Hello all fellow j-pouchers! I was wondering how many of you have tried Xifaxan for pouchitis, and how do you get it? My family Dr and GI Dr have both wrote prescriptions for it, and sent letters to my insurance company, however they keep denying it and state that it's not FDA approved for pouchitis. I know though people have taken it for it, with good success. So any helpful information would be appreciated. On Cipro currently, and do Pepto Bismol in between that.
Thanks All!
Diesel
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Diesel- my GI's office - a gal that specifically deals with pre-approvals- called my insurance company to request approval of Xifaxan for my specific reasons/symptoms (pouchitis). Do they have an 'insurance' person that can help? I hope you can get it, it helped me tremendously. Does your GI have samples? My GI gave me some samples until insurance approved. Kara
I have been taking rifaximin for a year. I'm not sure if it is working because I have some other pouch issues. I am having a scope with Dr. shen tomorrow, so I guess I will find out if I still have pouchitis. Some of his patients have been on it for 10 years and he says it is safe.
I have been ordering it from Canadian King Pharmacy. You have to call them, get an order number, then your Dr faxes the script to them --with the order number on it. I can't remember the exact price, but so much cheaper than any store in US. I think I had to order 120 pills, they don't fill scripts for 2 weeks like at CVS. It's called rifaximin, but the pharmacist at CVS told me it is the same as xifaxan. It tAkes about 3 weeks from the time your order it and you pay with credit card.
1 (877) 745-9217
dr shen and my local GI have both written scripts and sent it to Canadian King.
Diesel, lots of medications are used quite appropriately for non-FDA-approved purposes. Perhaps your doctor can appeal based on medical necessity, or you could appeal to your state's insurance administration. I was lucky enough that my insurance covered it, but unfortunately the medication didn't work for me.
Thanks guys for all the information you have shared here. I got notice yesterday that after 3 appeals and my GI writing a letter to my insurance company they have approved me for Xifaxan. Now I just get to see if it works or not.
Good for you, Diesel, and good luck! I'm glad they didn't wear you down.
Thanks Scott! Hopefully I will have some success with it, and can come off Cipro for a while.
When I was on antibiotic rotation for chronic pouchitis, I needed to add Pepto Bismol to Rifaximin for better results, due to degradation of function while on it. It just did not work as well as Cipro or Flagyl. Since starting Remicade nearly a year ago, I've been off the antibiotic merry-go-round.
Jan 
Jan, how often did you take Pepto with the Xifaxan out of curiosity? I'm assuming you did the capsules?
Thanks!
Diesel
Two or three times a day. I would take a couple of generic bismuth subsalycilate caplets (much cheaper).
Jan
Ok, thank you for the info!
I ran out of my Xifaxan a couple months ago and sadly my Cipro/Augmentin/Pepto combo couldn't keep things stable. My copay for the Xifaxan was $0 through Walgreens, but now I'm wondering what it'll be with my new mail-order pharmacy (ldirx.com).
When I had Xifaxan in the combo, I was able to keep things stable (one or two BMs per day, mostly formed) for 7-10 days before I had to add in some (yucky) Flagyl for a couple days for a reset.
I'm up to about 6-8 BMs a day now, severely loose stools, and a lot of unwanted urgency and a bit of cuff pain. I need my Xifaxan back!
I want to try this one but not available in Australia unless you pay dearly, but maybe worth it for one month?
