Xifaxan users

1. Dose i took was 2 tablets 3 times a day.
2. Got it to "try" it.
3. Can't Say it helped in my case
4. Was on it for a few days.

Drug is kind of expensive though.

Ok, I will try to help answer your questions. I had read for several years that it had been used off label. My doctors won't let me use any of the biologics because my CD isn't active enough, but it affects my daily life. They want to reserve the big guns for when I really need them. I got my doctor and insurance to approve a 30 day trial run of Xifaxan in July 2007. I felt better than I had in a long time. It was right before a family vacation and I ate foods I never eat and I didn't suffer any trouble. Cut my bathroom trips down from 20+ to about 5 or 6, with those clustered around morning and dinner. After the trial I was off the medication again for about a month while the drug company, insurance company and doctor's office played their games trying to get approval for continuous use. Except for a few gaps where my approvals have run out and I have to wait for paper work, I have been on it ever since.

I am suppose to take 2 200mg tablets 3X day, But I was always forgetting to take the middle of the day dose, so now I take 3 200 mg tablets 2 X day. I haven't noticed any difference since I changed how I take it.

If you have good prescription coverage and you can get your doctor on board, it is worth a try. It is a very easy antibiotic in that it is only absorbed in the intestine. You have already shown that you feel better on it, so perhaps it will help you. It is a tier 3 drug for most companies. I changed insurances this year and had to meet a deductible before any coverage, just my Xifaxan for January and February was 2/3 of the deductible.

I started taking Xifaxan in the spring of 2006. I had already tried 5-asas, other antibiotics, and Entocort with no real relief. My doctor started it as a trial, but I felt so much better and my labs improved such that I continued use. I was on it until last fall and I was in complete remission almost that whole time. There were a couple of mini flares in between, but they were not my usual full blown flares. My doseages ranged from 2 three times a day and 2 twice a day--depending on the need. Ninety percent of the time it was 2 twice a day.

It is a rather expensive drug and it is off label usage, so you may have difficulty with insurance. Or you might not. I didn't. Salix (makers of the drug) have a lot of good studies on it's usage in cd, including case studies on long term usage. You can probably get your hands on them by contacting their corporate office and asking for the medical affairs department.

This drug seems to either work very well or not at all (from the stories I've heard). I happen to be one that has done extremely well. It's a long story as to why I'm not taking it now, but when I'm able I WILL be getting back on it.

Something I forgot to mention--I usually have whatever strange side effects there are from medications. I have never had any from xifaxan. I felt like a normal human being for the first time since dx.

Oh CrohnieYogi, what were your symptoms like when you first started taking it? Thanks so much for sharing.

Hugs!

thats weird Gail, My doctor said i would know in 2-3 days... maybe it takes longer.

I had just done research on the generic Rifaximin (sp?). I had seen it mentioned a lot in books I was reading and articles online. My local doctor GP, who is also a GI but wasn't actually doing much GI work at the time, wasn't familiar with it. It is the specialist I see in Boston who RX's it for me. He uses it frequently and his office had access to the studies and does all the work for the approvals for me. My current local GI is also familiar with it since the two GI's I see trained together under my old specialist. Would your doctor not agree to a thirty day trial since you did so well? I have called Salix customer service/patient reps in the past and found them very helpful so I'm sure they would be helpful too. I think in their own best interest any drugs they currently are making that have new marketing avenues is a boon for them.

Hi Nanners. My symptoms right before starting X ranged from fatigue, joint pain, abdominal pain/tenderness (especially around terminal ilium area), and constipation. When my dr said he wanted to try a med that was originally prescribed for travelers D I reminded him that D has almost never been one of my symptoms. Good thing I listened to him. It didn't take long to start working. The pain went away, I went from only 2-3 bm's a week to 1 a day, and all other symptoms disappeared as well. My labs soon followed. Over those three years (except for a couple of mini flares) my crp stayed between 0.2 and 1.3. The higher crp usually coinsided with some other illness.

Someone mentioned not being able to find cd and xifaxan on the salix website. That is because they can't legally link the two. Xiaxan (rifaximin) is NOT FDA approved for cd. And it will probably never be approved. Not because it doesn't work, but because of the expense involved in the process. However salix does have a ton of studies showing success with cd. They have the regular plain Jane studies and also retrospective case studies on long term usage. All you have to do is contact them and ask for copies and they will send them to you. Or you can have your dr call and ask. And if the insurance doesn't want to pay, ask your dr to write a letter explaining that the expense of the med is much less than lengthy hospital stays and surgery.

As far as I and my dr can tell this drug is super safe, so if you want to try it go ask your dr. It may work, it may not. But what's the harm in trying.

I hope this helped!

My doctor prescribed 1 - 200 mg pill three times a day during a bad flare last month. I improved significantly within days and continue to take it with his approval. He says there is definitely a bacterial component with Crohn's patients and Xifaxan targets it. He was not surprised by how much it has helped me. If remission is 100%, I would say the Xifaxan has taken me to about 85%. I'm going to continue taking it.

 

He wants me to start on Cimzia too. Still undecided--wondering if it could take me to 100%??? :-)

 

Oh--and the doctor said not many doctors are using the Xifaxan for Crohn's yet.