Have you tried Xifaxan?

[tots]

Went to the Dr today and he gave me Xifaxan. It seems that he dosent believe I could be having CD symptoms while on Remicade. Thats a whole other issue right now!

Have you ever tried Xifaxan?



Lauren

 

[Walt]

Yes L,
one can definitely flare on Remi.
I am flaring on Humi right now.
I'd be concerned if a pro did not admit it is possible?
not only is it possible,
seems common knowledge that biologics do not bring remission in 1oo%?
I only wish...

good luck with it
peace
w

ps
...for me, that is a clear red flag
sorry

 

[ronroush7]

There is s thread over in the Treatment section where someone believes that this drug is making their Crohns worse and wondering if anyone else has had this experience.

 

[tots]

I am getting tired of proving that I have CD.


Unfortunately, only the Dr who originally diagnosed my CD was able to find it during a colonoscopy. That was after a small bowel series found a stricture. Since then my Drs have not been able to reach the spot in the terminal ileum with a scope. Although the small bowl series from 24 years ago, a small bowel series from 5 years ago and a CT scan from last year all show the same thing. In the same spot. So, basically my Dr dosent really like treating it to aggressively until he can see it with a scope. I have to believe I am not the only person that has it in this spot. In the mean time I keep getting sick, a few more episodes of bleeding and I start feel like a fool going in to see him. I am on disability with my family Dr
because I just can get a grip on this. Eight weeks ago he did put me on Prednisone because I
was still going to the bathroom 8-9mtimes a day. So today we agreed to a colonoscopy in July and if he dosent see it then, he will decide whats next. in the mean time I am to try Xiafaxan for 6 days.

I really think I am going to go crazy, unfortunately all the Drs in Austin seem to belong to the same group. I guess the only thing I can do I stop treatment and have a few salads, some fruit and veggies and let things takes its course and hope I get the help I need then.

Its been a long 6-7 years and I an not dealing with it as well as I could emotionally/mentally.



Lauren

 

[tots]

Thank you Ron I am going to try and find it.


Lauren

 

[ronroush7]

You are welcome.

 

[Charlotte.]

Hi Lauren,

I've been on a 14-day-course of Xifaxan/Rifaximin (and I started a thread as well, so -@Ronrush7, maybe it was me you were thinking of?) and it definitely DID make my Crohn's way way worse. Just to keep that in mind that this IS possible and I'm not the only one. At least one person out there (a friend of mine with Crohn's as well) was on Xifaxan for SIBO as well and felt much worse.

There is a trial for Xifaxan for Crohn's with a much higher dose for several months in different study centres in Europe and I'm super glad that I did not apply for it.

It gave me more and more stomach pain (as if my chronic gastritis flares up again as well, still eating dissolvable oats as porridge daily to help my stomach lining) the longer I was on it, slight indigestion but what really made me feel worse was diarrhoea, many many BM's (so much more than usual), constant need to go to the toilet (sometimes only mucus or just gas but felt like diarrhoea and was not), burning and stinging pain in mainly the colon area (left colon part, also right part), cramping, gurgling noise, a bit nausea, stomach and overall tummy pain after food (but not as bad as in my worst times when every bite of food hurt so badly).
So more or less felt like a flare-up getting worse.

It got way better two days after having stopped. So now my gut is still more sensitive but I feel that the probiotics help things to settle down, but I still feel more gassy but it doesn't really move (visibly bloated without the gas moving out). Fortunately I can see things improving slowly but bit by bit. Hopefully the 2 week course was enough to treat SIBO.


So, what about you, Lauren, how are you feeling on Xifaxan? How many days have you been on Xifaxan so far and how long will you be taking it?

 

[tots]

Hi Charlotte-

I have not started it yet. Not real excited about it. I also have a really bad sore throat head cold etc. Just started Amoxaxillan for that. The Pharm said I can take both "might"
get a stomach ache he said. The Xifaxan is only for 6 days. I am
not sure the normal length of time. I ended my prednisone at the beginning of this week. Already in that cycle of eat and go.

I am guessing it may be time to see another GI, just to see what they have to say. With this disease you totally need to have a dr who trusts you. Let's face it everytime you have
a problem it's not feasible to have a colonoscopy, which in itself does not reach your TI.

My family Dr suggested I should be on disability for a while and it seemed to suprised my GI. I have been in a flare for 6 years.

How do you like your Dr?


Lauren

 

[shamrock15]

Hey tots - I had to "fire" my previous GI up here in Canada. A supposed crohn's expert. Won't say his name because I know there are people in my area here who are well served by him. He just wasn't a fit for me. He essentially wanted to tinker around because his normal approach wasn't working. He did get me on remicade though for which I am thankful. I found a new one, not necessarily the best personality but he knows his stuff and I have been well since I have been with him. He added aza to the mix which certainly helped in getting my disease under control.

If your guy can't get to the problem area with a scope repeatedly that should tell him there is a problem. Something is preventing it and it isn't a "normal" bowel. He needs some lessons in diagnosing problems, and then he needs to see a doc on his own to get his head surgically removed from his rectum! Talk to your family doctor to see if there is a referral to another GI, preferably not in the same practice as the one who is "treating," for lack of a better word, your disease.

 

[my little penguin]

DS is suppose to start that drug but in his case his crohns is not active ( checked everything out and his diarrhea is osmotic ( if he goes npo diarrhea stops instantly )
Gi is still trying to work out the why but in his case his Gi said his is not IBS which is what rifaximin is typically used for .
Ds has no blood in his stool at all btw /normal scopes bloodwork and fecal cal

Good luck

 

[Charlotte.]

@my_little_penguin: Has DS been checked for SIBO? SIBO can also lead to osmotic diarrhoea, as far as I know.
I haven't heard of the indication of IBS for Rifaximin, where I live it's only allowed for SIBO and officially only for traveller's diarrhoea, any other use is off label. I'm aware that in the US you have the widest indication width for most of the drugs.
For IBS they only use amintriptyline in a low dose scheme if they want to try a drug, apart from alternative treatment (probiotics, psychotherapy, nutritional advice etc.).