Hi, I have been reading about xifaxin on the pouchitis board. I asked my MD is she would prescribe some for me as nothing helps my pouchitis. I brought the link listed in the pouchitis sections to the salix web site, but my md said it is not fda approved for pouchitis and is not comfortable in giving it to me. That is would be "off label". Is there any other links/sites/info that support the use of xifaxin so that I can send her more information. She has referred me to another IBD md at the Beth Israel Deaconess in Boston that may be comfortable in using xifaxin, but i have so many md's now with all of my many auto-immune diseases that I have, that the thought of another md is not what I am looking for unless absolutly necessary. I am currently taking Levaquin for the pouchitis, Isn't that off label as well?
Thanks so much,Help please.
Tazzy

I've had a doctor prescribe Xifaxan for pouchitis and it did nothing for me. Old fashioned Flagyl works every time for me. I don't even mind feeling "gaggy" while taking it.

my g.i. dr. tried prescribing xifaxin a few different times and a few different ways for me. first he gave me samples to take at a higher dose for a short period of time. it helped me a lot and very quickly, but my problems returned gradually. we tried this a few times. then when i asked about a maintenance dose, he said he approved of the idea, and would see what he could do about insurance coverage. they covered the first month of pills but i think he tried a loophole; my instructions from him were not the same as on the bottle. when i tried to refill the prescription i got a letter from my ins. co. detailing that "this medication is not approved by the FDA for use in treating pouchitis."

i would love to know how a study on something so specific ever happens, because it sounds, anecdotally, like there's some potential for xifaxin. i wasn't sure it was helping me at a maintenance dose, until i ran out. within a couple of days i felt flu-like aches and fatigue again that i hadn't even realized had disappeared, and had more difficulty with liquid stool and frequency too. if you can find a way to, i recommend giving it a try. side effects for me were nil! good luck!

ellen