Medication for pouchitis or another type of bacteria infection in the pouch

I was on it for a six months. I would not say it is stronger than cipro etc, however in the UK it is given for long term use and deemed better tolerated with less side effects than cipro. The only issue in the UK was the expense and requirement to get it direct from hospital instead of local doctor. It helped, but I thought cipro was better at managing symptoms, rifaximin better for long term. They initially gave a high dose, then lowered it gradually until symptoms worsened to find the lowest dose that manages symptoms effectively. I stopped it as it was too much work to get it each month from the hospital and I do not like the thought of long term antibiotics. Side effects, none noticed.

Thank you for your reply AnthonyA. I agree about being on an antibiotic long term. Definitely worrisome. I am, though, glad to read that you didn’t have side effects. I am in the USA and am on Medicare. Xifaxan is on a high tier and  quite costly even with meeting  the deductible.

My Doctor also talked to me about trying a stronger anti-diarrhea medication. I’ve been taking Lomotil forever and it has always worked well for me.  I don’t know which medication the Dr has in mind.

I take xifaxan 550mg three times daily.  I've been on it for a while. Works very well for me.  No side effects.  Its activity is limited to the gut -  not systemically absorbed as other antibiotics are, so safer for longer term use. My pouchitis was mild, but my pouch tends to get out of whack with bacteria because the mucosa of the pouch wall is loose and "floppy."

In the past I've been on  Cipro and Flagyl.  Switched to Tinidazole for a while (a cousin of flagyl with fewer side effects).    Vancomycin is also used, but usually only when other short term antibiotics don't work.  I've not tried it.    Xifaxan is the only one of the bunch that my doctor will prescribe long term.  

Xifaxan is very expensive.   For a while my  doctor prescribed through a Canadian pharmacy where either brand or generics can fill the prescription by mail and much more affordably.  I used this one, but there are others as well.

http://canadianpharmacyking.com/

Xifaxin isn't absorbed systemically and stays in the gut as mentioned above, so there should not be any concerns about using it long term. However, antibiotics should be periodically rotated in order to maintain their effectiveness. I took Xifaxin in rotation with other antibiotics for 25 years to treat pouchitis before going on Remicade and off antibiotics. I didn't have any problems with long term antibiotic use.

Thank you AMB and CT Barrister!! Your responses are so very much appreciated!! Also, the Canadian pharmacy recommendation may come in very handy!
Alice

Hey!

Chiming in as someone who's been on xifaxan a number of times. I find that it hits my stomach SUPER hard if I don't take it with food - it's like swallowing a brick!

Otherwise, other than being a little bloated, I've never had side effects with it. Beware of but burn though - for some reason this medication makes my output like acid!

Thank you so much for sharing your experience with Xifaxan. I’m on day 2 now. Although, I got it Thursday but only took 1 to see my reaction.
Yesterday I experienced the stomach pain and nausea soon after taking a pill. Fortunately that went away. But dizziness persisted all day. Just feeling out of it. And got hot flashes ( reminded me of menopause hot flashes.. ugh).
I guess my body has to adjust to it?
I just need to get this pouchitis turned around!  
I appreciate everyone’s comments and advice! I don’t have anyone in my family or circle of friends who have dealt with the UC/ JPouch journey, so I’m glad I have a caring support group to lean on!!
Thank you!!
Alice

Just checking in here, have been on CIPRO many years but I think my pouchitis has become resistant to it now. They have me on Augmentin for a trial because I can’t take flagyl with the side effects and because the XIFAXAN is so expensive here in Australia.   Do you reckon I can get in from a Canadian pharmacy and if so what’s the costs in US Dollars there?

Xifaxan  costs a bunch in the USA. Retail for my 14 day script from CVS pharmacy was $2700.00. However, price checking other pharmacies, the price was a bit less. That still blew me away!!
I’m on Medicare and my part D insurance paid all but a fraction of it, which was then my responsibility. I had to get the script pre authorize, though, but it only delayed me getting it a couple days.
I’m presently on day 7 of the 14 day script. It is helping. However, side effects are bothersome, but manageable.

Alice, what side effects are you having?  They should be purely gastrointestinal, if there are any.

Unfortunately, I have had side effects which are bothersome. Ive  talked to my Dr about them and he said he’s had a few other patients experience what I’m experiencing. But most don’t experience side effects.

The biggest issue I’m having is dizziness/ feeling off balance.  Other issues include nausea, but that subsides within an hour after I take a dose. I take the pill with food; and   hot flashes, which subside within an hour after a dose.

On the plus side, the pain/achiness on the left side of the pouch is now gone. Also, I’m not “ going” as much. And the urgency feeling is much less. For that I’m thankful.

Alice,

Xifaxin is not systemically absorbed and is designed to stay in your gut. The conversation I would be having with your doctor is "how I am having those side effects with a drug that is designed to stay in the intestines?" I would also be concerned that there is some unknown other cause and effect relationship at play that is causing those side effects.  I would suggest it might be in your best interest to look at other possible causes of those symptoms, which are concerning.

Here is a study on xifaxin which concluded that "the adverse-event profile of rifaximin did not differ from that of placebo in two randomized, double-blind, placebo-controlled clinical trials in which 320 patients received rifaximin 600 mg daily and 228 patients received placebo for 3 days. All of the most common adverse events reported with either rifaximin or placebo (eg, flatulence, abdominal pain) are common symptoms of travelers’ diarrhea and were unlikely to have been caused by the study medication."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5335639/

Thank you gif sending me the study.
Hopefully, when the pills run out, which is in a few days, the side effects will go away too. If not, then it’s something else. Fingers crossed!! 🤞

According to that study and what I have read elsewhere, you absorb less than 0.4% of the pill systemically. If that's causing your symptoms imagine what they would be like absorbing it at 100%. They would be exactly 200 times worse.

I do think the nausea is possibly related to xifaxin. The hot flashes and light headedness/dizziness seem less likely. Let us know if they stop with cessation of the medication. If they don't, I would recommend you get some testing done.

Interesting that so little gets  absorbed systemically.

i will let you all know about the side effects after I’m done with this round!!

I’ve had issues in the past with antibiotics. A couple caused anaphylactic shock. I have to be careful!

This is an old post, but I wanted to add something. I get my Xifaxan from Israel Pharmacy. There, it is called Hepazek. It costs about $200 for 30, 550 mg tabs. Well worth it when I need it. My concierge doctor turned me onto this pharmacy and they are very good.

Just to be clear we can get it in Oz but not on the Public Scheme for pouchitis so we would pay private prices which is $466 for 56 pills.