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side effects from Xifaximin( Keith?)

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Posted 1/5/2016 8:39 PM (GMT 0)
So a little new years blip for my J pouched daughter. Severe pain, ER visit, thought Gallstones but too dehydrated for contrasted CT. Regular CT and Ultrasound showed nothing. Home, ok 24 hours, then a full day of throwing up. Labs showed lots of small abnormals. Anemia seems the worst of them. Doc thinks elevated folate may be indicative of bacterial infection and prescribed the very expensive antibiotic Xifaximin. She threw up the VSL#3, but have it for later. Pouch pretty watery, Iron pills making her tummy hurt. Eithero f these could be effecting things, but my main question, is what to expect from the antibiotic. There are a few things going on, and its hard to know if this will add to it. This doesn't seem like the Pouchitis description others have( sharp stabbing pain bout only subsided after a Dilauded IV). ALl thoughts appreciated. Happy New year, btw.
Posted 1/6/2016 2:47 AM (GMT 0)
Sorry your daughter isn't feeling well, pouchitis dx is usually a guess for any j-poucher who has GI troubles for a few days, the only way to really tell is with a scope.

Xifaxan is an $$$$ antibiotic but it is one of the best at treating pouchitis, one of the nice things about xifaxan is that it is non-systemic so there are very few side-effects.

It's nice that the GI prescribed Xifaxan to start with because they usually prescribe the cheaper Flagyl or Cipro to start with and those can have some additional side-effects.

Everytime I switch antibiotics I get a little tired for the first few days but that usually goes away pretty quickly.

My system doesn't respond to VSL very well either but I can tolerate Florastor. The nice thing about Florastor is that it helps treat one of the side-effects of Flagyl which is Thrush. I don't get it anymore after I switched from Culturelle to Florastor.

I hope that your daughter feels better soon.
Posted 1/6/2016 3:06 AM (GMT 0)
Everyone's pouchitis symptoms and severity are different, I never really had pain that I needed prescription medication to treat it. Some people have tailbone pain but I get pain in my right hip when the pouchitis is really acting up.

The main symptom is pressure in my GI tract and it feels like a fright train is moving through my small intestine and making a lot of noise. Sometimes I have diarrhea and other times I have more difficulty emptying my pouch.

My pouchitis is being treated so the symptoms are subdued but when I first got pouchitis I lost a bunch of weight and had bad gas & diarrhea, soon after my hip started hurting; I originally thought that it was c.diff but tested negative for it.

I can also go days or weeks without any symptoms.
Posted 1/6/2016 7:43 PM (GMT 0)
I was on Xifaxan about 13 years ago to try to treat Crohn's. It didn't help, but I also had no side effects whatsoever from it. As far as antibiotics go, it was one of the easier ones because, as mentioned above, it's non-systemic. Yes, it's a tad pricey though.
Posted 1/6/2016 9:19 PM (GMT 0)
Xifaxin is about as reasonable as it gets with pouchitis meds. It's possible that this is pouchitis, given that people can present differently. Side effects should be minimal, but it could change GI output, especially diarrhea as do other abx. Make sure to continue fluid intake.

I would suspect blockage, but the CT should have rule that out.

A pouchoscopy could be in order.

I'm sorry and hope this is just a hiccup. I was glad (albeit very envious) that your daughter is doing well with her jpouch (I'm having a rough time). I hope she goes back to normal life very soon!!
Posted 1/7/2016 1:35 PM (GMT 0)
I had Xifaxan as a 'try everything' med before surgery -- no side effects, even did feel very slightly better on it. The systemic absorption is virtually nil so it really acts solely in the intestine (in that sense it's almost a topical treatment like an enema would be).

The severe pain and nausea doesn't sound like pouchitis to me, more likely an infectious agent (or a bowel obstruction, but I'm assuming that was ruled out on CT). I would suggest treating this like any bout of severe gastroenteritis with BRAT diet, oral rehydration solution, lots of rest, etc. If she is having trouble staying hydrated at home don't be proud, get IV hydration. Check for skin tenting, dry mouth, tachycardia, etc (I'm sure you have plenty of experience with this stuff though).

Make sure she has a fresh stool sample tested for C. diff. I developed C. diff my first winter with the j-pouch and it took forever to diagnose because my symptoms were not 'typical' of C. diff (of course not, the 'typical' C. diff patient has a colon!!). Watery output raises my suspicions.
Posted 1/8/2016 8:18 PM (GMT 0)
Thanks folks. She is a bit better but still kinda weak and low energy. Talk about pricey, that drug was $1065.00 for 14 pills. Guess we will meet our deductible again this year(was really hoping not to one of these years).
Posted 1/13/2016 1:11 PM (GMT 0)
How come insurance doesn't pay for that? That's an insane price. Does the company not have a coupon?
Posted 1/13/2016 4:04 PM (GMT 0)

answers4me2 said...
How come insurance doesn't pay for that? That's an insane price. Does the company not have a coupon?

Sounds like a high deductible plan. If you have a high deductible they don't pay anything until you've met the deductible. I try to get plans with low deductibles for this reason but it's a balancing game, and I feel like, in a lot of situations, you end up spending the same regardless of whether you go for the deductible or you go for the copay.
Posted 1/13/2016 5:01 PM (GMT 0)
You can always pharmacy shop by calling all the local pharmacies to see what their prices are for the meds if you are paying a % of the charge.

Their prices can vary by hundreds of dollars within the same city, this is especially true with generics(brands have much more control over pricing). If you are paying out of pocket or a large percentage co-pay this can add up very quickly.

I have a low deductible plan which cost me $5 for my 30 day supply of Xifaxan but my insurance company paid $1,436.19 for the 60 pills in December of 2014.
Posted 1/13/2016 5:18 PM (GMT 0)

Katmom said...
Thanks folks. She is a bit better but still kinda weak and low energy. Talk about pricey, that drug was $1065.00 for 14 pills. Guess we will meet our deductible again this year(was really hoping not to one of these years).

How is your daughter feeling? If it is a blockage/stricture issue as Pluto suggested than Entocort could be helpful but the best thing to do is to get a scope, they can fix a stricture during the scope.

If she gets prescribed Entocort then you might meet your yearly deductible between the Xifaxan and Entocort costs.
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