan/Rifaximin

[Guest guest]

For anyone taking this for HE - what dose are you on and is it working?

The doctors gave Ken one week to get his ammonia down with this drug

or else....

Barb in Texas

[Guest guest]

My 11 year old 78 lb son takes 200 mg a day

I think I have heard that the typical adult dose is 200 mg TID ??

Lori

>

>

> For anyone taking this for HE - what dose are you on and is it working?

>

> The doctors gave Ken one week to get his ammonia down with this drug

> or else....

>

> Barb in Texas

>

[Guest guest]

>

> For anyone taking this for HE - what dose are you on and is it working?

>

> The doctors gave Ken one week to get his ammonia down with this drug

> or else....

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One week??? Sheez!!! I'm not at all sure it can effect a change

quite that quickly, but we'll give it all the hope and prayers we can

muster!

I've been taking Xifaxan for nearly a year and a half now. They

started me on 200 mg. once a day. Unfortunately that set off some

severe abdominal pain, yet it was obvious (to us!) that it was making

a difference in the HE, so they scaled me back to one pill (200 mg.)

every other day. That did away with the ab pain, but after a few

weeks, the see-saw effect was bothering me. (See-saw = being

clearheaded for 24 hours or so and then the fog settles in gradually

for the next 24 hours). So we went to one every 36 hours. That

worked really well for me. (But, boy, can we tell a difference if I

forget one of those magic pills!!!)

After several months, it seemed to us that I wasn't quite as clear as

I had been, and so we eased into a one a day regimen. That's where

I've been for the past year and it's working EXTREMELY well for me.

Yes, it's a much lower dose than typical, but why take more if less

works this well?

[i think that 600 mg. is closer to typical. You might want to search

the archives ... I seem to recall Ali posting her dosage and it

startled me that it was so high.]

At my worst, I couldn't figure out how to write a check (and I was a

physics major in college!). Now, I'm finding I can drive short

distances (nothing over 35 mph!!!) which allows me to do a few

errands, go to my hubby's office, and even go to the grocery store by

myself. Sweet freedom!!!! Also, I'm once again capable of making out

a grocery list, paying bills, researching something online, even

selling on ebay again.

We're still occasionally aware of the HE and I know better than to

attempt certain things -- drive on the Interstate, light the gas

grill, or get into any upsetting situation (because with HE, we find I

can fly into a prednisone-temper all too easily!).

Barb, please keep in mind that while we began noticing improvement

within 48 hours, it took several months to get me back to truly

functional. As it is, my ammonia levels still hover slightly above

normal, though they're about half what they were a year ago. (Yes, I

know the actual level supposedly doesn't correlate directly with the

HE level, but it sure seems to do so with me.)

The true miracle of Xifaxan for me is that it kicked my Crohn's to the

curb .... utterly and completely!!! I have enjoyed eating whatever I

want (ok ... within reason!) for the past year and it's been sheer heaven.

Our prayers are with you & your whole family. Keep hangin' in there!!

Regards,

Carolyn B. in SC