# IBS-D RESEARCH DRUG



## refuse to live this way (Apr 25, 2012)

I started on a new Research Drug for IBS-D about 10 days ago. At first it made me nauseous, but they thought maybe my blood pressure med was causing that. I stopped taking the blood pressure med and since then I've been feeling much better. I have gone from having diarrhea every day from 5-10 times a day, to having fairly solid BM's 1-3 times a day. It took about 5 days for it to kind of settle in and since then, not only am I having more solid and fewer BM's, but I also feel better overall. My foggy head thing is fading, and there have been a couple few days that I've actually felt back to normal. I'm not going to hold my breath that this is going to last forever, or that I will never have a flare, but I feel better then I have in 2 years.

The drug is in phase 3 and I'm told it should be available if all goes well by the year 2014. I'm really going to hate having to go off of it when my research time is up and have to wait to get it by prescription, but in the meantime, I'm going to enjoy feeling well whenever I can.

I'm hoping it will help others when it does become available as much as it has helped me so far. I will keep you guys posted on any changes and feel free to ask any questions I might be able to answer. There is light at the end of the tunnel it looks like.


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## SWER (Dec 24, 2012)

Sounds awesome. Looking forward to your updates.


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## Milly1 (Apr 6, 2011)

I'd be interested to know what / how the drug works - is it working on the brain or gut?


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## refuse to live this way (Apr 25, 2012)

You know, I don't know for sure if it is supposed to work on the brain or gut or both, but that is a good question. I go back to the Research GI Doctor on Monday, I will ask that question and let you know what they say.


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## HNat (Apr 7, 2012)

Can you please tell us abt the how you heard about it? I would also be interested in taking part..


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## Kathleen M. (Nov 16, 1999)

If it works for you it may be something you could get a compassionate use waiver type of thing for before it is approved, but I'm not sure all the rules that would regulate that. May be worth asking at the end of the trial.


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## njstomach3 (Aug 7, 2012)

I actually had an apointment set to take part in the expertimental drug but decided to backout due to uncertanity of side effects. Im glad to hear it is working for you, from what i was told half of the particeipants were put on a placebo drug and the other half were put on the experimental. Please keep us updated on if it clears all flare ups and any new side effects, thanks and enjoy the comfort of an ibs free life!


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## TOK-715 (Jul 25, 2011)

Could you tell us what is the name of the Research Drug ? Is it Asimadoline, MuDelta, Ibodutant or something different ?


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## refuse to live this way (Apr 25, 2012)

Thanks Kathleen for that tip, I was wondering if something like that was possible. As far as the name of the drug, I only have a number, JNJXXXXXXX. And the drug actually has 2 different dosages with only 1/3 being on placebo, which I am told will happen with me somewhere along the line. Side effects wise, I haven't found there to be many thus far. I've been somewhat nauseous, but I was already that way, and I have found that as long as I eat something (which is required) both before and after (I take it mid-way between a meal) I can tolerate it a bit more. I'm curious to see (but not looking forward to it) what the results will be while I'm on the placebo. I won't be told it is placebo, so I won't know it. I'm not a big worrier nor do I have a lot of anxiety, so I'm assuming I'll go backwards while on placebo, but only time will tell. It does seem to be helping, and I'm really hopeful that everything goes ok and it will soon be availble to all. I found out about the research project by my GI doctor's nurse practitioner, who I was already seeing, but you can check online to see if the study is being done in your area. The site is www.clinicaltrials.gov/. The company name is Furiex. I would be curious to see if anyone else on this forum would have as good results as I have had so far. I go in this afternoon for my "check-up," I'll let you all know whatever else I find out. Let's keep our fingers crossed.


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## refuse to live this way (Apr 25, 2012)

I'm back from the GI Research Dr. and they were really glad to hear I was showing improvement on the drug. I asked about being able to stay on it after the trial and was told they had not heard anything yet, but there is probably a good chance since they might want to continue monitoring for any additional side effects.

I also asked if the drug is supposed to be working on the brain/gut and was told that it does work on the pain receptors in the brain (which I have had less pain-from about a 6-7 to 2-3), and also on firming up the stool in the gut. They didn't believe it is supposed to work on anything else (anxiety, ect) in the brain. I did have to go off of my anti-spasmodic drug before I started the new drug.

I'll keep you posted on any additional/continual results.


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## njstomach3 (Aug 7, 2012)

sounds like all good news, please keep us informed of your progress


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## muttleytm (Jan 8, 2013)

I was notified of a study for MuDelta and was willing to participate, but, was screened out because I am lactose intolerant. It was a third stage of the study too. Here is a link about the drug: http://www.furiex.com/pipeline/discoverydevelopment-pipeline/mu-delta/


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## jmc09 (Oct 5, 2009)

I am waiting for a start date to take part in the UK trials of this and I'm very glad its helping as it gives me some optimism.

These trials ARE taking place in the UK too so look on the clinicaltrials.gov link given above if you are in the UK and want to take part.


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## jmc09 (Oct 5, 2009)

How is it going on this research drug,is it still helping you?


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## refuse to live this way (Apr 25, 2012)

I've been doing pretty good on the drug. Except for last Sunday night when a bout a diarrhea hit and lasted until Tuesday night. The doctor's office thinks I caught the flu which is at epidemic proportions here in the Mid-West of the US. Other then this, I've been doing pretty well. Usually only 1-3 fairly firm BM's per day with a lot less pain throughout the day. I still feel nauseous on occasion, but I seem to do that with a lot of different drugs. It has been worth it on a day to day basis to not be trapped in the bathroom for half the day. I'll post again in about a week and let you know how it's going. Looks promising.


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## jmc09 (Oct 5, 2009)

Great to hear.

Can't wait to try it here in the uk but it takes ages to do anything over here.


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## njstomach3 (Aug 7, 2012)

i go on monday for my first screening to be accepted into the program, hope all goes well. will keep updates coming as long as im accepted


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## refuse to live this way (Apr 25, 2012)

I've had a pretty good week since I last posted. I did find out the drug name is MuDelta and is having clinical trials in the UK as well. Go to www.clinicaltrials.gov to find out more information. I actually went one whole day without a bowel movement at all, never had that happen. The next day I had just one bowel movement in the morning and it seemed like old times. (I used to be very regular, once evey morning and done). I went to the doctor on Tuesday and got my new supply of medication. I do know that I will get the placebo at some time during the study, but I won't know when. I guess if my symptoms come back I'll figure it out. This drug really does look promising. I just hope any of us can afford it when it comes on the market. Chance are it will be high priced since it is the only one of it's kind. It has been really nice not having daily symptoms. Hang in there guys, help is on the way.


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## BQ (May 22, 2000)

Here is the info page from the Pharm:

http://www.furiex.com/pipeline/discoverydevelopment-pipeline/mu-delta/

Here's hoping it helps many!


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## JessR (Dec 20, 2012)

My work place is doing a study on a research drug. I thought about doing it but, I'm too nervous to try something that new, and plus like you, I would hate to feel better for awhile just to have it taken away until it's on the market. Bleh. I wish they would do something fast because I am over this stomach issues nonsense.


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## jmc09 (Oct 5, 2009)

refusetolivethisway,that is great news.
Your once a day and done BM is the exact way I used to be for the first 24 years of my life an maybe,if the trials go well,the way I will function once more. Fingers crossed for us both.

njstomach,are you joining the trials in the US or UK?

Good luck.


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## jmc09 (Oct 5, 2009)

Just been in touch with my trial centre and I should be ready to start within the next few weeks.


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## jmc09 (Oct 5, 2009)

Ive been told that the trials of this drug dont allow the taking of many medications at all.

Anybody know what medications are excluded barring the obvious anti diarrhoeals?


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## refuse to live this way (Apr 25, 2012)

It is true they limit what other drugs you can take during the study. They don't let you take immodium while you are being screened (first 2 weeks), but you can take it after you start the medication as long as you keep it down to 4 a week or 7 in two weeks. I usually don't take immodium, so it hasn't bothered me much. I did take a couple doses when I had the flu during the first month. The other meds they won't let you have are nausea medication or anti-spasmodics. There may be more, but that was all I was using before I started. They are wanting to know how well the drug helps with IBS-D symptoms overall, which is why they limit the other drug use. It hasn't been too bad though. This new med does help with pain so I really haven't missed the other drugs too much. I started on my 2nd supply of meds and I think I may have the higher dosage this time around because I have really been nauseous since I started taking it. I wish I could just tell them the first dosage was great, give me that and let me go on with my life, but I don't see that happening. I'm trying to tolerate this 2nd round as best I can, I'd hate to have to stop now and wait for the drug to come on the market. I'll keep you guys posted.


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## jmc09 (Oct 5, 2009)

Good luck and keep us informed.


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## Santa Monica Research (Jun 13, 2012)

I'm glad that you are doing well. We have 2 patients in this trial as well and both are showing positive results!!


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## jmc09 (Oct 5, 2009)

This drug sounds really promising. I will be entering the trial very soon here in the UK and will update here too and see if we can offer hope to others for the future.


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## njstomach3 (Aug 7, 2012)

I am currently in the screening process and have another week to go before im put on the drug. Its great to hear postive responses, I will be participating in the US. I was told by my trial center another drug was just finished in its phase 3 trial and is also for ibs-d and they had great results. She told me it was being fast tracked by the fda just like Mudelta. So this at least means help is on the way, my guess is by 2014 we should see multiple drugs for IBS-d, good luck to everyone participating. Once i receive meds i will give updates.


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## refuse to live this way (Apr 25, 2012)

I didn't realize there is a second drug out there in research. Maybe that will help keep the costs down once it hits the market. Does anyone know the name of the other drug? I'm still doing pretty good on the Muldelta, it has still been making me a bit nauseous, but I'm getting through it. Glad to hear there are others here in the research program. Best of luck to you guys. Let's try and keep everyone informed on how we are doing. If you don't mind, try to post under this same heading so we don't have to go hunting down multiples for information. I'm glad to hear others are doing well also. Looks promising everyone, hang in there help is on the way.


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## jmc09 (Oct 5, 2009)

I guess the other stage 3 drug is Asimadoline

http://ibs.about.com/od/medicationforibs/p/Asimadoline-For-IBS.htm


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## refuse to live this way (Apr 25, 2012)

I looked at the information for Asimadoline and I don't see where this new drug is supposed to help with the diarrhea end of IBS-D. It looks like it is specifically for pain, which will good for those who really suffer from the pain side of it. I get plenty of pain, but it is the diarrhea, and being stuck in a bathroom for who knows how long that I have the biggest disruption of my life with. I'm still having pretty good luck with the MuDelta without much in the way of side effects. It also works on the pain, but it has been a life saver for the diarrhea. I don't go back to the doctor for another 2 weeks. I'll continue to update you as things change or if I'm just feeling good overall. I really do think this drug is going to help a lot of you. I hope they can fast track it and have it available by year end or early next year at the latest. I do feel your pain and hope you all can be helped like I have.


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## jmc09 (Oct 5, 2009)

Really glad its helping you refuse,at least you know that you will have another 3 months of relief in the future.

I will be starting my 2 weeks drying out period very soon and your reports are giving me a lot of hope.


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## refuse to live this way (Apr 25, 2012)

The drug is still doing well for me. I have not had more then 2 bowel movements a day in the last month. The pain and gurgling/rumbling sounds have all but gone away. This drug is really looking promising. I hope those that are starting the research soon will have as much luck with it as I have. Even the nausea for the most part has subsided, still feel nauseous occassionally, but not everyday like I used to. I still have some gas, but it is not as bad, and doesn't seem to have a bad odor to it like it used to. It's almost like it just needs to come out once or twice a day and then it subsides. I really hope everyone who eventually tries this drug has the success I have. I'll keep you all posted as I go along. I go back to the GI doctor next Tuesday. I'll let you know how it goes. I really hope to see a lot less IBS-D patients having major problems once this drug is available. Wouldn't that be great!!!


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## njstomach3 (Aug 7, 2012)

I find out tomorrow if I'm accepted or not...they refused me a week ago because my "stool consistency" did not meet the requirement. So they gave me one more chance to be accepted, keeping my fingers crossed. Curious to know has anyone taking this pill been able to eat foods they haven't had in some time?


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## Mo26 (Jun 26, 2012)

Hi can someone please tell me how to join the clinical trails in the UK or how you managed to do it? Much appreciated


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## jmc09 (Oct 5, 2009)

Mo26 said:


> Hi can someone please tell me how to join the clinical trails in the UK or how you managed to do it? Much appreciated


I am doing mine through Wythenshawe Hospital,Manchester and Prof Peter Whorwell's team.

If you want to participate I can give you some contact details in a Personal Message.

I went for my pre screening appointment today and go back on 19th Feb and start my 2 weeks wash out period from then on.


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## njstomach3 (Aug 7, 2012)

Started on mu delta 2 days ago. So far it's seemed to surpress my appetite a but and I seem to have much more gas along w trouble sleeping. Other then that I haven't had any episodes yet, has anyone else taking this drug experienced these symptoms ?


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## jmc09 (Oct 5, 2009)

njstomach3 said:


> Started on mu delta 2 days ago. So far it's seemed to surpress my appetite a but and I seem to have much more gas along w trouble sleeping. Other then that I haven't had any episodes yet, has anyone else taking this drug experienced these symptoms ?


This sort of thing happens to me with anti spasmodics.

Remember that you could have the placebos instead of the drug.


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## refuse to live this way (Apr 25, 2012)

I went back to the GI doctor yesterday. I had a bad bout of nausea and diarrhea on Monday and felt nauseous all day yesterday, but it seems to have let up this morning. I have started on my 3rd round of medication. I've only taken it for one day so far, so I'm not sure what, if any, different effects it might have on me. I was pretty nauseous through much of the last batch I took. Still wondering if the medication might have caused this (maybe I had the higher dosage) or if this is just another part of my IBS symptoms. I'll let you know how I'm doing on this 3rd batch next week.


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## njstomach3 (Aug 7, 2012)

Today is the end of my first full week and so far not one stomach ache.... I'm curious to know from the poster above me if you've experienced nausea and vomiting as a symptom of ibs prior to starting this medication? Also I see your from Springfield is it the Springfield in nj?


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## jmc09 (Oct 5, 2009)

How long are the periods you spend on each drug, is it 12 weeks or less?


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## refuse to live this way (Apr 25, 2012)

njstomach3 said:


> Today is the end of my first full week and so far not one stomach ache.... I'm curious to know from the poster above me if you've experienced nausea and vomiting as a symptom of ibs prior to starting this medication? Also I see your from Springfield is it the Springfield in nj?


Hi NJ: I'm from Springfield, Illinois and to answer your question, yes I did have nausea and vomiting as a symptom of IBS before starting the drug. It may be an IBS flare up that is causing the nausea now, not the research drug, I just don't know. Although, I do think I may have the placebo this time around since I'm not getting nausea when taking the drug. I have also had several flare-ups of previous IBS symptoms with diarrhea and pain. My daily diary posts will indicate this so if it's a placebo matter this time, they'll know I'm not lying and the drug does seem to be working. If I don't have the placebo, then the drug is not working as well as when I first started.

How have the rest of your symptoms been since starting the drug? Has it helped you? Do you feel better overall? I hope this is the case and you are feeling some relief. I really am hopeful this drug will be available soon and help many of the sufferers on this site. I've come to feel for you all and hope reilef is in your futures.


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## njstomach3 (Aug 7, 2012)

refuse to live this way said:


> Hi NJ: I'm from Springfield, Illinois and to answer your question, yes I did have nausea and vomiting as a symptom of IBS before starting the drug. It may be an IBS flare up that is causing the nausea now, not the research drug, I just don't know. Although, I do think I may have the placebo this time around since I'm not getting nausea when taking the drug. I have also had several flare-ups of previous IBS symptoms with diarrhea and pain. My daily diary posts will indicate this so if it's a placebo matter this time, they'll know I'm not lying and the drug does seem to be working. If I don't have the placebo, then the drug is not working as well as when I first started.
> 
> How have the rest of your symptoms been since starting the drug? Has it helped you? Do you feel better overall? I hope this is the case and you are feeling some relief. I really am hopeful this drug will be available soon and help many of the sufferers on this site. I've come to feel for you all and hope reilef is in your futures.


So far I have not had a huge flare since I've started the drug, right now I am currently on my 4th week. I can't remember the last time I've gone this long without serious pain. I still get touches of ibs but nothing compared to the past. I'm worried when I do get to the placebo stage I imagine it will be a rough week. I hope your symptoms calm down and best of luck to you.


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## jmc09 (Oct 5, 2009)

I'm due to start my first dose of the drug on Tuesday and I'm looking forward to trying this drug a lot.


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## kadoatie (Mar 4, 2013)

Hi everyone! I'm new here, this is my first post. I was doing some research on this study {mudelta} and found this  Anyways I have been accepted into the study and have been taking the medication for several days now. I've had IBS-D for about 7 years and normally go to the bathroom about 6-7 times a day at least, sometimes more, and the stools are usually pretty loose. But the past few days I've been on the medication, I've only gone about 2-3 times a day and it's MUCH more solid and formed. So basically, this drug has been SO helpful! It makes me thrilled to know that hopefully there will be a medication I can take to help with my IBS-D symptoms. I know that the Dr. in charge of the study told me that after the study is over he would be able to have me continue if I wanted. I haven't had any nausea/vomiting or other side affects so far. Other medications I am on are Prozac, Neurontin, Allegra, Dymista and Xanax {on occasion} and those were all fine to take with this.

I would encourage anyone to sign up for this study if you have IBS-D! It has been a huge blessing to me so far. So many years I've spent tethered to the toilet basically and to think that someday, that could be over. I can only hope!!


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## jmc09 (Oct 5, 2009)

Just received my first batch of the drug today so will report back with how its going over the coming weeks.
Interesting that some posters may be able to continue with the drug if it helps.
Are those people in the uk?


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## njstomach3 (Aug 7, 2012)

It is interesting that your doctor told you that you could continue when it's over. My doctor told me I would not be able to relieve it once the study is done until its released to the public.


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## jmc09 (Oct 5, 2009)

My schedule seems to indicate that the dosages are 6 weeks on the first then 10 weeks on the second batch and 12 weeks on the third. I deduced this from my centre schedule of visits.
Are they allowed to mix drugs in each batch or must they keep the same type in each batch?


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## urbanfresh (Aug 31, 2009)

I am SO excited about MuDelta, I really hope it is licensed and then released in UK!!! It is about time that research finds a new drug for IBS-D sufferers, it has been long enough of the same old Mebeverine or Buscopan!


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## jmc09 (Oct 5, 2009)

Had a few problems with my first couple of doses.Woke up in the early hours with dizziness,stomach gurgling and nausea and have had a rough 24 hours.Done nothing positively for my ibs at present.
Hope this is the placebo


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## njstomach3 (Aug 7, 2012)

I was informed at my visit today you either receive 75mg dosage ,100mg, or placebo. Whatever you are given from the first batch stays constant throughout the study.


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## jmc09 (Oct 5, 2009)

njstomach3 said:


> I was informed at my visit today you either receive 75mg dosage ,100mg, or placebo. Whatever you are given from the first batch stays constant throughout the study.


Surely you experience a placebo and a dose of each throughout the study or how will they know which one works or doesnt?

There has to be comparisons with each person I would have thought.

Mine have been supplied in a box of 32 tablets and are replenished on each visit.


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## njstomach3 (Aug 7, 2012)

jmc09 said:


> Surely you experience a placebo and a dose of each throughout the study or how will they know which one works or doesnt?
> There has to be comparisons with each person I would have thought.
> Mine have been supplied in a box of 32 tablets and are replenished on each visit.


I asked that exact question to the rep at the clinic I go to and she was very clear that what I was given from day 1 will remain the same throughout the study. Please ask your doctor if that's not true


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## jmc09 (Oct 5, 2009)

njstomach3 said:


> I asked that exact question to the rep at the clinic I go to and she was very clear that what I was given from day 1 will remain the same throughout the study. Please ask your doctor if that's not true


You may be correct.Here is the passage on the document I have been given.

*Study Treatment
If you qualify to receive study drug, you will be assigned by chance (like the flip of a coin) to 1 of
the 3 study groups shown below:
 Group 1: JNJ-27018966, 75 mg twice a day (150 mg total daily dose)
 Group 2: JNJ-27018966, 100 mg twice a day (200 mg total daily dose)
 Group 3: placebo twice a day (placebo is a pill that looks like JNJ-27018966 but has no
active ingredient)
You have an equal chance of being in any of the study groups. Neither you nor the study doctor
will be able to pick which study group you are in. Your random assignment to a treatment group
will be automatically chosen by the IVRS
Neither you nor the study doctor will know which study group you are assigned to. However,
the study doctor can find out if there is an emergency or if it is necessary to know for your
health. Once you are assigned to a particular study group, it is not possible to switch you to
another group.
Every patient at some point in the study will receive placebo medication, even if you are
assigned to the 75 mg twice daily group or 100 mg twice daily study group. You will not know at
which time point the placebo is administered.
 The study doctor will give you a supply of study drug and tell you how to take it. You should
take study drug, two tablets twice a day, in the morning and in the evening, with food.*

You may be correct but everybody receives the placebo at some stage so I may have been given a placebo first.

I'm also a bit worried that magnesium may have been used as a filler and this causes me some problems.


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## JuliannaCol (Jan 1, 2013)

BQ said:


> Here is the info page from the Pharm:
> 
> http://www.furiex.com/pipeline/discoverydevelopment-pipeline/mu-delta/
> 
> Here's hoping it helps many!


I was reading through all the docs available and found that this particular drug (loperamide) is used mainly for diarrhea, but not exclusively for IB Syndrome. Well, It is so good hearing that it is actually working for you, but does it help with major cramping and pain? Can you tell us if u have felt any imrpovement in that area?


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## jmc09 (Oct 5, 2009)

JuliannaCol said:


> I was reading through all the docs available and found that this particular drug (loperamide) is used mainly for diarrhea, but not exclusively for IB Syndrome. Well, It is so good hearing that it is actually working for you, but does it help with major cramping and pain? Can you tell us if u have felt any imrpovement in that area?


Julianna, this drug is NOT loperamide, it is an experimental drug in stage 3 of the research phase and some of us are volunteers involved in that trial phase.

Loperamide is an over the counter drug that is currently the only real drug used to treat ibs with diarrhoea and gives general relief from diarrhoea but not much else.


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## Sapphmonster (Mar 7, 2013)

Good luck to all you guys in the trials, I hope you get some good results and this drug eventually reaches the market! Any idea if trials are being held in Australia?


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## njstomach3 (Aug 7, 2012)

been on Mu Delta for a little less than 2 months and so far I haven't had any serious flare ups except for yesterday. Had pure liquid Da along with semi server cramps, I called my study center to inquire if after all this time I've been good why it would hit me like this. And it was mid week so its not like im on a new batch of meds. My study provider thought it was weird, saying that mostly everyone who has the drug and isn't on placebo hasn't had any flare ups. Do any of you guys experience relief and a flare every so often with this drug??? any feedback is much appreciated.


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## refuse to live this way (Apr 25, 2012)

I have had a couple of flare-ups since I started on the drug. I have now been on it a little over 3 months. When I had the flare-ups I called in to my research director and let her know. They thought that it was possible I had just caught a virus or something (I'm not so sure about that). I've recently changed my diet (my chiropractor recommended it) and am eating mostly just meat, vegetables and fruit. No dairy, no wheat or grains, and very little sugar. It seems to be helping some as well. I'm still doing pretty good on the drug for the most part. I usually only have 1 or 2 bowel movements a day and they are mostly formed. My paid in my stomach has diminished for the most part and all of the churning and gurgling has subsided for the most part as well. I do think this drug is at least going to help most people. Keep in mind, it is not a cure by any means, it just helps with the symptoms of pain and diarrhea. I think that is why flare-ups will continue to happen on occassion regardless of the medication. But, as we all know, any help in this area is better then none since there really isn't anything else out there. Here's hoping it's available to all by year end.


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## njstomach3 (Aug 7, 2012)

Thanks for your input, I think I need to watch my diet a little more. Since starting the drug I've got carried away a couple times w bad foods thinking I was safe cause of the meds. Hopefully the flare up passes, but its good to know I'm not alone.



refuse to live this way said:


> I have had a couple of flare-ups since I started on the drug. I have now been on it a little over 3 months. When I had the flare-ups I called in to my research director and let her know. They thought that it was possible I had just caught a virus or something (I'm not so sure about that). I've recently changed my diet (my chiropractor recommended it) and am eating mostly just meat, vegetables and fruit. No dairy, no wheat or grains, and very little sugar. It seems to be helping some as well. I'm still doing pretty good on the drug for the most part. I usually only have 1 or 2 bowel movements a day and they are mostly formed. My paid in my stomach has diminished for the most part and all of the churning and gurgling has subsided for the most part as well. I do think this drug is at least going to help most people. Keep in mind, it is not a cure by any means, it just helps with the symptoms of pain and diarrhea. I think that is why flare-ups will continue to happen on occassion regardless of the medication. But, as we all know, any help in this area is better then none since there really isn't anything else out there. Here's hoping it's available to all by year end.


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## jmc09 (Oct 5, 2009)

Had to quit the trial as I was getting dizziness and increased abdominal discomfort. It wasnt doing anything positive for me anyway.

I either had the placebo or something in the drug was reacting with me.

Ive always insisted that I believe I have a very mild form of colitis which would mean there is a strong likelihood of problems but my colonoscopies keep coming up negative for inflammation.


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## refuse to live this way (Apr 25, 2012)

I'm heading to the mayo clinic on April 23. Wish me luck and I'll report back and let you all know what, if anything, they find. I figure it's worth a shot, but if they don't end up finding anything I'll probably give up on doctors all together. Wishing you all the best.


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## njstomach3 (Aug 7, 2012)

just wanted to see if anyone had any recent updates with this medicine. I for one went the first month and a half with no issues, out of no where my old symptoms came back. Not at the full effect they use to hit me with but still making life a little less enjoyable. Hope its working well for everyone else.


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## njstomach3 (Aug 7, 2012)

the drug has finally been given a name. "Eluxadoline". I am not sure if that means its any closer to being released to the public but i hope so. In talking with my study center they informed me Furiex who makes the drug has opened another study on it. From my knowledge i thought phase 3 which is a 6 month program which is what i am in was the final testing stage. However this newer study lasts a year and is currently open for applicants. If anyone out there is out of options and looking for an answer i would look into joining the study. I have absolutely seen results thus far, although i have flare ups my cramps aren't as severe as they use to be.


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## squeeshy3k (Jun 5, 2013)

what does the medicine do? how does it work?


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## njstomach3 (Aug 7, 2012)

squeeshy3k said:


> what does the medicine do? how does it work?


it's an opioid receptor blocker.. in your stomach you have receptors that send signals from the stomach to the brain and in this case the drug blocks these receptors which in turn decreases the pain and limits diarrhea .


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## lookingforcure (Mar 27, 2012)

I'm quite interested in this med, it says it increases mu opioid, which is the same mechanism as Imodium and Lomotil. That would explain the anti-diarrheal effect. The new addition seems to be the second part, the delta opioid blocker. I'm not sure what exact role that plays...perhaps blocking the delta opioid receptors somehow decreases pain? Otherwise I'm not sure what benefit this medication can provide above and beyond what Imodium and Lomotil already do in much lower doses...my guess is that the "Delta" side of the equation somehow decreases pain and keeps people from getting overly constipated, a complaint some users of Imodium have. Personally, daily Imodium works pretty well for me (i.e. keeps me functional and relatively normal most of the time), but I'm interested in something that can perhaps do a bit more for pain/discomfort. Also, I've noticed the amount of Imodium I have to use has slowly but surely risen over time, so it would be good to be able to switch over to something else.

Refuse to live this way and njstomach, did either of you previously have success with Imodium/Lomotil?


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## njstomach3 (Aug 7, 2012)

I have used both lomitil and imodium. Lomitil didnt seem to help me much, just made me tired. Imodium i still use in case of emergencies, even with this drug i still get loose stools from time to time. Imodium helps but its an as-needed drug, the experimental is a prevenitive drug, helps so much with the cramps and pain. I have about another month and half with this drug and my trial is over.



lookingforcure said:


> I'm quite interested in this med, it says it increases mu opioid, which is the same mechanism as Imodium and Lomotil. That would explain the anti-diarrheal effect. The new addition seems to be the second part, the delta opioid blocker. I'm not sure what exact role that plays...perhaps blocking the delta opioid receptors somehow decreases pain? Otherwise I'm not sure what benefit this medication can provide above and beyond what Imodium and Lomotil already do in much lower doses...my guess is that the "Delta" side of the equation somehow decreases pain and keeps people from getting overly constipated, a complaint some users of Imodium have. Personally, daily Imodium works pretty well for me (i.e. keeps me functional and relatively normal most of the time), but I'm interested in something that can perhaps do a bit more for pain/discomfort. Also, I've noticed the amount of Imodium I have to use has slowly but surely risen over time, so it would be good to be able to switch over to something else.
> 
> Refuse to live this way and njstomach, did either of you previously have success with Imodium/Lomotil?


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## lookingforcure (Mar 27, 2012)

njstomach3 said:


> I have used both lomitil and imodium. Lomitil didnt seem to help me much, just made me tired. Imodium i still use in case of emergencies, even with this drug i still get loose stools from time to time. Imodium helps but its an as-needed drug, the experimental is a prevenitive drug, helps so much with the cramps and pain. I have about another month and half with this drug and my trial is over.


glad to hear it is still working for you! How is the diarrhea going? I read that this drug should be out in the second half of 2014.


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## njstomach3 (Aug 7, 2012)

lookingforcure said:


> glad to hear it is still working for you! How is the diarrhea going? I read that this drug should be out in the second half of 2014.


I have had 1 complete liquid bout in the past 5 1/2 months. other then that sometimes i get loose stools. Overall its going well. Where did you read about the drug coming out second half of 2014? i would be interested to read that article, thanks.


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## lookingforcure (Mar 27, 2012)

Alas, I can't seem to find the article now. It was a transcript of a conference held by the drug company (Furiex) with their investors, in which they identified MuDelta/Eluxadoline as their number one priority, and they said they were committed to releasing it in 2014. Sounded like they were really set on getting out there as quickly as possible, which is good.


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## refuse to live this way (Apr 25, 2012)

I have stopped taking the research drug. Although it was helping with the bowel movements and stomach pain, I was still having flares every week with nausea and vomiting, along with loose stools. I went back on my old meds of Reglan for nausea and hyoscomine an anti spasmodic. I was not allowed to take these with the drug. I really haven't noticed much difference in bowel movements since I went off the drug. I'm still having 1-2 a day, semi formed. I've been off now for 2 weeks so I would think it is out of my system by now. The research people still want me to do the daily diary and come back for my next visit which is next week. They said if I wanted to I could go back on it, but I would have to stop taking my other meds, which actually help more then the research drug. It may be that I have something else (which is what I keep trying to tell these doctors) and that is why it is not doing much for my symptoms. I find it real hard to believe that I'm catching a virus every week when my symptoms come back with a vengeance, but that is what the research people kept trying to say I had every time I told them what was going on with me. If I could only find a doctor who will actually do some research and take an active interest, I might be able to lick this thing, but so far they hear IBS and say I can't help you. Anyone have any other suggestions? I really don't want to lose my job because of a flare up every week. I'm getting desperate.


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## lookingforcure (Mar 27, 2012)

I believe Zofran (Ondansetron) is excellent for nausea, if that is your main compaint...


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## njstomach3 (Aug 7, 2012)

refuse to live this way---- what test have you undergone to see the cause of your symptoms..

colonoscopy, endoscopy, barium test, blood work, food allergy test? There are steps to take to rule out IBS or if you have something else that can be treated with meds. I felt nasuea witht his drug in the beginning but it wasnt anything i couldnt handle.. Its possible you got the placebo.


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## Andres Ortega (Jul 11, 2013)

anyone can tell me how to acquire "Eluxadoline" I have IBS-D ten years and the drug "imodium" eventually not work very well! thanks


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## lookingforcure (Mar 27, 2012)

Also, refuse to live this way, didn't you say you were doing great until you moved into a different stage in the trial? At which point you either got a higher dose or possibly placebo? I wouldn't give up on this drug just yet if you were showing results with the first dose they gave you. Keep in mind you would be able to take your anti-nausea and other meds if you weren't in a trial.

Andres, the drug is currently being trialled, so it is not available to the general public yet. In the meantime, you could try Lomotil for your problems, it is similar to Imodium but requires a doctor's prescription.


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## TheStand (Jul 12, 2013)

I finished the trial in Mar of this year. I had great success with the med. The nightly call was a pain but the relief made it worth while. They told me about the next trial and I told them I would be happy to do it.


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## lookingforcure (Mar 27, 2012)

Hey Thestand, I'm glad to hear that! I'm curious about how exactly this drug differs from Imodium. Have you tried Imodium before, and if so, what difference did you notice between the two?


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## TheStand (Jul 12, 2013)

lookingforcure said:


> Hey Thestand, I'm glad to hear that! I'm curious about how exactly this drug differs from Imodium. Have you tried Imodium before, and if so, what difference did you notice between the two?


I have tried Imodium and others. I have both the Diarrhea and cramps with bloating so the Imodium or any of the anti-diarrheals caused really bad cramps and pains. It would stop the diarrhea for a while but then there would be basically an explosion.

This new medication really relieved all of the symptoms and I had no side effects at all from it. I did experience some really wild and vivid dreams for about a week after I started it. Due to a heart procedure about week 25 I had to discontinue the med for 2 weeks and in week 2 the IBS started back in. About 4 days after starting the med again it went away. I had to take 2 pills in the morning and 2 more at night (12 hours apart) and unlike Imodium (which you basically take when you need it) I almost forgot I had IBS. For almost the entire trial I had basically no symptoms of my IBS. I have lived with this for about 45+ years and it was great to forget about it for a while.


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## lookingforcure (Mar 27, 2012)

Wow that is awesome, can't wait for this med to be out next year!

The only issue I can think of is since it is opioid-based, there might be an issue with tolerance after long term use? Or maybe they've somehow managed to address that (I hope).


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## TheStand (Jul 12, 2013)

lookingforcure said:


> Wow that is awesome, can't wait for this med to be out next year!
> 
> The only issue I can think of is since it is opioid-based, there might be an issue with tolerance after long term use? Or maybe they've somehow managed to address that (I hope).


That would be a valid concern. Since it's still in trials, there can't be any long term data. I think that even with that question I will still go for it though. I know first hand how much of a difference it made. I just started (a week ago) another flare up and am thinking about calling the Dr to start another 10 day steroid pack. I used to take Levsin, it never did work very well but did lessen the effects some. Now that doesn't seem to work any longer. I am also going to call the research lab Monday to see if the next phase testing has started and if I can take part.


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## lookingforcure (Mar 27, 2012)

According to the links below, it seems like they thought of that concern. They claim the delta antagonist helps prevent tolerance from developing, which if true is great news!

http://files.shareholder.com/downloads/ABEA-4H9PM3/0x0x642051/0a4fa124-ef94-4ca0-a56d-965d0be0d13c/View%20presentation

http://seekingalpha.com/article/1255801-furiex-pharmaceuticals-management-discusses-q4-2012-results-earnings-call-transcript?part=single


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## TheStand (Jul 12, 2013)

Thanks for the links... But it looks like I'll have to wait. They said today that Furiex isn't allowing anyone to roll over from phase 2 to phase 3 trials.


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## njstomach3 (Aug 7, 2012)

I will be coming off of my meds the first week in september after a 6 month successfull trial. Anyone here have any experience on coming off of this medication and if so what should I be preparing to deal with. thanks


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## HNat (Apr 7, 2012)

I am SOOO happy that finally something seems to be working!! Pray that the drug is a cure to IBS  I want to take part in this study but I looked up online and it looks like they are not enrolling new candidates any more .

Does any body know when will they start enrolling candidates again (for phase 3 I presume)? If you hear that they are looking for candidates please do let us know...


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## njstomach3 (Aug 7, 2012)

You just missed the cutoff, From what i read they reached their target for candidates in July to close out phase3. There were two parts to phase three, one which i took part in (period of 6 months) the second was a period of 1 year. Unfortunately for you phase 3 is underway. However that means we should see this drug the second qtr of 2014. Hang in there, help is on the way!



HNat said:


> I am SOOO happy that finally something seems to be working!! Pray that the drug is a cure to IBS
> 
> 
> 
> ...


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## lookingforcure (Mar 27, 2012)

njstomach3 said:


> I will be coming off of my meds the first week in september after a 6 month successfull trial. Anyone here have any experience on coming off of this medication and if so what should I be preparing to deal with. thanks


Nice! So in summary, it worked well for you in the end? I just read another post (see below) relaying that a Furiex rep said Eluxadoline won't be released until the end of 2015, which really doesn't sound right to me, but nevertheless has me worried. Do you have any info/have you talked to anyone who has said it is beining released in 2014?

http://www.ibsgroup.org/forums/topic/165276-hit-hard-today/


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## njstomach3 (Aug 7, 2012)

It def has worked out well for me. Overall my lifestyle has changed for the better. I actually had an email exchange with the SVP of clincial studies for Furiex last week. When i inquired to its release date he answered me back with "As you may understand, we are in the late stages of the clinical trials that are necessary for our submission to the FDA. We have stated publicly that we anticipate releasing some aspect of our data once we become unblinded sometime in early 2014 and then, if the drug is safe and shows superiority as compared to the non-active placebo, we plan to submit our application to the FDA sometime in mid-2014. If all goes well and the FDA approves the product (which could take a year or longer), it could be on the market by late 2015. As you can imagine, there are no guarantees about if or when we might be approved to commence with selling the product; we simply have to wait and see our results and if the FDA agrees with our assessment. "

Clearly the end of 2015 looks to be the soonest this will come out.



lookingforcure said:


> Nice! So in summary, it worked well for you in the end? I just read another post (see below) relaying that a Furiex rep said Eluxadoline won't be released until the end of 2015, which really doesn't sound right to me, but nevertheless has me worried. Do you have any info/have you talked to anyone who has said it is beining released in 2014?
> 
> http://www.ibsgroup.org/forums/topic/165276-hit-hard-today/


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## lookingforcure (Mar 27, 2012)

Wow, that is really depressing. Everything I'd read up to this point had it being released in 2014. So I guess we'll have to wait another year. Which I really don't get, isn't the point of fast track that they get approved much faster? Wonder why they moved the date back a year?


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## njstomach3 (Aug 7, 2012)

fda takes forever with approving drugs. 2015 is by far the closest date we have to a release of an ibs-d drug. sorry for the disappointing news. good luck and feel better


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