Xifaxan Experiences and/ or Side Effects, Anyone? - Page 2 - Prescription Medications - IBS Self Help and Support Group Forums - IBSgroup.org
Advertisement

Jump to content


Photo

Xifaxan Experiences and/ or Side Effects, Anyone?

sibo rifaximin weight gain hunger anxiety ibs-c fatigue mood swings appetite bloating

  • Please log in to reply
25 replies to this topic

#21 SIBOKid20

SIBOKid20

    New Member

  • Members
  • Pip
  • 8 posts
  • Country:United States

Posted 12 October 2015 - 07:13 PM

Thabk you newly_diagnosed, how is your progress coming? I will soon take a course of Xifaxan with neomycin for 10 days. I am planning on eating plenty of carbs when I take them, but this is also due to the fact that I cannot digest any fat that isn't MCT and that leaves me with just chicken :/.

#22 newly_diagnosed_PI_IBS

newly_diagnosed_PI_IBS

    New Member

  • Members
  • Pip
  • 10 posts
  • Country:United States

Posted 21 October 2015 - 08:00 PM

Hi SIBOKid20-- my progress is coming along well on anti-microbials (berberine, neem, oregano oil and allimed) and several other supplements. I am taking this for 8 weeks (currently in week 3) and then going on a prokinetic. If that doesn't work I am going to try what you are on now--rifaximin + neomycin. I hope it works for you-- I hear taken in combination is much more effective for SIBO. When I took rifaximin over a year ago --I hadn't been properly diagnosed with SIBO and thought I just had IBS-- and the dose of rifaximin alone didn't do anything for me, but now that I am much more knowledgeable about my condition I would definitely take it again. Please let me know if it works for you!



#23 asmith925

asmith925

    New Member

  • Members
  • Pip
  • 1 posts
  • Country:United States

Posted 02 April 2016 - 05:36 PM

Hello all.  I'm new to posting here but have read many posts over the course of the last few months and thought it might be helpful if I shared my experience as reading others' has been helpful to me.  I've never been diagnosed as having IBS, but I think that that's probably just luck since my doctor is integrative and figured out in only about 6 weeks that I have SIBO (alternating C/D).  I've experienced gastrointestinal trouble for the past 2-3 years, but only went to the doctor about it a couple months ago because I'm stupid and don't like going to the doctor.  But it had gotten to the point where I really couldn't cope anymore.

 

I've just begun my second course of Xifaxan.  The first one was Xifaxan alone (550mg 3x a day for 14 days) but this time I'm taking 500mg Neomycin twice daily as well.  I'm really hoping that it works better this time.  The first course did lead to significant improvement of my allergic symptoms, but made no real difference in my stomach issues.  And the allergic symptoms did not go away completely, they just got less severe.  For about 3 weeks after I finished the first course I tried low fodmap and the SIBO specific diet, but had to stop each because my allergic symptoms were getting worse.  Basically I figured out that if I eat any one food more then 2 or 3 times in as many days, I start having negative reactions to it (headaches, rashes, brain fog, mild asthma, abdominal pains, eye redness/dryness etc).  

 

My main point in posting now however is to reassure people who are as seriously FREAKED out as I was during the first 10 days of my first course of Xifaxan.  I was told that I would start feeling better in 3-5 days.  Not true at all.  The first few days I was very lightheaded and dizzy and my extremities tingled/went numb frequently, and that did improve as my body got used to the medication.  But up until day 10, everything else got worse and worse.  My reactions to food got worse, as did my bloating, constipation, brain fog, fatigue and (consequently I think) my mood.  I felt like an absolute whale and my face felt so puffy that it hurt, though friends insisted that I looked normal.  On day 6 I began experiencing incredibly painful abdominal cramping, worse than I've ever had in my life.  Like a stabbing feeling.  Multiple times I shuffled off to the bathroom at work not to use the toilet but to curl up in a ball in the corner and cry from the pain.  I got concerned that I was having an adverse reaction to the medication, and my doctor asked if I could hold out until day 10 and I said I would, because I never wanted to have to take that awful medication again.

 

Low and behold, on the evening of the 8th day I came down with what I thought was the worst head cold of all time.  Eyes red as the devil and tearing nonstop, nose running like a faucet.  Actually I thought it was a food reaction at first but then I woke up still feeling very congested on day 9 and assumed it was a cold that had struck while my immune system was at an all-time low.  But then I woke up on day 10 and it was gone, and my food reactions were much less intense, and the awful cramping stopped.  So I think it was a final coup of die-off.  

 

I completed the 14 day course but didn't see any improvement after that 10th day.   I weighed myself on the last day and had put on 5 lbs since starting the xifaxan.  The next day I was down 1 lb, and the day after (48 hrs after last dose) I was back down the other 4 lbs.  So it definitely caused significant water retention for me.  

 

Because I'm feeling a bit better before beginning this round of antibiotics, I'm really hoping that they don't hit me as hard this time.  Mostly hoping that they really work this time.  I think that it was a mistake not to take the neomycin as well the first time since Pimentel says that anyone who has a baseline methane reading of 3ppm or over should be on both, and my baseline was 3ppm and went up to 11 by the end of the test.  But my hydrogen was way higher than that, and given the fact that Xifaxan alone is also suggested for alternating C/D patients, I can see why my doctor started me out only on the Xifaxan.  The only side effect I've noticed so far this time is nausea, but it's only been a day so we'll see.  I'll come back and update in a few weeks, hopefully to say that I'm feeling much better :)

 

Anyhow, definitely do not assume that just because you don't feel better within a few days or even a week that it's not working at all.  I mean, it might not be.  But it did work (albeit not fully) for me, and things got infinitely worse until the 10th day.  I don't blame anyone who has a similar reaction for stopping early.  I considered stopping constantly for the first 9 days and was seriously afraid that I was doing myself more harm than good.  I can honestly say that it was the most awful that I've ever felt physically in my life.  But if you think that you can, try to hold out for 10 days just in case.  Despite the fact that I still react to food and have many other symptoms, the fact that I can take a bite of something without getting a migraine or having my ears start buzzing within 2 minutes made all of the awfulness worth it.  



#24 Ouch34

Ouch34

    New Member

  • Members
  • Pip
  • 6 posts
  • Country:United States

Posted 05 April 2016 - 12:54 PM

I just finished a 21 day run on Xifaxin 550mg and it did nothing. My doc also never tested for SIBO. She wanted me to follow up exactly 2 weeks after I was done with the Xifaxin, so I'm going in next week. Not sure what the next course of action will be, but I'm still having daily pain and bloating. It's so exhausting!

#25 newly_diagnosed_PI_IBS

newly_diagnosed_PI_IBS

    New Member

  • Members
  • Pip
  • 10 posts
  • Country:United States

Posted 10 April 2016 - 06:30 PM

Ourch 34- find a dr that tests for SIBO (Lactulose breath test)- you may want to see a functional medicine dr or a naturopath (also many do skype if they are located out of state so you are not geographically tied). Check out sibo.info to see if your symptoms match or various SIBO Facebook groups. It's estimated anywhere up to 70% of IBS patients actually have SIBO. 



#26 loansforlife

loansforlife

    New Member

  • Members
  • Pip
  • 4 posts
  • Country:United States

Posted 19 August 2016 - 08:53 AM

Hey everyone,

 

Thought I'd give you an update on my progress. Sadly, I can't really say there's been much. My third day being off of Xifaxan was on Sunday, and I felt TERRIBLE. I was really bloated and debilitatingly tired all day, and by the afternoon I began experiencing some flu-like symptoms, such as the chills, body aches, and just that general feeling of being unwell. The only slight improvement I did notice was a modest reduction in the water retention I'd been carrying around, but the bloating was just as bad as when I was on Xifaxan. The following morning, I woke up feeling slightly better- no more flu symptoms, but the extreme fatigue and bloating remained in full force. The water retention was a bit better, though nowhere near back to normal. This feeling of extreme pregnancy-like bloating has persisted all week. The only thing that seems to be helping is reducing my consumption of vegetables and fiber in general. I seem to have a REALLY hard time breaking down vegetables, even in their cooked state (leaky gut, perhaps?). Over the past couple days, I've been cooking and pureeing a small amount of carrots and cucumbers, which has definitely seemed to help my bloating. 

 

In addition, I believe there are a couple variables worth noting:

 

1) I'm not sure if Xifaxan has messed up my menstrual cycle this month. As of Monday, I've been experiencing symptoms that feel exactly like PMS, despite the fact that my period is not due until next Monday, and I generally only start getting PMS symptoms 2-3 days before my period. My breasts are very swollen and painful (more so than I experienced while on Xifaxan, so I highly doubt it's just lingering water retention), I feel very emotional (although this can also reasonably be expected considering the anxiety I've felt about the whole Xifaxan thing). That said, I can't say for sure just how much of the bloating, fatigue, and lingering water retention is associated with Xifaxan, or if I'm going to start my period early. I'm looking forward to finding out.

 

2) In terms of bloating and fatigue, I actually feel worse after taking Xifaxan. However, there are a couple positive changes. First, the horrible smell of my gas is completely gone. I used to have the most awful, embarrassing odor to my gas, and now it's nearly odorless. Second, while my bowel movements are nowhere near as frequent as they were while on Xifaxan, I do have them about twice a day now, as opposed to before when I only went once a day. However, I will say that my incomplete evacuation has returned after stopping the medicine, which is a bummer. 

 

Ultimately, do I think Xifaxan helped me? Sadly, no. Of course, this absolutely doesn't mean that it won't help you- everyone if different and I wish I were one of the people it seems to help but, alas, I am not. 

 

Anyways, I'll keep you updated if anything changes or something comes up that I feel is worth noting. Please let me know how your progress is going as well!

 

I too noticed a change in the odor of gas. it used to be a really bad sulpher smell but now it is more mild. However, the pain is a bit worse, so I am not too sure about that trade off..







Also tagged with one or more of these keywords: sibo, rifaximin, weight gain, hunger, anxiety, ibs-c, fatigue, mood swings, appetite, bloating


Advertisement

About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service | Crisis Resources

Irritable Bowel Syndrome |  Inflammatory Bowel Disease |  Crohn's Disease |  Ulcerative Colitis |  Fibromyalgia |  GERD - Reflux Disease


©Copyright 1995-2016 IBS Self Help and Support Group All rights reserved




This website is certified by Health On the Net Foundation. Click to verify. We comply with the HONcode standard for trustworthy health information: verify here