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Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 10:01 AM (GMT -7)   
I know Zanne is one who takes this med on a daily basis and was looking for some answers from her and others who use it.  I used this while on my trip for 7 days and felt so much better while on it.  Since I have been off of it, I feel like I am kinda going backwards and am thinking of asking my doc about taking this fulltime.
 
I would like to know the following:
 
1. What dose you are taking?
2. Why you got on it in the first place?
3. How its helping you?
4. How long you have been on it?
 
I had a stomach virus Sunday night, felt like I was improving yesterday and woke up this morning feeling fine, but soon as I ate, I feel like crap again.  I am just wondering if this might be the med for me.  I feel kinda gastritis like going on right now.  I take 60 mg Prilosec, so I know its not acid reflux.  Thanks for you help. 
 
Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/3/2010 10:59 AM (GMT -7)   
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.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/3/2010 11:09 AM (GMT -7)   
I wish i knew when it was a good time to take it. I have a lot of this medication. I feel like i am using the bathroom a lot. But... I think that is because of other things.

I guess the surgery is just what i am going to have to do.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/3/2010 11:14 AM (GMT -7)   
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.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 11:44 AM (GMT -7)   
Thank you so much Zanne! I think I asked this before, but have you had any issues with yeast infections while on it?

I really suffer with more constipation than diarrhea, but my guts are feeling really yuck since I stopped it, and it did make me feel better while I was on it. I was taking 2 tabs twice a day and that worked well for me. I am just hoping my doc will agree to me taking it.

Anyone else, with experience??

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 3/3/2010 11:48 AM (GMT -7)   
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.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/3/2010 11:50 AM (GMT -7)   
Well, when I did take it, I felt I used the bathroom the same or even more. I think it made my Flare pain worse. I wonder why? Do you want to increase your BM's?

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 3/3/2010 11:51 AM (GMT -7)   
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.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 11:54 AM (GMT -7)   
Debilitated I think you had the die off the first few days can cause, because about 2-3 days after I started it, I felt MUCH better.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 11:55 AM (GMT -7)   
Oh CrohnieYogi, what were your symptoms like when you first started taking it? Thanks so much for sharing.

Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/3/2010 12:30 PM (GMT -7)   
My doctor suggested going to 2 tabs 2X day, but since the 2 tabs 3 X day was working I didn't really want to mess with it. I may play with it a bit now. When I was taking other medication mid day I was much more compliant with taking a mid day dose, but now that Xifaxan is my only medication that I take 3 X day, I tend to forget, so I just take the 3 tabs 2 X day. If I can do 2 tabs, 2 X day, I can save some money, but not if it means changing how I feel.

I don't have any trouble with yeast infections from the Xifaxan. I have some fungal issues from an old fistula that never closed properly, but that was going on before I started the Xifaxan.

As posted the makers have tons of studies and are very helpful with getting insurance approval. I think they basically just bury the insurance company with studies.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/3/2010 12:37 PM (GMT -7)   
thats weird Gail, My doctor said i would know in 2-3 days... maybe it takes longer.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 12:52 PM (GMT -7)   
Zanne I did go on the web site for Salix Pharmaceuticals but I can't find any info on Xifaxax and Crohns. Do you think I should call them? I was thinking of doing so, so I could go in with the information when I see my doc. Unless you know where I can find some info????
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/3/2010 1:12 PM (GMT -7)   
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.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 1:27 PM (GMT -7)   
Yeah I think he will agree to a trial. I just have to say I feel so much better while on it, all the little nagging bleck feelings just go away. I would really like to try it. On a side note (LOL) I intend to tell him about you, since you and I are so similar with our Crohns and hope that he will go for it. He is very respectful of my opinions, so I think all will go well. I will let you know how it goes. Thanks for all your help!!

Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 3/4/2010 6:48 PM (GMT -7)   
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!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/5/2010 8:04 AM (GMT -7)   
Thank you CrohnieYogi, it was a BIG help. I know this med will work, because I was getting sick before my trip and still having symptoms 2 days into it and within a few days of starting the Xifaxan I felt better. But a couple days after I got off it, those symptoms returned. I will put a call into Salix. Thanks for your help.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 3/8/2010 8:17 PM (GMT -7)   
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.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/9/2010 8:33 AM (GMT -7)   
I am pretty sure the doc is going to agree to it. I called Salix but was unable to get any info from them, they said my doc could request it. But I did find a few articles about it to take to him. In my case at least, I do agree that there is a bacterial component to my Crohns. Because of my resections I am now prone to SIBO, and that seems to be my biggest problem of late. Thanks for you thoughts!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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