# Viberzi (eluxadoline) now available



## mellosphere

Hello friends,

Longtime sufferer of IBS-d here. I have been keeping close tabs on the newest medication to be approved by the FDA for IBS-d, called Viberzi (eluxadoline).

Per multiple online sources, it is now available via prescription. Looking forward to hearing some stories about how it works. I intend to try it myself ASAP


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## PD85

I would love to hear how you do on it. I am going to try it after a few more things I want to try first. I will report on these forums how I do.


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## JonSnow

I have been on this medication for 1 week, 100mg x twice daily.

Short version:

It definitely firms up the stools.

I need to take it longer before I can say with any certainty how it affects pain, gas, urgency, bloating, etc.

I suspect it is less constipating than other drugs I have tried such as Immodium, Lotronex, and Methscopolamine Bromide, but not 100% sure yet.

Longer version:

My intent was to stay on a safe diet the first week and let the Viberzi build up in my system before experimenting with unsafe foods. However, my safe diet is high in protein and low on fiber and produces solid BMs. Therefore on about day 3 I was getting constipated and had to add fiber to my diet at a pace higher than recommended, to get things moving. I have experienced a lot of gas and slightly uncomfortable intestinal pressure off and on the last 4 days. I don't know if that is because I haven't adjusted to the increased fiber, or if it's due to the Viberzi. My BMs seems to be headed toward regularity and everything has been solid so far, no diarrhea. I think this next week will give me a much better idea about this drug's benefits and long term viability.

My soapbox:

Get to your GI and try this drug! I believe this is the very first drug in the US to be designed specifically for IBS-D and FDA approved for both men and women. I've been waiting 15 years for a drug! Why isn't everyone trying it and reporting results? I see TONs of posts about people feeling frustrated, hopeless, and desperate. I don't mean to belittle anyone's feelings, they're certainly legit and I've felt all those things many times. It just bugs me to see all those posts, and to have tracked this drug for 2 years, and now I see a whopping 2comments about it in a month. Who knows if Viberzi will work, but everyone needs to at least try it. Hopefully it will make enough money that companies will invest more money and research into additional drugs. Ok, that's the end of my soapbox


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## AIRPLANE

I am more IBS-A these days, but I have been taking Tramadol as needed to deal with primarily D. I usually take a break from it on my days off if I don't have to go anywhere. Since Tramadol is a pain med, it does help with pain and D. I also use glycerin suppositories as needed to try and get everything out, since difficult/incomplete evacuation can happen with both C and D.

I don't have a gastroenterologist- the nearest one to me did a colonoscopy and then dropped me when it came back normal. I had hoped to discuss SIBO and Rifaximin with him but wasn't given the opportunity. That was 4 years ago and Viberzi wasn't out yet. Still, after that experience I don't think that I will try going back to him. I have pretty much concluded that if a gastroenterologist doesn't offer to look into things like SIBO, that it means that they aren't interested in it and have poor knowledge on the subject. I have also been told by physical therapists that I have a lot of adhesions, but good luck finding a Dr who is open to that subject- it isn't going to happen.

I did mention Rifaximin and Viberzi to my primary on my last visit, but she wasn't in favor of either one of them. She said that she had not heard good things about Rifaximin, and Viberzi was too new to know much about it. She felt that I was better off with the Tramadol.I have learned not to pressure Drs about things because it usually causes a bad relationship and you are stuck trying to find a new Dr, which can be tough since they read your previous Dr's notes which may not be very helpful if you left on bad terms.

I am glad that I am able to take Tramadol because it is definitely better than Imodium, which can be too constipating. Still, I am curious about these other meds and wish that I could have an opportunity to at least try them. If anyone has a Dr who is willing to let you try it, I agree that Viberzi would be worth trying if D is your issue.


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## mellosphere

Thanks for the update Jon! I am going to my doc this afternoon to try to get it. Will post any results in the future.


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## Beauch

JonSnow, my GI doctor never mentioned this drug and I saw her only about 8 weeks ago. I have been in contact with her and have let her know that the strategies shee recommended aren't working. I don't know why she hasn't even mentioned this drug. Please keep us posted on your progress.


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## cchaffin63

Hi!

Has there been anymore updates on this drug by anyone? I currently take a concoction of meds to make the D not happen. Librax 3 times daily, minocycline 1 time per day, and zofran 1 to 2 times a day depending on how good of a day i have. I would like to only need one medication, but would love to hear more reviews on this drug. I have an appointment in a month with my primary doctor, but she is not my GI - but more open to trying mew medications. Thanks in advance!


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## JonSnow

It's time for my weekly update. I've now been on this drug for 2 weeks at 100mg twice daily.

Stool Consistency: It's really, really, really solid. It's too solid. Even after adding TONS of fiber to my diet, I can do nothing but poo solid chunks - see type 1 of the Bristol stool chart. I think I could probably lower the dose significantly, but I will attempt to stay at this amount until my GI appointment in three weeks in order to see if my body adjusts.

Pain and Gas: There's still of lot of both. Some of it is due to the fiber increase, which my body is getting used to but still isn't there 100% (it can take over 2 weeks to adjust). However, there are other pains that I can tell are not healthy: these are the pains associated with my IBS. The Viberzi doesn't eliminate these, but it does seem to reduce them. I feel that Viberzi doesn't treat the underlying cause of my IBS, it just masks the symptoms.

Outlook: The problem is that this drug forces me to eat too many unsafe foods in order to not get constipated. These foods still cause problems in large quantities. I think I can find a reduced dosage that will allow me to eat some unsafe foods, not feel too much pain, and not get too constipated. Balance is key


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## dekkalife

Good progress! How does it compare with plain old Imodium?

I'm looking forward to trying Viberzi, but I'm worried that it's more or less a prescription version of Imodium, which doesn't stop my diarrhea.

Thanks!


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## JonSnow

I think you'll have to try it for yourself to find out if it works or not. My own belief is that there are different unknown underlying causes of IBS, and if your underlying cause is different than mine then what works for me may not necessarily work for you. For me personally, I can take a low dose of Immodium daily but there is still risk of diarrhea if I eat too many unsafe foods. Or I can take a large dose of Immodium once to stop oncoming diarrhea, but then there's hell to pay a couple days later once my bowels start moving again. With Viberzi I take it every day and there is no risk of diarrhea and my bowels never stop moving as long as I eat enough fiber.


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## dekkalife

Got another update for us?


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## hopefloats

A little history on me: After 12 or so years of being DX'ed with what was called IBS-C initially and then IBS - D I finally found a GI doc who breath tested me for lactose intolerance, Fructose Malabsorption and SIBO (Small Intestine Bacterial Overgrowth). Simple breath testing that could have been done years earlier! I didn't test positive for lactose intolerance, however I can not tolerate lactose. I tested postive for Fructose Malabsorption and SIBO. The double whammy! I was so sick. I have had a number of Rifaxamin treatments. I always feel better afterwards, but there is always some bacteria that is left in the small intestine and eventually it colonizes and I'm back to square one. I have been on the Low-FODMAP diet for about 4 years. There's a learning experience for you, but if I keep to the safe foods and the right portions (it's cumulative) I do much better. Foods are still being tested at Monash Univ in Australia. This is a very restrictive diet and I try my best to adhere to it. I still have IBS - D symptoms however so I went to my GI doc yesterday for a follow-up after having a Gastric Emptying Study done. She feels it's very rapid (dumping syndrome) and talked to me about Viberzi and wrote me a prescription. She stated that there is very little information on how patients are doing on it. This will be a trial for me when I get back from vacation on mid Feb. I will check-in and let you know what I think. If the medication doesn't help she said there are some sort of injections I can give myself. Didn't ask any questions about that. One step at a time. I sympathize with you all.


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## dekkalife

I've had a similar history. Positive fructose and SIBO, but only marginal improvement with FODMAP and rifaximin (side note: I was a student at Monash Uni!) I tested negative to lactose, but I react poorly to lactose free dairy anyway. Waiting for Viberzi to be approved here in Canada.


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## JonSnow

I went ahead and had the doc reduce my dosage from 100 to 75. Even at 75 it's still too strong and causes constipation unless I eat a lot of fiber/unsafe foods, which still causes pain and gas. Unfortunately the drug is still too new for the doc to know if the pills can be cut and 75mg is the smallest size. I did have a beer and pizza while still on the 100 dosage. The next day I went the bathroom 4 times, with some urgency, pain, discomfort etc. It felt like it does when I have diarrhea, except maybe a little milder. But the weird thing is the poo was solid as a rock.

I have a few options going forward. First, I will keep taking Viberzi but return to my safe diet and take a fiber supplement instead of gorging on fiber foods. This doesn't really get me anywhere since I'd still be eating a safe diet, and the whole point of Viberzi for me is to expand my diet. I'm just doing this to see what happens, and hoping if it works that maybe it would also allow me to sneak in an unsafe meal every once in a while. The second option is to wait and see if the pills can be cut and try a smaller dosage. The third option is to combine drugs. Viberzi firms up my stools. Amitriptyline reduces my pain but I can't take it or Nortriptyline at the moment (long story). Ultimately I hope to find help with low dose Viberzi and Nortriptyline. Not to derail the subject with different drugs, but I also recommend trying Enteragam if you haven't already. I may go back to it.


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## Beauch

I started on Viberzi last week at the 100 mg. I went from having loose stools and diarrhea most of the time for the last 9 to 10 months to never feeling like I have to go. Didn't go at all first and second day. Then I panic'd and stop taking it and finally had a BM on the third day. One complication that I have is that I have back problems and I typically take one low strength Percosett at bedtime. I know the literature indicates that I shouldn't take the two at the same time so I will try to go without the percoset and maybe just take more gabapentin. Anyway I have cut my dosage of verberzi in half (breaking 100 mg tablet in half). I am going to try to work more fiber into my diet. I had avoided fiber as it used to make the IBS-D worse. On Superbowl Sunday I actually ate some buffalo dip that normally would have sent me straight to the bathroom. Currently my cramping has been pretty good, very little bloating and a lot of gas (which is fine because I am able to pass it. I will keep everyone updated on my progress.


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## njstomach3

I may be able to shed some light on this drug. I was one of the participants that chose to partake in the trial study for Viberzi. My trial lasted 6 months. I suffered from IBS-D for the better part of my life. I am a young (29 year old) healthy guy otherwise. I was at an all time low when i came across the opportunity to be part of this, I didn't blink an eye. While on the medicine, it didn't completely eliminate the D but it cut it down by at least 80%. I still had gas but gas can be dealt with. It quieted my gut and gave me back my life. It gave me the confidence to be more social, hold a job, work out, etc. I felt i could at least maintain a normal life. The biggest side effects were constipation and gas (sulfur smell). Once off the drug my symptoms returned but i learned not to panic as much, the drug in some weird way altered the way i handled my attacks. I don't believe there is any miracle drug for what we suffer from nor do i think that miracle drug will ever be invented. However, i do believe drugs such as Viberzi can help us all maintain and perhaps get us back on track to enjoy life. Some of you may be wondering how did i know i was on the actual drug and not a placebo? After i finished my trial i got in touch with someone from the drug manufacturer in regards to when the drug would be released. We formed a bit of a professional friendship and after giving my information to him he confirmed i was indeed on the drug and my dosage was 100 mg. For anyone suffering its at least worth a try. Give it a full month to really show its true effects. Good luck to all and please feel free to respond with any questions.


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## dekkalife

Will you be continuing with Viberzi?


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## njstomach3

yes, i will be going back to the doctor to get a script for it. It was brought to my attention this past week it had finally been approved to the public.


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## lookingforcure

I have been waiting literally for years for this med to come onto the market, and will hopefully be trying it soon! In the meantime, I would love to hear more stories.


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## Beauch

Just to continue to update you. njstomach3's experience is similar to what I am experiencing. My dairrhea is completely under control on this drug. I have a lot of gas which I still suspect might be the result of SIBO. I have formed stools for the first time in over a year. I am increasing the variety of food that I eat especially salad (raw vegetables used to be a problem) in an effort to get more fiber in my diet. I highly recommend trying this drug if you have IBS-D.


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## dekkalife

I am very tempted to take the 2 hour bus ride to the US to see if I can have it prescribed.


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## CalculatedRisk

New member here on the forum. I am M-24 and have been dealing with IBS-D for a year and a half. Until very recently I had no idea what was going on. Symptoms started overnight and resulted with extreme urgency and basically me running to the bathroom. My episodes would range from 5 days a week to 0 days (if I was on vacation and sleeping 10-12 hours a day everything was fine). During a bad day my sympoms included gas, bloating, constant D every time I ate, and pretty severe abdominal pain. I tried various probiotics (have not tried Align yet) and fiber supplements but none of those seemed to help. Immodium worked decently in order to mitigate an episode but it did not do anything for the abdominal pain and would often lead to C.

All tests came back negative (colonoscopy, endoscopy, blood test) and so I was diagnosed with IBS-D approximately 3 weeks ago. Luckily my gastro knew about Viberzi and recommended it to me right away. Since I have been taking it my urgency is about 99% gone. I have been eating almost whatever I want and only one meal triggered a trip to the bathroom (but it was a greasy chilli cheeseburger so I guess I was asking for that one). I will echo what other members have said, if you suffer from urgent D as a primary symptom I highly recommend this drug. It also has gone a long way to greatly reduce the abdominal pain. It is now much less frequent and at a point where I dont want to double over in pain when it strikes. The only thing that this drug does not address is the gas. I still have quite a bit of gas buildup but that is soo much better than needing to run to the bathroom. There have been a few days where I had enough gas to think I needed to use the bathroom but it was all just air. My dose is 2x a day at 100mg. I may ask my gastro to down the dosage to 75mg, will see how these next weeks go. If anything changes I will leave an update here.

For anybody who does not already know, Viberzi is offering a free month's supply when you register online at this website. On top of that you are guaranteed to get $30 monthly prescriptions for the next year. I just took the card to my pharmacy with my prescription and did not have any problems getting my first month for free.

https://activatemysavings.com/viberzi/


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## kenvh

are here people with sibo-d that have some success with this viberzi?

will it be released in europe also?


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## cmgross069

After have IBS-D since my gallbladder was removed in 1983. I have been on bentyl and Questran; Lotronex and leaving, and now I am on Viberzi and codeine. For quite a few years, Lotronex worked for me reasonably well. By that I mean I could go a couple of weeks without an episode. Then it stopped working so well with episodes every week. Now that Viberzi is here, my Gastro doc has me trying it. When she gave me free samples, those seemed to work. Now that I had to go off and wait for my insurance to get involved, these three days of taking it are terrible. I have had D every day so far. I hope it improves the longer I am on it.


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## dekkalife

Can anyone comment on whether it has a similar fatiguing effect that some people notice with Imodium?


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## Jimbo40

Hi Everyone,

New to this for forum, but unfortunately not new to IBS. I am on day 2 of Viberzi and I am constipated. I guess I need to call my gastroenterologist tomorrow as it is a side effect. Anyone else experience this?


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## Carole Williams

Went for my annual wellness exam last week, and my PA recommended Viberzi and gave me samples. It's only been a few days, so I'll have to update, but so far it has reduced pain and diarrhea. As others say, gas seems to be increased, but one day I took Gas-Ex and that helped greatly. No constipation, firm stools. Stay tuned!


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## lookingforcure

Wow, very encouraging to hear these stories! I'm hopefully seeing my gastro doc soon to get a script. One question for you all: for people who are finding relief, how effective was Imodium/loperamide for you before? Imodium has been a lifesaver for me over the past few years, but now I'm finding I have to take over a dozen per day just to get the same effect that 5 years ago I got with one per day (I assume because of growing tolerance). So I'm just wondering, how many imodium were people taking before, and has Viberzi allowed you to stop taking it?


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## laerm

Hello -

Not to be a wet blanket, but I had asked my gastro doc about this and he said he was surprised they let it onto the market because of how many drug interactions it had. For one, he said you'd have to go off it if you ever needed to take a lot of the common antibiotics.









Micah


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## ZenDada

I'm now on Viberzi as well. For me, it's a cure. Without meds, I had up to 20 watery diarrhea attacks a day and had frequent accidents. I was on Robinul and Lomotil both, with only moderate relief - and I still could not eat vegetables or drink coffee without getting diarrhea.

I have no side effects from this drug. I poop a normal, formed stool once or twice a day. I can eat most vegetables! And I can take a few sips of coffee.

For the first time in 40 years, I feel like a normal person.


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## Athan

Very, very promising !!

What's the prediction for Europe circulation ? Anyone knows ?


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## rpmljm

Hello,

I was wondering if anyone has noticed worsening symptoms when beginning Viberzi. I started it 3 days ago and I am having more problems with leakage and I still have the D. I do not see any improvement yet. How long does it take to notice a change for the better? I have had this for so many years. I tried the Xifaxan which didn't help me before trying this. I have also tried just about everything else. Thank you!


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## GinaG

I have the same question as rpmljm... I've been on Lotronex for over 10 years. Recently, it seems to have lost its effectiveness. I've had to supplement with Imodium, etc.

My doctor recommended trying Viberzi, so on Wednesday, I stopped the Lotronex and started Viberzi. D is worse than ever!! Are there any other women who've tried Viberzi instead of Lotronex?

Even with Lotronex seeming to not be as effective as it used to be for me...it's still way better than what I have been experiencing the last few days! 

I'm not sure how long I should give this a try before giving up and going back to Lotronex. I'm already late for work today, because I couldn't get out of the bathroom!!


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## Joshua Ingle

I got a prescription for 75 milligrams. So far I'm on day 2 and has not done a thing for me. How often do you take your pills every 12 hours?


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## rpmljm

GinaG...I have a call in to my doctor about this. I have not heard back from her yet. Maybe she's not in the office today, not sure. I'll let you know what she says. I called the company that makes it. They would not recommend anything medically as far as advice. They only quoted me what happened in the blind study that was done, and that was that the drug had the most effect after 1 month. I don't know about you but I'm not giving it that long unless I start to see improvement. I'm just glad I have good insurance because I see that for my 90 day supply, the cost is over $2,600. I only had to pay a $20 co-pay, thank heavens!


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## rpmljm

Joshua Ingle said:


> I got a prescription for 75 milligrams. So far I'm on day 2 and has not done a thing for me. How often do you take your pills every 12 hours?


I take it with breakfast and dinner since it needs to be taken with food. I have 100mg.


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## Joshua Ingle

How long did it take to work.


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## rpmljm

Joshua Ingle said:


> How long did it take to work.


See above posts...almost a week so far and I seem a bit worse, not better.


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## GinaG

I also have the 100mg 2x a day with food.

I called my doc today, and he told me that if it was going to work for me, it would have by now, so I hung up and took my Lotronex!!

I was hopeful, but it looks like Viberzi will not be for me.

And yes, I too have great insurance that pays for both as Lotronex is even more pricey than the Viberzi!!

Good luck...hopefully, you find something that works.


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## rpmljm

GinaG said:


> I also have the 100mg 2x a day with food.
> 
> I called my doc today, and he told me that if it was going to work for me, it would have by now, so I hung up and took my Lotronex!!
> 
> I was hopeful, but it looks like Viberzi will not be for me.
> 
> And yes, I too have great insurance that pays for both as Lotronex is even more pricey than the Viberzi!!
> 
> Good luck...hopefully, you find something that works.


Oh brother...I'll wait to hear from my doctor, but I guess it doesn't work for me either then. My doc will not prescribe Lotronex. We have discussed that already. I just wish I could give this $2,600 worth of med. to someone who cannot afford it. Such a waste to throw it away/turn in to pharmacy.

Thanks.


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## CalculatedRisk

I began to see positive results from vibersi within 24 hours. The drug has only become more effective over time (about a month now). I am on 100mg 2x a day. Sorry to hear that the drug is not affecting many of you.

I am not sure why anybody would pay $2600 for this drug when they are offering a year supply for $30 a month. I posted a link to this offer in my previous comment.


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## rpmljm

CalculatedRisk said:


> I began to see positive results from vibersi within 24 hours. The drug has only become more effective over time (about a month now). I am on 100mg 2x a day. Sorry to hear that the drug is not affecting many of you.
> 
> I am not sure why anybody would pay $2600 for this drug when they are offering a year supply for $30 a month. I posted a link to this offer in my previous comment.


I didn't pay that much. My 90 day co-pay was $20, but I noticed when checking my statement from my prescription company that the cost of the drug is normally over $2,600 if someone has to pay without insurance. It's good to know that people can get it for $30.

I stopped taking it 2 days ago because I was worse.


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## GinaG

rpmljm said:


> Oh brother...I'll wait to hear from my doctor, but I guess it doesn't work for me either then. My doc will not prescribe Lotronex. We have discussed that already. I just wish I could give this $2,600 worth of med. to someone who cannot afford it. Such a waste to throw it away/turn in to pharmacy.
> 
> Thank


I assume you are male then, since your doctor won't give you Lotronex. That is a bummer...I'm so sorry.

Before I had Lotronex, I kept things "sort of" at bay with 1 daily Imodium (more if I knew I'd be in a risky situation), 2 pills 2x/day Caltrate "purple bottle" (calcium post by Linda), eating banana every morning, etc. Not ideal at all, but I could sometimes at least predict or delay an episode.

I also got involved in clinical studies/trials at UCLA to be at the forefront of any developments.

I totally had the same thought with this leftover Viberzi! Such a waste!


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## rpmljm

GinaG said:


> I assume you are male then, since your doctor won't give you Lotronex. That is a bummer...I'm so sorry.
> 
> Before I had Lotronex, I kept things "sort of" at bay with 1 daily Imodium (more if I knew I'd be in a risky situation), 2 pills 2x/day Caltrate "purple bottle" (calcium post by Linda), eating banana every morning, etc. Not ideal at all, but I could sometimes at least predict or delay an episode.
> 
> I also got involved in clinical studies/trials at UCLA to be at the forefront of any developments.
> 
> I totally had the same thought with this leftover Viberzi! Such a waste!


No, I am not a man, but my doctor will not prescribe it for safety reasons I believe. When I take immodium, I take 3 at a time. They don't help much. I do take calcium citrate. A banana every day did nothing either. I take Benefiber twice a day and a probiotic with dinner.


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## CalculatedRisk

rpmljm said:


> I didn't pay that much. My 90 day co-pay was $20, but I noticed when checking my statement from my prescription company that the cost of the drug is normally over $2,600 if someone has to pay without insurance. It's good to know that people can get it for $30.
> 
> I stopped taking it 2 days ago because I was worse.


It would definitely feel outrageous to pay that much money for a drug. Hopefully you can find something that works for you.

After reading many other people's stories I have come to realize my IBS is somewhat mild in comparison. Perhaps that is why viberzi helped me out so much. I was living in constant fear every time I ate as it appeared I had a 50% chance of an "attack". Then I read how some people can't sit in a car for 15 minutes without having an emergency stop. I have so much sympathy for these victims. Hopefully a cure will be found soon.


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## spartanrob

I'm on day 3 of Vibrezi and do feel like things are firming up. I woke up in the middle of the night with stomach pain and flu like symptoms. I'm curious if this could be a side effect or a coincidence.

Anyone else get flu like symptoms when starting Viberzi?
How long did it take for you to feel full, positive effects.


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## Inneedofadvice

I've been suffering severely for years (daily severe symptoms) I've tried every medication until now ... I'm on my 3rd week of viberzi treatment 100mg 2x a day. It has literally changed my life. No more urgency,pain,attacks,discomfort... Nothing... If you have the option to try it. You really should


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## rpmljm

Inneedofadvice said:


> I've been suffering severely for years (daily severe symptoms) I've tried every medication until now ... I'm on my 3rd week of viberzi treatment 100mg 2x a day. It has literally changed my life. No more urgency,pain,attacks,discomfort... Nothing... If you have the option to try it. You really should


It's great that this is working for you. How soon after you started it did you notice that it was working? Did you have a period of time at first when your symptoms got worse? I used it for a week and had to stop because I was worse, so I wondered if I should start again and just power through the rough part.


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## ZenDada

I'm completely cured on Viberzi. 35 years of explosive watery diarrhea 10+ times a day. I was on Robinul and Lomotil 6 times a day with modest relief so long as I avoided salad and coffee. But the pain never went away, and I had accidents at least once a month.

Now I can eat anything I want. I usually poop a firm stool once a day at a predicted hour (after I wake up and long before I leave for work). Even if I feel like I have to go, I can hold it for a long time!

No urgency. No accidents. No pain. No diaper bag. No missed outings with friends. No planning trips around bathroom stops. The only side effect is that I feel slightly high for an hour after I take it. My insurance covers it with a fax from my doctor to BCBS.

If you have not tried this drug, do it.  Now. IBS-D is a thing of the past. I am an EX sufferer of IBS-D. At 60, I am finally just a normal person like everyone else.


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## Athan

In the chance that a Viberzi representative is in this forum, does the company have an estimation on Europe release ?


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## rpmljm

It's wonderful for the people who this med. has helped. It is surely worth trying. However, remember in the studies that were done on this rug, it helped about 30% of those who tried it. I and someone else on this thread saw worsening symptoms when we took it. I'm not sure how common that is. Needless to say, I was disappointed and stopped taking it. It took me about 1-2 weeks after that to return to my previous IBS-D condition. When I told my doctor, she didn't have any idea why that would happen. Since it's a new drug, I guess new things will become evident in time. It is my opinion that since IBS is caused by different things in different people, it would only work in those who have similar causes. I have no idea what causes mine. Go figure!

I hope others who try it will have good results.


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## ZenDada

It's worth noting that I had a colonoscopy a week before I started treatment. The prep was brutal. They made me prep twice, two days in a row. I actually think that might have helped as well - possibly because it washed out the bacteria I suspect exacerbate (if not cause) this condition - and because I had several adenomas removed. I did, in fact, have severe diarrhea during the week between the colonoscopy and the Viberzi treatment. So I'm not sure. But I felt the Viberzi work within hours of beginning treatment. The pain went away in hours. And I didn't poop for two days. After that, I started pooping once a day. Normal poop.

I've had one episode of loose stool after eating a huge salad of kale and arugula. But no urgency. Just...hmmm... I feel like I could go to the bathroom at the time of my own choosing.

I don't like feeling high for an hour after my morning dose (a rare side effect for a mere 2%) so I am dropping to the lower 75 mg dose starting tonight. FYI - do NOT cut the pill in half! Learned that the hard way - and doc confirmed. It has an enteric coating to prevent absorption in the stomach. It needs to get to your gut in order to act locally. Otherwise you'll feel opiated. This is treated as a schedule IV drug because of the rare - but for me, very real - narcotic effect.


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## ZenDada

If you decide to try it, here is the link to the coupon. The first month is free. Then 30 dollar copay. I was spending way more than that on Robinul and Lomotil and depends and soiled clothing and lost work!

https://activatemysavings.com/viberzi/


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## dekkalife

I have my fingers crossed for Viberzi as Imodium gives me some relief and it appears the two drugs are related. Lomotil however (and many forms of antispasmodics or anticholinergics) makes me much worse, and takes a while for the effects to leave my system. It appears that some anti diarrheals simply don't work for some people and can even aggravate symptoms, whilst working perfectly for others.


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## ZenDada

I was on such a high dose of anticholinergics that I had trouble peeing, couldn't sweat (that's a serious threat doing ranch work in the Texas heat), had blurred vision, and my eyes were too dry to wear contacts. I have none of those symptoms on Viberzi. The action is very different, and local to the gut. It is a mu-opioid receptor agonist and delta-opioid receptor antagonist. Anticholinergics act systemically.


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## sportugal

Whoever is taking Viberzi or any other drug with success, Congratulations! IBS-D is what I was recently diagnosed with. I have just been dealing with the symptoms for about 10 years and adapted to life with my stomach issues. Finally, was sick and tired of dealing with it and recently went to the doctor and confessed my dilemma. He first put me on Viberzi. I took it for about a week. The side effects I experienced were dry mouth and tiredness. I looked up side effects of Viberzi and those weren't too common, but I did notice it said do not take if you have or have ever had a problem with alcohol. Well, I'm a recovering alcoholic, 4 years sober, but still didn't want to risk anything so I quickly got off Viberzi. My doctor then put me on Xifaxan. I took 550mg, once a day for 2 weeks and no luck. Actually, my 'D' got worse. I have never had a colonoscopy, so am thinking of just asking my doctor if that should be my next step. I've read most of the comments on this thread and I have never heard of the breath or saliva test. Thoughts? Suggestions? Thanks!


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## ZenDada

Beauch said:


> I started on Viberzi last week at the 100 mg. I went from having loose stools and diarrhea most of the time for the last 9 to 10 months to never feeling like I have to go. Didn't go at all first and second day. Then I panic'd and stop taking it and finally had a BM on the third day. One complication that I have is that I have back problems and I typically take one low strength Percosett at bedtime. I know the literature indicates that I shouldn't take the two at the same time so I will try to go without the percoset and maybe just take more gabapentin. Anyway I have cut my dosage of verberzi in half (breaking 100 mg tablet in half). I am going to try to work more fiber into my diet. I had avoided fiber as it used to make the IBS-D worse. On Superbowl Sunday I actually ate some buffalo dip that normally would have sent me straight to the bathroom. Currently my cramping has been pretty good, very little bloating and a lot of gas (which is fine because I am able to pass it. I will keep everyone updated on my progress.


You should not cut them in half. They are enteric coated to get the drug to your gut for local action. Ask your doc for the 75 mg dose.


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## dekkalife

I hate that doctors are prescribing Xifaxin without running hydrogen breath tests. I think that is the height of ignorance.


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## rpmljm

dekkalife said:


> I hate that doctors are prescribing Xifaxin without running hydrogen breath tests. I think that is the height of ignorance.


Please explain...why should they do that? What info. would that give that would indicate whether or not to take Xifaxan?


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## dekkalife

There are a lot of people reporting worsening of symptoms after taking Rifaximin. It is an antibiotic. The only unique quality about it is that it is not systemically absorbed, so it stays in the gut. If your symptoms are not being caused by bad bacteria in your gut, Rifaximin cannot logically help. Prescribing an antibiotic to someone with diarrhea, at least I believe, is very inappropriate unless you have confirmation they have some form of bacteria overgrowth. Anyhow, this has gone off topic. Apologies, back to Viberzi!


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## rpmljm

Thank you for the clarification. The worsening of my and someone else's symptoms on this thread was after Viberzi, not Xifaxan though. Perhaps there was someone else who had a problem after Xifaxan, I don't recall. I took Xifaxan before trying Viberzi and had no change of symptoms at all, which is why we tried the Viberzi.


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## dekkalife

Yeah I was referencing Sportugal's comment


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## ZenDada

Update from me. I dropped to the lower 75 mg dose. It's great! I don't get nearly so high, and twice a day gives me full coverage. If the 100 feels too strong for you, ask for the lower dose.


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## Jivko qnkov

mellosphere said:


> Hello friends,
> Longtime sufferer of IBS-d here. I have been keeping close tabs on the newest medication to be approved by the FDA for IBS-d, called Viberzi (eluxadoline).
> 
> Per multiple online sources, it is now available via prescription. Looking forward to hearing some stories about how it works. I intend to try it myself ASAP


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## Jivko qnkov

Halloy . I'm new here. Diagnose IBS -D . my live its this syndrome slow. W hats new viberzi? I'm live Bulgaria here not this viberzi. How to get ...send me viberzi the irritable boyel sindrome???? Pls help me.


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## legbuh

ZenDada said:


> Update from me. I dropped to the lower 75 mg dose. It's great! I don't get nearly so high, and twice a day gives me full coverage. If the 100 feels too strong for you, ask for the lower dose.


Hello, ZenDada.

what do you mean by "I don't get nearly so high". Does this drug mess with your head in a way opiates would?

Also, hows the urgency? I'm one of those that when it hits I need to go Now.









I also see it says to be careful with alcohol consumption. Any idea why? I do have a couple scotch's now and then.







I just wonder if this drug is hard on your liver or something.


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## Franco Rosi

hi, from what I understand the Viberzi is a preparation of opium. Now, while admitting that it can be effective, in view of its very own peculiarities, we can be reasonably certain that spent a bit of time will have no effect. In fact it is known that all products derived from opium are addictive, with the aggravating circumstance that it will become necessary to take the "dose" just to be the least worst. ultimately I can not find no use in Viberzi, was for occasional use only when needed it is always to be effective at least as Imodium.


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## legbuh

My GI wrote me an RX for this... although it has to be mailed to me and I have to bring it in.. possibly because of it's opiate derivative. Imodium is as well but these things aren't supposed to cross the brain/blood barrier.

I can't wait to try it. Imodium works ok but I have to take far too many to be "sure"... and even then not so much.

I'd love to get back to the days of my youth when I could wake up, leave and get on with my day instead of sitting on the throne 5 times before heading out and then just worrying if more will come the rest of the day.


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## Carry-On Commander

New to this site, I am male, 70 yrs old, long-time GERD sufferer, with esophageal spasms past two years; IBS-D began about 18 months ago, and it's been more severe in past 12 months.

My gastroenterologist had me try Xifaxin, about nine months ago, and it had no effect. Two weeks ago he gave me samples of Viberzi; after three days on Viberzi the symptoms were reduced, but not eliminated. Unfortunately after six days the severe D symptoms were returning, and today I had to take Immodium to gain some sense of control.

Tomorrow I will send him a message to ask whether I should give the Viberzi more time, or just conclude that this won't work for me.

On the positive side, no noticeable side effects at this point.


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## Mes3

Hi I'm new to the sight. Diagnosed with IBS-D about a year ago and I'm at my wits wend! How do people live with this disease? There are so many things I just won't even do anymore because I know I won't be near a bathroom. It's debilitating. I have the Viberzi but have been afraid to try it. I read somewhere that people without a gallbladder should, only take it in low doses and that kind of scares me. I also read it could cause issues with the pancreas. Anyone know how safe this drug really is? Side effects? Does it cause bad constipation? Does it work? I'm a 48 year old female, had gallbladder removed about 5 years ago and my issues got better for a about year after that, then much worse, thus the IBS diagnosis. Looking for any advice on things that work and how to cope. Thanks.


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## dekkalife

Have you tried cholestyramine? Works well for diarrhea caused by gallbladder removal.


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## garciastudios

I've been suffering with IBS for quite a few years now and have tried soo many different things. Long story short, I started Viberzi this past Saturday and because of what I've read on this string, I cut it in half. 50 mg per dose since it was given to me as a 100mg pill. That being said, it really, really made me tired, I felt totally drugged and could not drive or even function properly each day. My mind slowed and my head was really spinning last night. My wife and I even cut the 50mg again, in half, so it was a 25mg last night and that still really affected me.

I could not take it this morning as I had to drive to work & be able to function during my work day.

I do think it started to firm up my stool a bit but I just can't take the horrible dizzy, lethargic feeling, tired feeling that the drug gives me. Maybe I should try just the 25mg slice, at night only, since it has such a big effect on my mind and body?

I'm 45 years old, 190lbs, 6'2" but all medicines seem to really affect me a lot.

Has anyone else experienced the immense tired, dizzy, lethargic effect from Viberzi?

===============================================================================

UPDATE : 5/3/16

I got the 75mg pill from my Dr and thank the Lord I used the coupon suggested earlier on this site as it was free. Because, it had the exact same effect. I got horribly dizzy, lethargic and could barely keep my eyes open. Much too strong for me so I had to stop it after 2 days. It's a shame because after just 2 days, taking only 1 pill at night, I could notice a difference in my stool. Alas, it's not worth it to be inoperable just to have hardened stool. So I'm back to the weekly routine of Imodium roulette. I take it about once a week and hope to still move stool through my system until the next attack occurs. Viberzi is too strong for me so I can't use it. :-/ And I was praying this new drug would buy me some FREEDOM! :-9


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## garciastudios

rpmljm said:


> Thank you for the clarification. The worsening of my and someone else's symptoms on this thread was after Viberzi, not Xifaxan though. Perhaps there was someone else who had a problem after Xifaxan, I don't recall. I took Xifaxan before trying Viberzi and had no change of symptoms at all, which is why we tried the Viberzi.


I also tried Xifaxan a few years back and it did nothing for me as well.


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## jaumeb

garciastudios said:


> I've been suffering with IBS for quite a few years now and have tried soo many different things. Long story short, I started Viberzi this past Saturday and because of what I've read on this string, I cut it in half. 50 mg per dose since it was given to me as a 100mg pill. That being said, it really, really made me tired, I felt totally drugged and could not drive or even function properly each day. My mind slowed and my head was really spinning last night. My wife and I even cut the 50mg again, in half, so it was a 25mg last night and that still really affected me.
> I could not take it this morning as I had to drive to work & be able to function during my work day.
> 
> I do think it started to firm up my stool a bit but I just can't take the horrible dizzy, lethargic feeling, tired feeling that the drug gives me. Maybe I should try just the 25mg slice, at night only, since it has such a big effect on my mind and body?
> 
> I'm 45 years old, 190lbs, 6'2" but all medicines seem to really affect me a lot.
> 
> Has anyone else experienced the immense tired, dizzy, lethargic effect from Viberzi?


I don't know if it is ok to cut the pill. If it has some coating, cutting it could change the effects of the pill as the drug is absorbed in the wrong place.


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## Eternity78

garciastudios said:


> I've been suffering with IBS for quite a few years now and have tried soo many different things. Long story short, I started Viberzi this past Saturday and because of what I've read on this string, I cut it in half. 50 mg per dose since it was given to me as a 100mg pill. That being said, it really, really made me tired, I felt totally drugged and could not drive or even function properly each day. My mind slowed and my head was really spinning last night. My wife and I even cut the 50mg again, in half, so it was a 25mg last night and that still really affected me.
> I could not take it this morning as I had to drive to work & be able to function during my work day.
> 
> I do think it started to firm up my stool a bit but I just can't take the horrible dizzy, lethargic feeling, tired feeling that the drug gives me. Maybe I should try just the 25mg slice, at night only, since it has such a big effect on my mind and body?
> 
> I'm 45 years old, 190lbs, 6'2" but all medicines seem to really affect me a lot.
> 
> Has anyone else experienced the immense tired, dizzy, lethargic effect from Viberzi?


Hi..i contacted the FDA about this issue (cutting the pill in half ) they replied that it is not recommended to cut it in half since it has an enteric coating to allow to open and work only when it reaches the gut , since you cut it.. it means that the pill will start working earlier and strong side effects will effect the body sooner and stronger than when taken as a whole.Best choice is to take the 75mg dosage without cutting it and notice if there are fewer side effects .I have the viberzi but still didn'the try it yet because of the many negative feedback I read in here


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## legbuh

I got my RX for Viberzi today but before bringing it in I wanted to make sure of a couple things:

1. That my pharmacy has it. They didn't, but said after I bring in the RX it should be there the next day.

2. That it's covered under my insurance (Blue Cross, Blue Shield). I didn't find it online in their lists so I called. They said it wasn't on their lists either so it's not covered unless the doctor sends in a Formulary Exception (whatever that means) so I contacted my doctor to do that.

It seems every time I want to try something there are setbacks. I don't know how some of you go in and get samples and RXs so quick... Maybe here in the Central Northern states everyone is too busy keeping warm to get any real work done... haha


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## jstezelecki

MES3

Just went to my GI doctor today. He has done several speeches about Viberzi to several medical groups. Yes if you have no gall bladder it is true that you may develop an issues with your pancreas. With 100mg tablet the chances of having an issue is 1 in 1000. He indicated that those with no gall bladder should use a 75 mg tablet. Thank You.

John Stezelecki


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## garciastudios

ZenDada said:


> I don't like feeling high for an hour after my morning dose (a rare side effect for a mere 2%) so I am dropping to the lower 75 mg dose starting tonight. FYI - do NOT cut the pill in half! Learned that the hard way - and doc confirmed. It has an enteric coating to prevent absorption in the stomach. It needs to get to your gut in order to act locally. Otherwise you'll feel opiated. This is treated as a schedule IV drug because of the rare - but for me, very real - narcotic effect.


I'm so glad I found your post. I started Viberzi this past weekend and had cut the 100mg in half to have 50mg in the morning and 50mg at night. It had such a horrible effect on me as I could barely function, stay awake, and my head was just spinning. Then, my wife and I cut the 50mg in half, thinking it was too much, and I felt even worse. Total drugged feeling and just overall incapacitated. I had to stop it on Monday as I had to drive to work and function.

Sounds like I'll have to call my Dr for the 75mg pill and try that instead.


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## garciastudios

Eternity78 said:


> Hi..i contacted the FDA about this issue (cutting the pill in half ) they replied that it is not recommended to cut it in half since it has an enteric coating to allow to open and work only when it reaches the gut , since you cut it.. it means that the pill will start working earlier and strong side effects will effect the body sooner and stronger than when taken as a whole.Best choice is to take the 75mg dosage without cutting it and notice if there are fewer side effects .I have the viberzi but still didn'the try it yet because of the many negative feedback I read in here


Thank you kindly for your reply. I think you are correct about the coating. I will have to call my DR for an Rx for the 75 mg dose. I'm praying it does not give me that 'drugged' feeling that the other one does.

I will say, I only took it 2 days (the half 50mg cut), and it did firm up my stool pretty quickly so that is a good sign. In turn, that does make me want to try the lower dosed full pill. I wish the drug company gave us more options of dosage. Maybe they will after so many people try and give feedback. This site has been so useful and fruitful that way!


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## Mes3

i have not, but I actually had the same issues before the gallbladder was removed. It got better for about a year after, but now it's back.


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## Mes3

I started taking it two days ago, and have been cutting them in half because they gave me the higher dosage ( samples). So far I've had no crazy side effects, except no bm's at all despite eating horribly for the past two days. I'm afraid that might be an issue....


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## legbuh

If you had constant D before that you may want to add more insoluble fiber to your diet (fruit, veggies, etc).

If it was just D caused by eating bad foods or foods you're intolerant too, maybe a med wasn't the best idea vs a better diet. 

Either way, a couple days without going would be wonderful in my book.. haha!


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## IBS2

You may want to discontinue the drug until you have had a BM. You don't want to get into a situation where you develop an intestinal obstruction or have a problem like those associated with Lotronex. You have to learn to adjust the dosage to arrive at a point where your having as much bowel regularity as possible.


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## legbuh

I always wondered if milk of magnesia or some epsom salts taken internally would help a case like this just to get things moving... or if the drug simply shuts down anything that these types of intestinal stimulants work with.

Fleet phospho soda also should do the trick.. I don't know if I ever will take that again (it was pre-colonsocopy)


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## vanilla_bean

ZenDada said:


> I'm completely cured on Viberzi. 35 years of explosive watery diarrhea 10+ times a day. I was on Robinul and Lomotil 6 times a day with modest relief so long as I avoided salad and coffee. But the pain never went away, and I had accidents at least once a month.
> 
> Now I can eat anything I want. I usually poop a firm stool once a day at a predicted hour (after I wake up and long before I leave for work). Even if I feel like I have to go, I can hold it for a long time!
> 
> No urgency. No accidents. No pain. No diaper bag. No missed outings with friends. No planning trips around bathroom stops. The only side effect is that I feel slightly high for an hour after I take it. My insurance covers it with a fax from my doctor to BCBS.
> 
> If you have not tried this drug, do it. Now. IBS-D is a thing of the past. I am an EX sufferer of IBS-D. At 60, I am finally just a normal person like everyone else.


I am so happy for you that I literally want to cry. As someone that has cured their IBS, I think I know the relief you are feeling, but I didn't have to deal with it until the age of 60!


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## HungryAllTheTime

The only thing that worries me about this drug is dependence. Most opioid drugs have severe withdrawal symptoms (that can be dangerous) when stopped. I'm curious to see if there are any long term side effects to Viberzi.


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## PD85

Mes3 said:


> I started taking it two days ago, and have been cutting them in half because they gave me the higher dosage ( samples). So far I've had no crazy side effects, except no bm's at all despite eating horribly for the past two days. I'm afraid that might be an issue....


From what I've read, you should NOT cut them in half. They have a coating that is meant to transport them to the bowels where they won't have the opiod effects you are getting.


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## PD85

So I got my Doctor to prescribe Viberzi, but the pharmacy says they are unable to obtain the medicine and that it is "unavailable". My Health Care Provider, Kaiser Permanent, lists it as available on their website. So despite all this, I am suddenly unable to try this drug. It seems so promising and I have been waiting for this drug specifically for years. I'll keep holding out hope I suppose.


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## legbuh

My insurance didn't have it in their list either. Blue Cross blue shield.

My doc did a prior authorization and I got it. It's just so new it's not on a lot of lists.


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## rpmljm

I have BC/BS Personal Choice and I use Express Scripts mail order service for meds. I had no problem getting the Rx. My Dr. just faxed a prescription and I received a 90 day supply in the mail a few days later. Unfortunately, I had more problems with looser bowels when I took it for a few days, so I stopped. Now I have all this med. going to waste. Too bad I can't give it to someone


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## Cheryl6079

I am new to the site and new to Viberzi. Two weeks so far with lots of bloating and no change in stool consistency. I plan to stick it out for a month to see if my body adjusts.


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## Mes3

I have been on Viberzi for about 3 weeks now, while I am cautiously optimistic, I have noticed a big difference in the frequency and urgency and a big difference in constancy of bm's as well. I am only using immondium or lomoitl less than once a week and am doing pretty great the rest of the time, eating things that are pretty bad for me. I do need to strongly caution users that when it says take with food, it means it. I was headed to the cafeteria the other day, literally on my way out the door, so I took my pill. Then my lunch got derailed by an emergency meeting and I didn't get to eat for 45 minutes or so after taking my pill. I truly thought I was dying, horrible pain in upper stomach, nausea, and severe bloating. It was bad. It took about another hour after I finally was able to eat ( very cautiously ) to start feeling decent again and then I was exhausted from the experience. Maybe I'll take my pills AFTER lunch form now on. (That's the only time I've had an issue with th meds so far though.)


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## WingWave5795

I can't believe I never knew this forum existed! I was dx with IBS-D in 1995 with recommendations of dealing with the symptoms with diet and fiber and anti-spasm meds that I couldn't handle. Imodium or Phazyme would just cause more abdominal pain and bloating so I quit using those OTC's a long time ago. I managed, or just dealt with the issues the best way I could over the years. When I was pregnant I saw a reduction in my issues, but I thought it was because of my hormones and extra iron content in my diet. Six months after delivery I had my gallbladder removed. My doctor at the time thought perhaps that the faulty gallbladder was the cause of many of my issues over the years and I thought so too when my issues weren't as bad afterwards - but that changed after a few months. I was prescribed a different med that again didn't seem to work for me. Fast forward another 2 years and I was having such urgent issues I made another appointment with a Gastroenterologist who prescribed Verbizi. After some insurance issues, I finally was able to start it last Friday. The first 2-3 days I had a lot of abdominal pain localized under my left rib cage and right abdomen as well as severe tiredness but NO urgency issues and I have seen a drastic reduction in my BM's. The pain has eased a bit, nothing like the first 2 days, but the tiredness remains. The GI believes that I had IBS before but after the gallbladder I now have Post-Cholecystectomy Syndrome which Verbizi is good for.

Side effects still lasting after 5 days: severe tiredness/foggy brain, thirst/dry mouth. Taking 75 mg twice daily (with breakfast and last meal of the day).

GI also prescribed Celexa for anxiety/emotional issues.

Cross posting since much would be duplicated anyway.


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## jaumeb

Wing, I am interested in that pain below the rib. Could you please keep us updated about the evolution of this symptom?


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## WingWave5795

jaumeb - the pain was rather intense the first 2 days but has subsided considerably. I mentioned it because it was so localized to specific areas. Even my husband commented about the specificity when I mentioned the pain a few times to him (when I start new meds I try to keep him informed of issues just in case). I can't say the pain has completely stopped, it's just not localized to those specific areas. I attributed the pain to my body getting used to the med but will inform my doctor when I have my check up.

Have you had a similar pain?


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## jaumeb

Wing, many on this forum report pain below the rib. So far we don't have any explanation or effective treatment.


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## WingWave5795

The medication guide supplied with the Rx mentioned increased risk of pancreatitis or a Sphincter of Oddi spasm (increase in liver and pancreas enzymes which inflame the pancreas) especially in those without a gallbladder.

I'm only on day 6 - but the pain has subsided enough to not be an issue.

Has anyone else had feelings of ongoing stomach fullness - enough to not feel ready to eat even with stomach hunger pains?

http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/206940s000lbl.pdf


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## jaumeb

Thanks wing for the additional information.


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## Carole Williams

I've been on Viberzi for three months now, and am virtually cured. I have had one "blowout"--as nearly as I can figure, from eating sauteed apples with the peel left on. I do try to stick fairly closely to my diet--no fat, very little fresh fruit or veggies (just cooked) but now can eat ham, lamb, and now and then beef. When I know a meeting will be stressful, I do take Immodium just as a precaution, but may even drop that. For me, Viberzi has been a miracle.


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## bushja1

It seems to be helping me as well, but I don't like the fatigue side effect. I'm so tired all the time on Viberzi. I'm hoping that my body will adjust. Anyone else experience tiredness on this med? If so, does it subside?


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## WingWave5795

bushja1 said:


> Anyone else experience tiredness on this med? If so, does it subside?


I too experience extreme tiredness with Viberzi and also hope it subsides - sorry bushja1 that I don't know that answer yet either. I'm on day 11 and all I want to do is sleep.


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## Cyparisse

I too suffer from severe IBS-D for the past maybe 13+ years. I also suffer from Acid reflux disease, and have had multiple other GI issues throughout the years. I have tried everything and was taking Imodium and Phazyme every day just waiting for something else to hopefully come along as that was the "best" solution for me to date - none of the other prescriptions worked for me or I had awful side effects. I have just started Viberzi last night. What is weird is that you are supposed to take it twice a day with food as I read today, but my prescription is 100mg once a day with food. I am wondering if that is a mistake? Also, I made the very poor decision to have fast food last night and it immediately did not sit right - ran to the bathroom when I got home. I took the Viberzi right after as I was scared to take it for the past 2 weeks when I was supposed to start it because of possible side-effects. But after the incident with the fast food, enough was enough and I gave in. I took it at about 8pm, still not feeling great from the food mishap. I went to bed at about 10:30pm and by 1:00am woke to be so nauseous and sick it wasn't even funny. I am trying to figure out if it was from the bad food decision or the Viberzi, or both....and if anyone else has had the nausea effect? Because I took it an hour or so before bed, I did not notice anything as far as being tired/drugged, but it does say it may cause drowsiness right on the bottle. Anyways, now I am scared to take it again tonight because of my terrible night I had last night. I almost had to call out of work today being up all night last night.

I am so glad I found this forum! Finally people that "get it"!


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## bushja1

I have felt a little sick to my stomach on Viberzi, but nothing too bad. I had a horrible night last night...Big D in the middle of the night. I have noticed that I get kind of a rebound effect on the med. It stops the diarrhea but when it begins to wear off the diarrhea is back with a vengeance. My biggest problem with Viberzi is still the drowsiness. I have to go back to lomotil when I need to be extra alert.


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## Jivko qnkov

здравейте всички тук аз съм нов в форума.това състояние е истински АД 2 години и 6месеца съм така. живея в българия,моята история е от лекарска грешка причини IBS. в българия няма истинско лекарство.


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## WingWave5795

Cyparisse - "if anyone else has had the nausea effect?"

Yes - I was nauseous at first too. I wouldn't take it so close to bedtime - take it either WITH your meal or immediately after. I had problems at night when I took it and then went to bed. It will take a few days for some of the side effects to reduce - but it's possible the side effects won't completely disappear, just an fyi. Full disclosure-I'm not experienced with the 100 mg dose once a day. I'm taking 75 mg twice a day with meals. I don't have a gallbladder so that's the recommendation for my circumstances.


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## jwanton

I just signed up with this group. I have been on Viberzi for a month now and it is working well for me . Its states not to drink with this med but, we are going on vacation soon and I would like to have a couple of beers . So I was just wondering if anyone out there had any experience with drinking and Viberzi.


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## WingWave5795

jwanton said:


> I just signed up with this group. I have been on Viberzi for a month now and it is working well for me . Its states not to drink with this med but, we are going on vacation soon and I would like to have a couple of beers . So I was just wondering if anyone out there had any experience with drinking and Viberzi.


I don't know yet. I've abstained from my beloved margaritas so far since I've been on the med because the label and instructions state "Check with your doctor or pharmacist before drinking alcoholic beverages while on this medicine".

Will you be seeing your doctor before your vacation? Or can you call your pharmacy?

Things I take into consideration when I'm vacationing and taking medication (any med, not just Viberzi):

Am I with someone trustworthy to know when I'm having a reaction/issue with the interaction?

In the U.S. or near good medical facilities?

Am I limiting my intake to 1 drink day/hour etc? What is recommended limit?

Is the beer/margarita/drink worth an issue while on vacation?

I'd say talk with your doctor to be sure.


----------



## jwanton

WW
Thanks for the comment we will be staying in the US ,will have wife with me,but will not see Dr before going I guess I will just not drink


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## bushja1

I have had a couple of glasses of wine while on Viberzi and it put me to sleep. I've mentioned in my other posts that this drug makes me very sleepy and the wine seems to aggravate this. When I find myself going somewhere where I might have a drink, like a Baseball game or concert, I switched back to lomotil for the day. If Viberzi didn't make me so sleepy I don't think a few drinks would be a problem. I'm still hoping this side effect will go away.


----------



## mellosphere

- for those of you who Viberzi makes you tired, did you experience this while on loperamide? I know I get tired on lope.

- Bushja1: do you feel like Viberzi has a similar strength of effect as lomotil or is it more similar to loperamide?

Thanks!


----------



## bushja1

mellosphere said:


> - for those of you who Viberzi makes you tired, did you experience this while on loperamide? I know I get tired on lope.
> 
> - Bushja1: do you feel like Viberzi has a similar strength of effect as lomotil or is it more similar to loperamide?
> 
> Thanks!


I feel like Viberzi is more powerful than lomotil and way more effective than loperamide. I just wish the side effects would go away. I did feel a little tired on lomotil but nothing like on Viberzi. Right now, I would have to say lomotil is a happy medium. It works a lot better than loperamide without the side effects of Viberzi.


----------



## Dori Peterson

JonSnow said:


> It's time for my weekly update. I've now been on this drug for 2 weeks at 100mg twice daily.
> 
> Stool Consistency: It's really, really, really solid. It's too solid. Even after adding TONS of fiber to my diet, I can do nothing but poo solid chunks - see type 1 of the Bristol stool chart. I think I could probably lower the dose significantly, but I will attempt to stay at this amount until my GI appointment in three weeks in order to see if my body adjusts.
> 
> Pain and Gas: There's still of lot of both. Some of it is due to the fiber increase, which my body is getting used to but still isn't there 100% (it can take over 2 weeks to adjust). However, there are other pains that I can tell are not healthy: these are the pains associated with my IBS. The Viberzi doesn't eliminate these, but it does seem to reduce them. I feel that Viberzi doesn't treat the underlying cause of my IBS, it just masks the symptoms.
> 
> Outlook: The problem is that this drug forces me to eat too many unsafe foods in order to not get constipated. These foods still cause problems in large quantities. I think I can find a reduced dosage that will allow me to eat some unsafe foods, not feel too much pain, and not get too constipated. Balance is key


I take the 75 mg dose once a day which reduced the constipation get effect.


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## jwanton

Sounds good Dori so are you going on your 3rd week or longer?


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## bushja1

I'm on my third week now and I have been helped quite a bit. I still have such extreme tiredness that when I have to concentrate hard or drive in heavy traffic, I switch to lomotil. Another thing I have noticed is that after a couple good days I will wake up with D until I take my next dose. I don't know if it is because the Viberzi had worn off overnight or if I have a rebound effect every couple days.


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## bushja1

Has anyone tried Lomotil in combination with Viberzi? Viberzi works quite well, but from time to time I'm still getting D. I have tried imodium with Viberzi, but imodium has never done anything for me. I know Lomotil is a little stronger and I wonder if this could be a problem when combined with Viberzi.


----------



## SouthernChicklet

I



Cyparisse said:


> I too suffer from severe IBS-D for the past maybe 13+ years. I also suffer from Acid reflux disease, and have had multiple other GI issues throughout the years. I have tried everything and was taking Imodium and Phazyme every day just waiting for something else to hopefully come along as that was the "best" solution for me to date - none of the other prescriptions worked for me or I had awful side effects. I have just started Viberzi last night. What is weird is that you are supposed to take it twice a day with food as I read today, but my prescription is 100mg once a day with food. I am wondering if that is a mistake? Also, I made the very poor decision to have fast food last night and it immediately did not sit right - ran to the bathroom when I got home. I took the Viberzi right after as I was scared to take it for the past 2 weeks when I was supposed to start it because of possible side-effects. But after the incident with the fast food, enough was enough and I gave in. I took it at about 8pm, still not feeling great from the food mishap. I went to bed at about 10:30pm and by 1:00am woke to be so nauseous and sick it wasn't even funny. I am trying to figure out if it was from the bad food decision or the Viberzi, or both....and if anyone else has had the nausea effect? Because I took it an hour or so before bed, I did not notice anything as far as being tired/drugged, but it does say it may cause drowsiness right on the bottle. Anyways, now I am scared to take it again tonight because of my terrible night I had last night. I almost had to call out of work today being up all night last night.
> 
> I am so glad I found this forum! Finally people that "get it"!


I have had IBS-D since bout with Food Poison March 2008. Tried Viberzi 100mg twice a day for 3 days. Stopped me up totally for 6 days. Sooo sleepy I couldn't stay awake. Never any nausea. My Doctor reduced me to 75 mg as needed. I took 1 stopped me up completely for 3 days. Became nauseated after taking first pill and then took 2nd pill on day 7 and stayed nauseated for 4 days straight. Contacted my Dr. and told him I am not taking anymore Viberzi. Nausea is FAR WORSE than gushing daily. :-( Now looking for another cure.


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## WingWave5795

I had my 4 week follow up last week and told my doctor about the pain for the first five days (and intermittent since then), tiredness and extreme heartburn. We discussed and decided to drop from 75 mg twice a day to 75 mg only once a day and take Nexium/Prilosec as needed. So far so good. I still do have tiredness, but it's not as debilitating as the first week or so and sometimes the pain is very uncomfortable but overall the Viberzi is life changing - for the better.


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## melly50

I just came home with 24 100-mg tabs of Viberzi. I'm going to first do a round of Xifaxan, but from what I've read, it might not be a good idea to follow up with Viberzi. I'm not even sure I have IBS-D, or at least not the degree that would be helped by the drug. I have what starts out every day as a normal bowel movement, followed over the next few hours by as many as 2-4 more BMs with increasing crampiness and "muddiness." Never watery. Then by afternoon the pain sets in with or without gas and a lot of distress and shifting of whatever my poor bowels are dealing with. I do not want to become constipated from Viberzi! I've used Bentyl for pain for more than 20 years and I'm up to 25 mg/day without relief. So I'm hoping the xifaxan (my second round, the first about 2 yrs ago) will put me back to where Bentyl works again. Also getting a B complex shot and going back more religiously on FODMAP.


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## knothappy

How expensive is this drug? Does Medicare D cover it ?


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## rpmljm

knothappy said:


> How expensive is this drug? Does Medicare D cover it ?


I don't know about medicare, but I know when I got my 90 day supply (180 tabs.) from Express Scripts, the price on my invoice for the portion that my insurance paid was $2,500. I only had to pay my $20 co-pay.


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## ToYoung

I think that I will need to try this drug! Right now I am on Entragam and take Immodium AD on a daily basis as well as a Probiotic in the evening. I have an appointment with my dr. next week, going to be talking about this with him for sure!!


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## garciastudios

knothappy said:


> How expensive is this drug? Does Medicare D cover it ?


There is a link earlier in this string that was a life saver! It covered the cost of the drug. Viberzi was too strong for me so I can't use it so I'm sooo thankful this discount worked as I didn't have to pay for it. So many times I've paid to try a drug that I didn't end up being able to use but was stuck with the payment. :-/ The link below works!

From page 2 of this string:

"

For anybody who does not already know, Viberzi is offering a free month's supply when you register online at this website. On top of that you are guaranteed to get $30 monthly prescriptions for the next year. I just took the card to my pharmacy with my prescription and did not have any problems getting my first month for free.

https://activatemysavings.com/viberzi/


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## bushja1

I didn't get my first month's supply for free, but my doctor gave me the prescription card and I got it for $30. Good thing too because my insurance doesn't cover Viberzi yet and the pharmacist said the cost would be in the thousands per month. I've cut back to one 100mg pill per day and the fatigue issues are much better.


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## Tammynsins

I've had IBS-D my whole life, I just started on Viberzi and five days in- constipated!! I'm happy actually, I've never known that feeling. I did drink a glass of prune juice and all systems are good again! If this works, I can finally eat the food I ordered- at the restaurant instead of taking it to go. I will no longer dread long trips, or starve myself before a big weekend. I'll keep you posted, hoping it continues to work!! I am only taking 100mg in the morning.


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## jibjab

I have suffered for years with these symptoms. They have gotten worse as I have gotten older and greatly affected my life. A few years ago, I gave in and tried Paxil. It was horrible. I don't want to exaggerate but I felt as if I was on chemotherapy. Extreme nausea and feeling like I was in a dream. The doctor then put me on Lexapro. Very minimal side effects and to my surprise--it worked. I went from having trouble with a 30 minute car ride, to travelling to several different states with no issue. Unfortunately, after about 3 years the Lexapro quit working. I am on day 2 of the Viberzi. My doctor started me on 75 mg two times a day but as a precaution, I just started taking 50 mg each dose.

I have to cut the pills in half. I was given 100 mg samples, there is no way I could swallow an entire tablet. Maybe the 75 mg tablets will be smaller. So far no real side effects. It does seem to be helping but it is extremely early. I noticed that I don't have quite as much of an appetite but I think that is because it slow the GI tract down.

I will check back in after a few weeks.


----------



## rpmljm

jibjab said:


> I have suffered for years with these symptoms. They have gotten worse as I have gotten older and greatly affected my life. A few years ago, I gave in and tried Paxil. It was horrible. I don't want to exaggerate but I felt as if I was on chemotherapy. Extreme nausea and feeling like I was in a dream. The doctor then put me on Lexapro. Very minimal side effects and to my surprise--it worked. I went from having trouble with a 30 minute car ride, to travelling to several different states with no issue. Unfortunately, after about 3 years the Lexapro quit working. I am on day 2 of the Viberzi. My doctor started me on 75 mg two times a day but as a precaution, I just started taking 50 mg each dose.
> 
> I have to cut the pills in half. I was given 100 mg samples, there is no way I could swallow an entire tablet. Maybe the 75 mg tablets will be smaller. So far no real side effects. It does seem to be helping but it is extremely early. I noticed that I don't have quite as much of an appetite but I think that is because it slow the GI tract down.
> 
> I will check back in after a few weeks.


Do not cut these pills in half unless told to do so by your doctor. The info. that comes with them specifically says not to do that since this is a timed-release drug.


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## jibjab

rpmljm said:


> Do not cut these pills in half unless told to do so by your doctor. The info. that comes with them specifically says not to do that since this is a timed-release drug.


Good morning. I am not trying to be argumentative but I really wonder if this is a time release drug? The package insert I was given does not state anything about not cutting the tablet. The inactive ingredient list also does not seem to contain any type of enteric coating ingredient. I was looking into some of the pharmacokinetics and judging by the peak it appears that there is some absorption in the stomach and also from enterohepatic recirculation. The peak is also somewhat rapid for a timed release drug-within 1.5-2 hours. Please don't take my post wrong--I am just reading conflicting information.

Over the weekend, it really didn't help me much. Last night it caused severe constipation for me--worse constipation of my life. I was only taking 50 mg BID. I am going to skip today's dose and perhaps just try 50 or 75 mg a day. My doctor told me that I would have to titrate it.


----------



## jibjab

Just wanted to post a final update. I had a lot of hopes for this medication. However, last week it caused really bad abdominal pain and constipation. I went down to 75 mg a day last Friday. I have had several intermittent episodes of abdominal pain since and last night it was pretty bad. Abdominal pain is new for me--I mainly experienced urgency so I am not going to take any more. However, I am very thankful that Actavis put the time and money in bringing this medication to the market. I have heard good things from others.


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## bushja1

I'm having pretty good luck with this med. I went down to one 100mg pill per day because I couldn't handle the fatigue. Trouble is when I get in stressful situations I still feel the need to have a BM....not near the urgency though. The only part that still really bothers is my guts still churn and it is uncomfortable. Also when I need to be alert and not near any restrooms, I don't take Viberzi, but go back to Lomotil. For some reason it works better in stressful situations, but no so well on a daily basis. Go figure.


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## Shakerhood

I am new here and have had IBS-D for so many years and it continues to get worse and worse, it also creates terrible anxiety and panic attacks. My Doc gave me some Viberzi samples, I took 1 in the morning with breakfast and to my disbelief I got explosive Diarrhea for 2 straight days, my stomach swelled up and I had all kinds of strange abdominal pains, felt faint and feverish. I stopped taking it after that 1 and only dose but then the 3rd day after I stopped I was actually constipated, 4th day after I had a normal formed movement as did the morning of the 5th day after but then things loosened up a little so I took a Lomotil. That 100mg must be just too large of a dose for my body, over the past few days of normal BMs I have been riddled with anxiety cause I felt like the "D" was going to return at any moment. I am going to try breaking a pill in half and then putting it into an empty Gellcap as that should help replace the enteric coating. I will try to update on what happens, cautiously optimistic about it because of feeling better a few days later as it had to trigger something.


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## ToYoung

I am new to this forum, I have posted only a few times so far. I have just started Virberzi just this past Friday(July 22). It was a very rough day for me. I got up and ate a banana for breakfast and took my first dose, then at lunch went out and had BBQ with my husband, before we left the parking lot after eating, I began to get sick to my stomach within two miles I was belining it to the nearest gas station bathroom....could not eat the meal I fixed him for dinner, made me sick. I had the worst stomach cramps I had had in forever...I new I had to eat to take my second dose, so I started nibbling on crackers and then started eating oatmeal, took one bite, went and threw up my lunch...started feeling better in time finished my oatmeal and took my second dose. After all that right at the beginning of taking this meds made me scared I was not going to do well. Granted it has only been a few days so it is very early and I am very hopeful that this will work. My dr put me on 75mg twice daily. (I had my gallbladder removed in April of 2014. So that is the dose I should be on. I have not been sick at my stomach since that first day (or the second morning I was nervous it would happen again) and I have only had one BM since that day, this morning and it was solid, although very little. But I have not eaten a whole lot either.

I do have a question for those who are on this and are doing well, actually a couple questions:
1) how much do you need to eat with your dose, in the mornings? 
2) Do you usually try to take them at the same time?
3) what foods do you avoid? Do you usually eat?

I would love to have someone to talk to on a regular basis if anyone would like to...on here, or Facebook or whatever.....


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## bushja1

I take one a day with a banana for breakfast. I can't take the second one in the evening because Viberzi makes me very sleepy. One is all I can handle. Seems to work pretty well. I still have multiple BMs, but they are formed and I have only had D a couple times since on Viberzi. I get a little bit of abdominal discomfort, but nothing I can't tolerate. The only drawback is the sleepiness for me. When I need to be alert like driving in heavy traffic or want to be able to stay awake longer in the evening I don't take any Viberzi and go back to Lomotil. As far as what I eat....I have found that it really makes very little difference what I eat. Without medication everything gives me Diarrhea. I just eat what I want but in small quantities. I do try to stay away from greasy foods .


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## DogMom3

Hi all, I'm a new poster but have been lurking on this forum for a few months now. It's so nice to see a community of people who really understand what this condition is (though of course I'm sure all of us would rather be posting anywhere but here).

Anyway, I just started Viberzi a few days ago (lowest dose - 75mg 1x per day) and it seems to be working for me. I have tried Bentyl, Lomotil, Loperamide and Imodium and Viberzi has the fewest side effects and highest efficacy out of all of them. I too am getting some abdominal pain but it's localized pretty high up (i.e., stomach rather than intestines) and happens like 8-10 hours after taking it with food. Also getting constipation but I guess that's what it's for. I'm considering adding in some fiber and possibly taking it every other day (is anyone else doing this?) and I've put in a call to my GI doctor about it.

However, I'm really concerned about the cost - I saw the links to getting it for $30/month for the first year but I figured I'd check with my insurance to see what the costs would be like down the road. As it's a non-preferred drug and there's no generic, it would cost me around $250 per month/$3000 per year. I was floored - I've never paid anywhere close to that for medication.

Is anyone else concerned about taking this long term because of crappy prescription drug coverage? I'm feeling so despondent because I finally found something that might work for me but it seems to be cost-prohibitive in the long term.


----------



## ToYoung

bushja1 said:


> I take one a day with a banana for breakfast. I can't take the second one in the evening because Viberzi makes me very sleepy. One is all I can handle. Seems to work pretty well. I still have multiple BMs, but they are formed and I have only had D a couple times since on Viberzi. I get a little bit of abdominal discomfort, but nothing I can't tolerate. The only drawback is the sleepiness for me. When I need to be alert like driving in heavy traffic or want to be able to stay awake longer in the evening I don't take any Viberzi and go back to Lomotil. As far as what I eat....I have found that it really makes very little difference what I eat. Without medication everything gives me Diarrhea. I just eat what I want but in small quantities. I do try to stay away from greasy foods .


ttt

How long have you been taking this? When did the D occur? Just out of the blue or when you ate something bad or overly stressed? Do you have your gallbladder? Are you woman? Sorry about all the questions, just answer what you feel comfortable with. . I have been suffering with urgent D since about March of this year really bad. I am not sure what triggered it. I am guessing since I had my gallbladder out and had went on a diet program with HCG that might of trigger my worst symptoms after getting off of it...and being stressed.. But according to my GI doc to I have the Post Cholo....Syndrome. (I cannot spell it) along with IBS-D....and I am only 52!


----------



## ToYoung

DogMom3 said:


> Hi all, I'm a new poster but have been lurking on this forum for a few months now. It's so nice to see a community of people who really understand what this condition is (though of course I'm sure all of us would rather be posting anywhere but here).
> 
> Anyway, I just started Viberzi a few days ago (lowest dose - 75mg 1x per day) and it seems to be working for me. I have tried Bentyl, Lomotil, Loperamide and Imodium and Viberzi has the fewest side effects and highest efficacy out of all of them. I too am getting some abdominal pain but it's localized pretty high up (i.e., stomach rather than intestines) and happens like 8-10 hours after taking it with food. Also getting constipation but I guess that's what it's for. I'm considering adding in some fiber and possibly taking it every other day (is anyone else doing this?) and I've put in a call to my GI doctor about it.
> 
> However, I'm really concerned about the cost - I saw the links to getting it for $30/month for the first year but I figured I'd check with my insurance to see what the costs would be like down the road. As it's a non-preferred drug and there's no generic, it would cost me around $250 per month/$3000 per year. I was floored - I've never paid anywhere close to that for medication.
> 
> Is anyone else concerned about taking this long term because of crappy prescription drug coverage? I'm feeling so despondent because I finally found something that might work for me but it seems to be cost-prohibitive in the long term.


I too have gotten a slight panic attach when figuring the cost of this drug....and the thought of staying on this the rest of my life, but, hey, if it works, I will for sure work on staying on it. 
I too have only been on this since Friday, July 22nd (4th day now) ((you might read my earlier post on how day one went for me)) since my first day I have not had a BM but I have been getting rumble colon, and tiny bit of gas. Very mild stomach pains....actually today was a very good day for me. I did not feel really tired today like I had, but I do get the jitters on this.
I am not used to eating breakfast, so that is new for me and not sure of how much food I have to eat to consider "eat with food"
I am on 75mg 2 times a day....I am going to give it about another week or just a few more days and if I do not have a BM I will contact my GI Doctor to see if I can get the dose down to one time a day. I have no gallbladder and the 75mg is the dosage that is recommended for people without one.
I still have the fear of having D while I am out anywhere...and even at home, but I can handle it at home....I hope that is over...
BTW, nice to "meet" you!


----------



## Shakerhood

I too am cost concerned about cost, WITH my Insurance coverage they still want over $600 a month. As I mentioned earlier I think the dose is too high for me and will be breaking them in half or thirds and putting them into an empty gellcap, that will help make it more affordable too.


----------



## DogMom3

Thanks, @ToYoung and @Shakerhood. I was able to go out to dinner last night, have a drink (not too much because of the meds) and eat normally without any fear of rumblings/bathroom sprints. My upper stomach began to feel a little uncomfortable about halfway through the meal so I stopped eating for a bit and the feeling passed. Usually when that happens, the feeling doesn't go away until I visit the toilet so that was a huge improvement! I've kind of decided that if this can give me a normal life, it might be worth the cost in the long term.

@Shakerhood, that monthly cost is unbelievable - I'm so sorry. What really stinks is that the patents on new drugs typically last ~15 years so we won't be seeing any generics available for a LONG time. I doubt the price of the drug will decrease without generic competition.


----------



## ToYoung

@DogMom3 I am so glad you are getting some relief. I have been doing okay so far, always a bit scared, always in the back of my mind when I do go out. I have only been to a restaurant once since starting this drug, this morning, and found myself looking for the bathroom! I get the jitters(shakes) on this. Do you find that too? If you do not mind me asking, what did you have when you went out and ate? I am curious of types of foods that we can eat on this.

I woke up this morning to sore bowels/back/lower stomach so I got heat pads and laid down with those for a bit and felt better...also had a SMALL BM, but firm...some cramps while going too but nothing to major.

I did talk to the s morning if I could have the following while on this drug:
Tylenol -yes
Ibuprofen - yes
GasX - yes
Fiber-yes ONLY if you drink enough water.
Just an FYI for those who would like to know.


----------



## bushja1

ToYoung said:


> ttt
> 
> How long have you been taking this? When did the D occur? Just out of the blue or when you ate something bad or overly stressed? Do you have your gallbladder? Are you woman? Sorry about all the questions, just answer what you feel comfortable with.
> 
> 
> 
> 
> 
> 
> 
> . I have been suffering with urgent D since about March of this year really bad. I am not sure what triggered it. I am guessing since I had my gallbladder out and had went on a diet program with HCG that might of trigger my worst symptoms after getting off of it...and being stressed.. But according to my GI doc to I have the Post Cholo....Syndrome. (I cannot spell it) along with IBS-D....and I am only 52!


I am a 65 year old man. I've had IBS-D for close to 30 years. Only Lomotil and now Viberzi have helped some. I am starting my 3rd month on Viberzi. All the diets, over the counter pills, anti depressants, anti anxiety drugs, etc have done nothing for me. I would get D if I ate some bland chicken or a spicy taco...didn't make any difference.

When I did experience D on Viberzi it was in the middle of the night. It may have been something I ate, but I think it was really a rebound effect since I had very little BMs the previous couple days. I do still have my gallbladder. One thing I find troubling. Lately, I find I'm having multiple BMS. Not diarrhea, but uncomfortable. I hope my body isn't getting used to Viberzi and it is losing it's effectiveness.


----------



## ToYoung

bushja1 said:


> I am a 65 year old man. I've had IBS-D for close to 30 years. Only Lomotil and now Viberzi have helped some. I am starting my 3rd month on Viberzi. All the diets, over the counter pills, anti depressants, anti anxiety drugs, etc have done nothing for me. I would get D if I ate some bland chicken or a spicy taco...didn't make any difference.
> When I did experience D on Viberzi it was in the middle of the night. It may have been something I ate, but I think it was really a rebound effect since I had very little BMs the previous couple days. I do still have my gallbladder. One thing I find troubling. Lately, I find I'm having multiple BMS. Not diarrhea, but uncomfortable. I hope my body isn't getting used to Viberzi and it is losing it's effectiveness.


Oh I hope not for your sake, I hope it continues to work for you! Still, no D is still a positive thing! I pray that you continue to do well, keep us updated. I am hoping that this drug will be a good thing in the long run.


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## DogMom3

@ToYoung, I was able to eat a crabcake sandwich when I went out the other night - I get D kind of regardless of what I eat (and almost immediately after taking a few bites of food/finishing a meal) so I am not super careful other than avoiding my known trigger foods - ice cream, greasy/fried food, alfredo sauce - basically anything with lots of fat in it.

I heard back from my GI doc and he wondered if the abdominal pains I was feeling about 8-10 hours after taking my dose was a sign of the medication wearing off. I'm on 75mg 1x per day so it's possible that it wears off by the time evening rolls around. I wonder if that is right because the last few nights I haven't slept well due to intestinal cramping in the middle of the night and I had to wake up early to go this morning.The stools this morning were a bit loose but not D. The night cramps/waking up to go usually only happens when I've been constipated for a few days due to taking lots of Imodium or something so I wonder if it's a rebound effect from the first few days of Viberzi constipating me (which it did).



ToYoung said:


> @DogMom3 I am so glad you are getting some relief. I have been doing okay so far, always a bit scared, always in the back of my mind when I do go out. I have only been to a restaurant once since starting this drug, this morning, and found myself looking for the bathroom! I get the jitters(shakes) on this. Do you find that too? If you do not mind me asking, what did you have when you went out and ate? I am curious of types of foods that we can eat on this.


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## awf5002

I have been on this medication now for 6 months and have seen a drastic improvement in my IBS-D. I know that this is helping me not go to the bathroom 15 times a day but have any of you seen a drastic gain in your weight (20 Pds)? Not sure if this is a side effect of it slowing down the GI tract or if its just because I'm not depleting my body of everything now. Overall I think this medication far out ways any negative side affects.


----------



## ToYoung

@DogMom3 I am a bit confused.....you still get D on the Viberzi?
I do not get the stomach cramps...I take 75mg two times a day...although I would like to cut it down to once a day in time.



DogMom3 said:


> @ToYoung, I was able to eat a crabcake sandwich when I went out the other night - I get D kind of regardless of what I eat (and almost immediately after taking a few bites of food/finishing a meal) so I am not super careful other than avoiding my known trigger foods - ice cream, greasy/fried food, alfredo sauce - basically anything with lots of fat in it.
> 
> I heard back from my GI doc and he wondered if the abdominal pains I was feeling about 8-10 hours after taking my dose was a sign of the medication wearing off. I'm on 75mg 1x per day so it's possible that it wears off by the time evening rolls around. I wonder if that is right because the last few nights I haven't slept well due to intestinal cramping in the middle of the night and I had to wake up early to go this morning.The stools this morning were a bit loose but not D. The night cramps/waking up to go usually only happens when I've been constipated for a few days due to taking lots of Imodium or something so I wonder if it's a rebound effect from the first few days of Viberzi constipating me (which it did).


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## ToYoung

That is great to hear that you are doing so well on this medication and for six months. That is the longest I have heard anyone being on it. What is your dosage? Do you still have your gallbladder? Mine is removed...I am always curious about others with these issues. Do you ever get D on the Verbizi? If so when? Sorry about so many questions...I just want to learn how others are fairing on this....
As to your weight question....I am actually loosing weight...not a lot, but I was a bit heavy so losing anything is fine with me. I have only been on this med for six days now, with two very small, but solid stools...and that I am thankful for as well! Please keep in touch!



awf5002 said:


> I have been on this medication now for 6 months and have seen a drastic improvement in my IBS-D. I know that this is helping me not go to the bathroom 15 times a day but have any of you seen a drastic gain in your weight (20 Pds)? Not sure if this is a side effect of it slowing down the GI tract or if its just because I'm not depleting my body of everything now. Overall I think this medication far out ways any negative side affects.


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## ToYoung

Has anyone else noticed a lot off gurgling and rumbling in their colon after having their meals on this meds? I get a lot of it, usually after my evening meals...maybe because it is the largest meal of my day, I don't know. Before when this happened I would immediately have to run to the toliet, but so far it is just a lot of "noise" and sometimes gas. I have taken gas-x for it but only one...maybe I will try two tonight. The food has been a bit greasy....maybe that is the cause....any input?


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## bushja1

ToYoung said:


> Has anyone else noticed a lot off gurgling and rumbling in their colon after having their meals on this meds? I get a lot of it, usually after my evening meals...maybe because it is the largest meal of my day, I don't know. Before when this happened I would immediately have to run to the toliet, but so far it is just a lot of "noise" and sometimes gas. I have taken gas-x for it but only one...maybe I will try two tonight. The food has been a bit greasy....maybe that is the cause....any input


Yes, I get some discomfort in my intestines. That said, I always have had that even before Viberzi. As far as the weight issue, I haven't noticed any difference. I don't remember weight gain as a listed side effect of Viberzi either.


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## DogMom3

ToYoung said:


> @DogMom3 I am a bit confused.....you still get D on the Viberzi?
> I do not get the stomach cramps...I take 75mg two times a day...although I would like to cut it down to once a day in time.


No D so far but things were unsettled enough yesterday morning that I supplemented with a few Imodium to stop myself up for a 4 hour-long meeting which included lunch.


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## ToYoung

DogMom3 said:


> No D so far but things were unsettled enough yesterday morning that I supplemented with a few Imodium to stop myself up for a 4 hour-long meeting which included lunch.


Unsettled, did you have some BMs that were loose? My doctor told me not to take Imodium with this meds because he wanted to make sure that it will work.
Day 7 and I have had several trips to the toliet today, albeit not totally D, no real urgency, although very loose stools a couple of times and a few times some AL. I am not sure of the cause...I am thinking it could of been a combination of things. I took ibuprofen 200mg last night for a headache, as well as two gas-x pills....or it could be the mild greasy foods that I have eaten this week....I had meatloaf quite a lot this week and fried potatoes twice and then one night I had sun dried tomato chicken with pasta...but that, I did not think was that bad... I just hope it comes to a stop, I have travel plans this weekend. And I had chicken salad sand wit this evening, I thought that would be a safe food. Ugh! I also drank a lot of water yesterday... 64+ oz. I wonder if one can drink to much water?


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## ToYoung

@DogMom3
I can not remember or find......how long have you been taking Viberzi? You dr does not mind you taking Imodium while on it either? Do you only take Imodium occasionly or regularly?


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## bushja1

My doctor told me to be careful taking Imodium while using Viberzi only because it might cause me to become constipated. No fear of that with me. LOL


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## ToYoung

@bushja1 my doc told me not to take it.....or his nurse did when I called when I first got on it. As I said early I have had several trips to the toliet today along with some AL -- very discouraging to say the least, day seven and this! I hope it is just because I pushed the envelope and had to much of bad foods...I.e. Greasy foods. It started out fine and no urgency to full urgency and D....I am going to try to be positive though...
I think that my GI Doctor has not really treated this correctly and am thinking of switching GI doctors....but not sure.


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## DogMom3

My GI doc didn't say anything about Imodium but I pretty much do what I need to do to get through a day - I know my body well enough to tell if it's going to be a good vs. bad day and the day I supplemented with Imodium was going to be a tricky one. I had some cramping and kind of fluffy stools (Type 6 on a Bristol chart) which I don't normally have. Whether that was due to the Viberzi or something else is hard to say.

I have been treating IBSD with loperamide exclusively for about a year now but I have to take large amounts to have an effect and have bloating, dry mouth, dehydration, and lots of drinking/urination on loperamide/Imodium so I wanted to try something new with Viberzi. Only been on Viberzi for about a week.I plan to continue supplementing with Imodium on an as needed basis (e.g., for long meetings, long car trips, etc.) I found that I didn't need to take as much Imodium as I would have had I not been on the Viberzi.


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## ToYoung

I had a rough day yesterday, a couple of trips last night/early morning, then on into about eight this morning. Since then I am okay. Hopefully it is over. I have done some research and read that those who suffer from Ibs-d should not eat ANY onions or garlic....of which I have had in my foods all week! Wish I would of searched that info earlier! So no more of that for me...anyways I have weekend plans and I am praying that I have no problems! Day 8 on Virbezi....today I have only eaten oatmeal and some crackers, hoping this will calm my gut down. I'll keep ya posted....guess I should blog on here....


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## DogMom3

ToYoung said:


> I had a rough day yesterday, a couple of trips last night/early morning, then on into about eight this morning. Since then I am okay. Hopefully it is over. I have done some research and read that those who suffer from Ibs-d should not eat ANY onions or garlic....of which I have had in my foods all week! Wish I would of searched that info earlier! So no more of that for me...anyways I have weekend plans and I am praying that I have no problems! Day 8 on Virbezi....today I have only eaten oatmeal and some crackers, hoping this will calm my gut down. I'll keep ya posted....guess I should blog on here....


Sorry to hear it  The onion/garlic stuff may be related to the low-FODMAP diet. Have you read about it? Here's something on cooking with onions and garlic in particular: http://fodmapmonash.blogspot.com/2015/06/cooking-with-onion-and-garlic-myths-and.html

I don't seem to have strong reactions to onions/garlic (thank goodness since we cook with both frequently) but some people really struggle with it.

Viberzi update: I had another successful dinner out (with some ice cream at the end - usually a HUGE no-no for me) without incident last night. I got a little rumbling post-ice cream for about 5 minutes but I was already home at that point and it didn't amount to anything. I am amazed - I feel like a normal person. Kind of waiting for the other shoe to drop (i.e., for Viberzi to stop being so effective for me) so I'm knocking on wood...


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## WingWave5795

ToYoung said:


> I do have a question for those who are on this and are doing well, actually a couple questions:
> 1) how much do you need to eat with your dose, in the mornings?
> 2) Do you usually try to take them at the same time?
> 3) what foods do you avoid? Do you usually eat?


ToYoung: I've been on Viberzi for almost 3 months now and am loving the ability to live life without the fear of making it to the bathroom in time. To a few of your questions:

1) how much do you need to eat with your dose, in the mornings? I take Viberzi when I eat enough food to offset stomach cramping. For example, if I only eat a container of yogurt in the morning, it's not enough food in my stomach to take Viberzi without a lot of cramping and other issues. If I have toast, oatmeal, eggs or something a bit more, I can take Viberzi. Sometimes with my schedule I won't take the med until lunch when I eat a bit more. However, I do notice that I need to take the med after a few bites of my meal or during the middle of the meal. If I wait too long I can get some side effects like nausea and pain, or it's too late to be effective for that meal.
2) Do you usually try to take them at the same time? No - it depends on my schedule and what I eat (see above). 
3) what foods do you avoid? Do you usually eat? I can eat more foods now, including some not so great for me (greasy or fatty foods) but I'm not hungry for a lot. I get full quicker, so though I eat something substantial (sandwich, chicken, pizza, etc) I don't eat a lot of it at one time. I think I do better with a regular meal and taking the med and then small snacks.

I was initially taking 75 mg twice a day (I no longer have a gallbladder) but was changed (around 4 weeks after starting med) to 75 mg once a day because of heartburn, stomach cramping and abdominal pain. I still have diarrhea at times but the urgency has diminished or is gone entirely if I balance the meds and food right. I have supplemented the Viberzi with Immodium for road/plane trips (it's hard to be on schedule with anything on trips) or days when I know bathrooms are few and far between - which causes some constipation for a few days but it's worked in my favor so far.

I'm not as tired with the med with the reduced dosage. I'm very happy with the med and do hope I will be able to afford it for the long term since now that I know what life is like with it I don't want to go back to what I had been enduring for so long.


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## Penomee

Viberzi takers: please tell me what is a safe diet to take with Viberzi?


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## Mes3

If been on viberzi for almost 4 months now. It works great for the first three months, but now not so much. Anyone else have this experience ? Lomoitl barely even getting it done fo the last two weeks. Had been on antibiotics for a few days a while back and I'm wondering if that could cause that much of an issue. It's an antibiotic I don't usually have a problem with. Getting desperate for solutions. Dr not helping much. Thanks.


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## bushja1

Mes3 said:


> If been on viberzi for almost 4 months now. It works great for the first three months, but now not so much. Anyone else have this experience ? Lomoitl barely even getting it done fo the last two weeks. Had been on antibiotics for a few days a while back and I'm wondering if that could cause that much of an issue. It's an antibiotic I don't usually have a problem with. Getting desperate for solutions. Dr not helping much. Thanks.


I've been using Viberzi for about 3 months and after reducing the dose to one pill a day, I'm doing pretty well. I couldn't handle the fatigue of 2 pills. Lately I have noticed that I have a bm or 2 in the afternoon, but not D. I hope our bodies don't develop a tolerance.


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## WingWave5795

Penomee said:


> Viberzi takers: please tell me what is a safe diet to take with Viberzi?


Penomee: I don't know about a 'safe diet' - are your worried about side effects with food while taking Viberzi or what you can eat with the meds that won't cause D?

As far as what I can now eat, most things are okay but from experience before taking and now being on Viberzi, I still need to stay away from greasy foods and creamy sauces. Fried foods are a trigger for D for me, but I can do 'some' (small amounts). I can't eat 'real' alfredo sauces or some gravies.

I'm happy with Viberzi, most of the time, if I take it with the right amount of food. I will always be hesitant with some rich foods as I'm sensitive any way.


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## PD85

Mes3 said:


> If been on viberzi for almost 4 months now. It works great for the first three months, but now not so much. Anyone else have this experience ? Lomoitl barely even getting it done fo the last two weeks. Had been on antibiotics for a few days a while back and I'm wondering if that could cause that much of an issue. It's an antibiotic I don't usually have a problem with. Getting desperate for solutions. Dr not helping much. Thanks.


If you have D after antibiotic usage it's because your microbiome is either severely depleted or is now altered in such a way that what you eat is not digested properly. Your best bet is to quickly introduce a strong probiotic.


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## JudyVan

Hi, this is my first morning on this forum, although I was on one many years ago. I have had IBS-D for 48 years. I manage with Imodium once a day and some Pepto. I sit on the end of the aisle in church and stand on the end when in choir. I wear maxi pads every day and now carry extra slacks, pants in my purse. It's the pits.

I had to have anti-biotics twice this Spring for a lung and skin infection, and my diarrhea has been much worse. Finally saw a gastro and they couldn't schedule the breath test for SIBO until middle September and we are leaving for Europe for 3 weeks a few days later. Meanwhile there are a lot of things you can't do for that 4 weeks, including taking pro-biotics or even a colonoscopy. They are pushing for that hard, and I am avoiding it; but I finally gave in this morning and scheduled it for mid-August. I think the whole idea is barbaric. They say they can tell a lot from that, including intestinal overgrowth and gluten stuff (also doing an upper scope and biopsy).

Anyway they tried me on Virbezi. I only took it 3 days.

I felt spacey, like narcotics (which it is). I had a firmer stool, but on the 3rd day I had a lot of pain and finally massive diarrhea, liquid diarrhea, so I stopped. It can cause pancreatitis and I was afraid of it because my daughter has long term pancreatitis she got from a botched gallbladder operation and ERCP. Anyway,

The price of Virbezi is $1,000 for 60 pills; but no-one could tell me the cost on Medicare. Might be worth the cost if it worked for me. It didn't. I was afraid of it.


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## Tunabacon1

I heard it was a miracle drug, I definately want to try this and went to my doctor the other day to try it but he won't put me on it since he said it's too new and doesn't feel comfortable with me on it ?? =(


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## Butterfly_inwork

I'm not sure if anyone has had an abdomen left pain, that just gets worst?


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## Bunkey11

Been suffering with IBS-D for the last 16 years. I've never had a great stomach, even as a child, but having my gall bladder removed made everything so much worse. I was on Lomotil for a while and that worked well but eventually became less effective. I've been on cholestyramine which has firmed up my stools a lot but hasn't done anything for the urgency, pain, or incomplete emptying, so I've been taking Imodium. Bentyl did absolutely nothing for me either.
Imodium with cholestyramine helped for a bit but I've had to leave myself hours in the morning so I could try and get most of what was in me out. After a few hours on the toilet and some Imodium, I was usually good for the rest of the day. Not so much anymore. I've had to stop eating while at work so I don't trigger another multi-hour trip to the bathroom! The incomplete emptying seems to be my worst problem. Even when I don't eat a lot of food for a couple days, I seem to have a lot of stool in me!!
Anyway, tried Lotronex but I think my doc started me on too low a dose and told me to stop taking Imodium. After a day and a half, I was in the bathroom for the whole day and had to take Imodium to get any relief. Tried Xifaxin too but that didn't do anything good or bad.
Been on Viberzi for 2 days now with no effect. Taking 75mg 2x a day and doc added Librax as needed for pain. I was worried about side effects since I don't have a gall bladder but so far haven't had any issues. Had a mildly drugged out feeling after first dose but nothing since. Stopped taking Imodium with it and had a terrible day yesterday, just like when I tried Lotronex. I have a feeling that since it hasn't started to work yet, it's not going to, but I'll stick with it a bit longer but take Imodium if needed so I can get to work.
This is so frustrating! I'm 38 F and I can barely get to work. I can't make plans to go out and even running errands hasn't been consistently possible. I'll try and update if this starts working but any advice would be appreciated!


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## Bandit lady

Hello I am new to this forum. I have had problems with diarrhea for many years and had my gall bladder out a few years ago. The D remained and I was taking Questran until this week. I went to the gastro dr. And she put me on viberzi instead. The first day I was very tired and out of it for the entire day. I did not have any D that day though. The second day I was very tired again and had a lot of gas but solid stools. Today is the third day and I skipped the morning dose as I had a lot to do and needed to be alert. well, I had D and very painful cramps as well even though I did not eat anything . I took my pill with dinner tonight and so far no D. The dosage is 75 mg as I have no gall bladder. I plan to take the recommended dose in the morning again because I really want this medicine to work. I really want to live a "normal" life without worrying when I will have to run to the restroom. Actually, I've had D almost everyday for years and barely eat anywhere but at home because of this problem. This makes working difficult as I am a teacher and can not eat until I get home for fear of an attack of the runs or heaven forbid an accident! I just really hope this medicine will be the cure I need to finally live and experience things that most people take for granted- travel, eating out, not spending hours in the bathroom.... 
I have noticed that since on this medication I have some pain in my sides but I'm not sure if this is a side effect or just random pain. I also feel full even though I have not eaten much. 
My gastro dr. Wants me to call after 6 days of being on the medication to see if it is working and to send in a rx. I'm going to ask about the side effects and if they will continue or become less over time. The drowsiness and feeling of being in a daze is concerning to me.


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## WingWave5795

New members - welcome! I hope Viberzi does help for you all. I've been on it since May and it's doing wonders for me. I too have had drowsiness/drugged feeling and pain in my side when I first started the med. Do ask your doctors if those pains/side effects would be 'normal' for you though. I had my gallbladder removed in 2012 so I started with 75 mg twice a day but had a lot of pain in the evenings as well as heartburn so my dosage was changed to 75 mg once a day (for me, in the morning) or if needed, I could take another dose with a evening meal (if I knew it would be something I previously had issues with). So far it's been going great. I do need to make sure I eat enough food for a dose - meaning, I can't just eat a yogurt with the dose or I'll get severe pains/cramping.

Good luck and good health to you!


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## GardenGnome

Just thought I'd chime in with my experience on Viberzi.

I started taking it mid July. 75MG twice a day with food (since I have no gallbladder 75MG is the suggested strength).

Like other people I also experienced some pain. It was kinda around the area of the pancreas so I was was worried it could have been pancreatitis, but I duked it out and after a week I no longer felt that pain. I never experienced that drowsy feeling others are reporting. Occasionally I did feel a little sick, but I think it had to do with what food I took it with. I noticed that if I took it with applesauce I would feel kinda nauseated. If I took it with rice krispies ceral with rice milk I felt fine. Maybe the cereal helped absorbed some of the medicine or something -shrug-.

The first week I took it I had only 1 episode of diarrhea in the morning... just once. Apparently the Viberzi works too good for me. It made me super constipated. I was straining to go every 3 days and it was solid and hard.

Two weeks ago I lowered my dose to one 75MG pill a day. The downside of that is now I have diarrhea every morning. Just once though, which is better than 5-7 times. I'm playing around with calcium and bulking agents to see if I can stop that morning diarrhea, but so far no luck. The calcium and citrucel will put it off for 3 days, but then it's semi-formed mush when I do go.

I think I'll try taking the normal twice a day dose of Viberzi again and try Citrucel with it. I'm so done with diarrhea.

If ever I was owed a divine miracle I would cash it in now to put this IBS back into remission.


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## wvtx87

I've been dealing with what I believe is IBS-D for about the last 8 months. I tried the FODMAP diet with limited success. Compared to others in this forum, it really puts my symptoms into perspective but also afraid of how bad things might get and that this might be a very long-lasting issue for me. I have to say I was surprised that my internist prescribed Viberzi today and even more surprised to read that it was an opiate agonist. She gave me free sample. I have taken 1 100mg tablet and am very sleepy/dopey. I can't imagine taking one in the morning. Based on how my body has responded to opiates in the past, I expect to have constipation and probably will not continue taking it. I'm glad I did not have to spend money for this medication. I hope that for people who have been waiting for this medication for a long time that it will provide some relief. But I will need to try some other options.


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## LoganC_11

ZenDada said:


> I'm completely cured on Viberzi. 35 years of explosive watery diarrhea 10+ times a day. I was on Robinul and Lomotil 6 times a day with modest relief so long as I avoided salad and coffee. But the pain never went away, and I had accidents at least once a month.
> 
> Now I can eat anything I want. I usually poop a firm stool once a day at a predicted hour (after I wake up and long before I leave for work). Even if I feel like I have to go, I can hold it for a long time!
> 
> No urgency. No accidents. No pain. No diaper bag. No missed outings with friends. No planning trips around bathroom stops. The only side effect is that I feel slightly high for an hour after I take it. My insurance covers it with a fax from my doctor to BCBS.
> 
> If you have not tried this drug, do it. Now. IBS-D is a thing of the past. I am an EX sufferer of IBS-D. At 60, I am finally just a normal person like everyone else.


I also have BCBS. What is your out of pocket cost with BCBS? My doctor is filling out the form to send to them now.


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## Trudyg

I've been on Lotronex, increasing the dosage, since it first came out. This past Monday night, I took my first 100 mg dose of viberzi. Didn't sleep very well, got up in the morning and had another dose with breakfast. Had a very soft stool but no diarrhea and felt nausea and sleepy for about 5 hours (not dopey, just tired). Took another dose that night and didn't sleep well even with 5 mg ambien. Wednesday I took both doses and only felt sleepy for 5 hours in the morning, didn't sleep well even on 10 mg ambien. Good bm. So, the nausea seems to have gone away, I hope the sleepiness lessens but, wow, I was not expecting insomnia to kick in. That's why I use the ambien, because I can't sleep and if viberzi counteracts the ambien then what do I do? Also, viberzi side effects list gerd--I already have gastritis, a hernia, and an ulcer--will I have to be on viberzi and nexium forever? Just a few of my questions at the moment. I've had ibsd since I was a child and it would be nice for this to work so I can travel in my old age (I can retire in 2 years). Has anyone had these side effects and did they lessen over time?

To address the coupon with which you only pay $30 per month--please note that anyone with government insurance is not eligible. I have tricare and they disallow this sort of program. With my tricare and bcbs, I pay $50/m for 30 days at 200mg/day.


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## bushja1

Fatigue was a big problem for me, but not insomnia. My doctor told me to reduce to one pill a day. He said to split them and take one half in the morning and the other in the evening. This works pretty well. My problem is that I'm on Medicare and the Viberzi card I got is now refused. The prescription is $900 for a months supply. My medicare supplement now covers about half the cost, but my portion is still almost $ 500 a month. I can't afford that so I contacted the company and hope they can help me with an assistance program.


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## gramx3

Hello- Are there any other suggestions for the cost of Viberzi?

I too am on Medicare and it will only pay about half of $900/month. Discount card or coupon offered by the manufacturer is not allowed by Medicare. I'm not eligible for Medicare special assistance, but cannot afford that cost.

Thank you


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## haverhill

I tried it last year. It's a joke. Doesn't work. Did you happen to notice that one of the side effects is diarrhea? So it's an IBS-D medication that can cause diarrhea...


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## bushja1

I recommend to everyone to a least give Viberzi a try. I have had IBS-D for over 30 years and tried every kind of med and diet with very limited success. Viberzi is the first new drug that has helped me. As I said in my previous posts, my problem is how to pay for it. I can go weeks now with no diarrhea. In fact, I even get a little constipated at times. That is no fun either.


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## Trudyg

So I've been on viberzi for 1 wk tonight. This is soooo very much better than the constant diarrhea I had before, so that's a plus. If I take the pill too far away from food I get nausea. I am also on nexium for my gastritis, ulcer and hernia-- I think my insomnia and muscle cramping is due to nexium and not viberzi, so will call the dr tomorrow. If you can possibly try this, I'd say do it.


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## Trudyg

So now it's been another week and things are changing. I'm having an episode of D about every 3 days, usually middle of the day (very inconvenient at work). Not urgency as bad as before viberzi, but different. My stools are pencil thin and very very soft (messy!) and I need to take wipes with me everywhere. The gas is pretty bad and the smell has changed. I'll continue to take it until my appt in another month, unless things go downhill, but I'm taking an immodium every other day or so if I know I'll be someplace I can't conveniently leave. This is still better than taking the lotronex 1.5/day and still taking 4-5 immodium daily. So, a net plus at this point. I'm still wondering if this gets better for some folks or if it's good right off the bat and then gets worse.


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## DYING2LIV

Hi everyone, just wanted to remark on Viberzi. My doctor prescribed it to me couple months ago, really thought we found a cure. Well unfortunately that wasn't the case. The first couple days it worked but then all it did was constipated me. Now as we all know there's a very strong mental component to this disease. So know ur walking around constipated but yet terrified that u might have to move ur bowels and not be near a restroom. Now this isn't to say it won't work for some people but it didn't help me. I've become phobic , bathroom phobic that is. If I'm home I'll eat anything knowing that bathroom is right there and oddly enough most of the time I dnt need the restroom. Again that's where that phobia comes in. I've basically become a recluse, except for going to work. Since I have know choice but to work as most of us do , I had to develop a system. I get to work 3 hrs before my starting time, 6am to start at 9 am. I eat something , evacuate my bowels and then take Lomotil which gets me thru the day. As long as I'm in work near a bathroom I'm calm. It still affects aspects of my job, as in getting ahead cause my ability to travel or go to meetings in other areas is limited or such a struggle my body wants to shutdown. I've become so stressed and tired of this condition I've given up. Now it's all about struggling just to exist and keep my job. It's a very lonely disease , not many people understand you. When u can't say " oh I have cancer or a heart condition" people just don't understand when u say " I can't control my bowels". Embarrassing , demeaning and isolating. As for relationships, forget it. My last GF of 7 yrs left me cause the disease put immense pressure on our daily life. I did my best to make her happy, vacations, dinners out, weekend trips. But if she only really knew the amount of torment n impact on my mind and body those things put. Well she left cause her words were " well I'm not a nurse". Nurse, shit bitch never took care of me, actually made it hard for me. I understand she wanted to do things but what she didn't realize was so did I. I would ask her to compromise, wanna go to dinner w ur friends , maybe they can meet us being they live 50 miles away or at least halfway. We all know the fear of eating dinner and having to travel 100 miles round trip. She just didn't get it and wouldn't give an inch after awhile. I still managed to take her on several Caribbean vacations a year. But what I had to do to accomplish that left me drained and terrified of the return trip thru the whole vacation. Needless to say she left, funny cause she was a good person in every other aspect but just didn't have that caring, considerate side. O well, live and learn. I wish there was a dating site for people w this disease, I've become so lonely. It's a shame cause I'm a loving , caring person. I have a lot to offer and it's going to waste. I'm sorry for rambling but not many people you can talk to except for people living your pain. Thanks for listening , good luck to everyone.


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## pspal

New to site. I have been dealing with IBS D since I picked up a rotovirus back in 1992 and was 1 month pregnant. Almost lost my baby because of it. At first doctors told me it was all in my head and convinced me to do all kinds of antidepressants. I did antidepressants for many years with no help. In fact, some antidepressants made it worse. Even seen counselors. One counselors recommend I see her husband who was a colon rectal doctor. I did. He examined me and his face dropped. From having babies I had a huge hole no sphincter closure. I cried so hard thinking this was what made me loose my life for at least 10 years. I had the repair went off antidepressants. The surgery helped some but I still have severe abdominal pain and diarrhea. I think I have done everything on this Earth to stop the diarrhea but have no luck especially with meds.

I just recently tried Viberzi. I am a weekend social drinker so I was unsure if I should take but as I researched Viberzi and alcohol the statement was do not take if you drink 3 or more a day. On the bottle it stated to inform your doctor if you drink alcohol while taking so I had one beer. Not sure but probably my own fault, I had at least 10 bm of diarrhea the next day so no more Viberzi for me. Went back to the GI yesterday and told her. Her response was we stated no drinking. I said yes, but it was only one. I think she got made at me and then said she exhausted all she could do for me and know if referring me to a shrink. Guess that's what I get. I was heartbroken. But I stopped drinking for 1992 through 2004 and the diarrhea continued so to me having a few drinks isn't the issue. Even when I wasn't drinking and I would try a new med such as Effexor, I got more diarrhea.

I am at my last straw. I have suffered for 25 years and would like to have my last 25 years if I'm lucky enough enjoyable. If anyone could recommend a IBS D specialist, meds or advice, I would really, really appreciate any help. Sometimes I feel as though I can't do another day or this and wish I could push the expire button.

Please respond anyone ? ? ?


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## mellosphere

I wish i had an answer...i feel like there is some diagnosis out there that everyone is overlooking. It just doesn't make sense that a person like you or me could have chronic diarrhea for years and years without there being some sort of actual physical disease.

sorry to hear viberzi didn't work for you. Seems like it either works well or not at all. It didn't do anything helpful for me but i'm probably going to try it again. Would love to expand my diet and so far that's been impossible.


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## Mjl88

Hey all new here 28 years of age and have been dealing with ibsd for 3 years its a nignhtmare. I have been taking viberzi for aboit a year i think 100 mg twice a day. While it has helped with my diareaha i still go often and still have urges to go frequently. As far as stomach pain gas bloating it doesnt seem to help me much there. I am happy to see others have had success on it tho


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## bushja1

After about 5 months Viberzi is working OK for me. I only take one per day. Half in the morning and the other half later in the day. As I said in my previous posts I couldn't handle the fatigue taking the full dose. One thing I have noticed is that periodically I get diarrhea like a rebound for not going much for a few days. Seems like it builds up and bam, here it all comes out. Like most other medication I guess I have to take the good with the bad.


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## Maximus22

Hi guys! Could you recommend insurance company which is cover Viberzi medication? I'm finally got my prescription, received a Viberzi savings card, but they need insurance to validate it. Living in Florida. Thank you


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## TowneSA

I started taking Viberzi 2 weeks ago. We started with the 75mg twice per day and then bumped it to 100mg twice per day. It is working for me. For some background: my bowels would move constantly and even if I didn't eat I could feel things contracting and releasing in my guts. I was literally partially emptying my bowels 6-9 times per day. All movements were were mostly liquid and the cramps and gas were ridiculous. On top of all that I couldn't keep myself clean because of minor leakage.

Now with these pills I am able to eat 3 meals a day and do not suffer anything like before. The leakage is gone and I now usually only have 2 movements a day. My stools are still very lose and some foods still appear to make things worse on my gut but overall a huge improvement.

For me the only side effect I get is nausea if I take the pills without food.


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## Fivegirls5

Hello everybody I have IBS-D and have had it for over two years, My GI dr. put me on Viberzi and it has tremendously helped. I no longer look for restrooms where ever I go. I no longer have diarrhea 10 to 12 times a day. One problem I am having is my insurance does not cover this medication. By the way I am a GI nurse, I have to constantly bug dr's for the medication. Just wondering if anyone has this problem with their insurance.


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## bushja1

Yes, I had problems. My insurance would only cover less than half the price. It still would have cost me over $500 per prescription. I contacted the company that makes Viberzi, Allergan, They have a prescription assistance program. After much negotiation, I now receive it for free. I


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## WingWave5795

I've been advised to stop taking Viberzi due to the FDA warning of increased risk of pancreatitis (I don't have a gallbladder).







I discussed with the nurse practitioner replacement options and there are none for me other than maintenance Imodium A-D (loperamide hcl)*. * What have others done if you've stopped taking Viberzi?


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## mellosphere

Lomotil? Have you tried that?


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## bushja1

I use Lomotil Imodium doesn't do much for me. Lomotil helps quite a bit but it does require a prescription. I also use Viberzi, but it makes me so sleepy that I switch to Lomotil when I need to drive in heavy traffic or if going out at night and need to stay awake.


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## susango57

Fivegirls5 said:


> Hello everybody I have IBS-D and have had it for over two years, My GI dr. put me on Viberzi and it has tremendously helped. I no longer look for restrooms where ever I go. I no longer have diarrhea 10 to 12 times a day. One problem I am having is my insurance does not cover this medication. By the way I am a GI nurse, I have to constantly bug dr's for the medication. Just wondering if anyone has this problem with their insurance.


I am currently on Medicaid and viberzi is covered. I tried it a few months ago but within a day or 2, I had nausea and then massive cramps/D so I stopped.

I recently was scheduled to have a rectoplexy, but the prep killed me as it always does.. I still had cramping & diarrhea all night and morning and the surgeon wasn't able to operate. It has been pushed back to January2018.

The overreaction to the prep didn't stop for a week, so I started on viberzi again. Was doing ok with it until 2 nights ago, when I suddenly got hot/cold and every inch of my body hurt. I was lightheaded, etc. and it was just a precursor to the next 15 hours of cramping and D. So I've been able to take one Viberzi today(as well as 2 imodium, and will try to get on a schedule again with it tomorrow.. will let you know how things work out...


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## DesperateinTX

I posted in another thread (I'm new to these boards) and then found this thread. I have stopped going to my GI and taking the prescriptions he gave me because they didn't work any better than Immodium (which doesn't work) so now I'm just taking Immodium every night and extra nights when I'm going to run the next day because my movements are so runny that accidents while I'm running are just normal at this point (I've start just wearing a pad...sorry I know that's gross and it's very embarrassing for an adult woman to admit). I really want to try Viberzi with the hopes that maybe it would work for me. Are doctors prescribing it more often now?


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## dekkalife

DesperateinTX said:


> I posted in another thread (I'm new to these boards) and then found this thread. I have stopped going to my GI and taking the prescriptions he gave me because they didn't work any better than Immodium (which doesn't work) so now I'm just taking Immodium every night and extra nights when I'm going to run the next day because my movements are so runny that accidents while I'm running are just normal at this point (I've start just wearing a pad...sorry I know that's gross and it's very embarrassing for an adult woman to admit). I really want to try Viberzi with the hopes that maybe it would work for me. Are doctors prescribing it more often now?


As long as you've got a gallbladder, you shouldn't have trouble getting it prescribed. The problem is that it's very expensive, and seems to either work well or not at all, so it might not be a go-to for doctors.


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## doggo

Hi, just found this forum today and wanted to compare experiences with Viberzi. I'm 20 yrs old and an anxious college student (studying environmental law). Been taking 75 mg twice a day for about a week and a half, and I started feeling 70% better. I have been dealing with IBS-D after a year long c. diff infection (cured by hospital stay and fmt, all while I was still going to class). I thought this medicine was a lifesaver- resolved all of my D and most of the abdominal pain. I haven't experienced any sleepiness or fogginess that some people have mentioned as a result of the medication. Then, yesterday and today my IBS-D symptoms came back worse than ever, and I'm missing all of my classes because I can't leave my apartment. Has anyone experienced flare ups on Viberzi that eventually resolve? I can't believe that this medicine was only able to work for 10 days. Could this bad spell just be something I ate or even a stomach bug?Anyone have similar experiences? I need some hope here.

Thanks!


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## bushja1

I've been using Viberzi for quite awhile now and for the most part it is still working. I've had a couple bad days, but it was probably more due to eating or drinking too much of a good thing.


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## doggo

bushja1 said:


> I've been using Viberzi for quite awhile now and for the most part it is still working. I've had a couple bad days, but it was probably more due to eating or drinking too much of a good thing.


That's good to hear, since my last post I have been feeling a little better every day. Do you use anything like Imodium on the bad days? The drug insert warns not to use it when taking Viberzi but what else can you do when you have a bad day?


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## bushja1

angie.lo said:


> That's good to hear, since my last post I have been feeling a little better every day. Do you use anything like Imodium on the bad days? The drug insert warns not to use it when taking Viberzi but what else can you do when you have a bad day?


Yes, on bad days I use lomotil to help control things. My doctor actually recommended using the lomotil if I was still having trouble on Viberzi. He said it was OK to take a Viberzi in the morning and a Lomotil later in the day if I was still having D. I haven't had any trouble with constipation with the combination of the two.


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## doggo

bushja1 said:


> Yes, on bad days I use lomotil to help control things. My doctor actually recommended using the lomotil if I was still having trouble on Viberzi. He said it was OK to take a Viberzi in the morning and a Lomotil later in the day if I was still having D. I haven't had any trouble with constipation with the combination of the two.


Yep, my doctor told me I could take Bentyl with Viberzi. Is Lomotil similar?


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## bushja1

angie.lo said:


> Yep, my doctor told me I could take Bentyl with Viberzi. Is Lomotil similar?


No. Lomotil is like a stronger Imodium that requires a prescription. I think Bentyl is more of an anti-spasmodic, where Lomotil is to stop diarrhea.


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## ASTORIA

I am a senior and if Medicare ever does not approve my Alosetron that is generic for Lotronex I will most likely take Viberzi.

There is a doctor named Dr. Mark Pimental doing research on IBS. He is on youtube so you can check him out. He thinks he has discovered a solution to our IBS problems. He states there is a bad toxin in our system. He calls it SIBO. I think that he may be getting ready to create some kind of pills to solve our problem. I don't have high hopes but he does so I have to keep my mind open.


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## legbuh

SIBO isn't a toxin. It's an overgrowth of bacteria in your small intestine.


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