Naltrexone
#164361 - 03/26/05 09:00 PM
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I wonder if anyone on this forum has tried low-dose Naltrexone for IBS. It is currently in Phase 3 clinical trials for IBS. I talked to a GI center in Milwaukee, WI a few days ago and was informed that the results of the testing has been promising so far. Also, a GI dr. at Mayo clinic will review my daughter's records next week to see if she is a candidate for treatment with this medication. So it seems that some doctors are using it off-label for IBS treatment.
Information on Naltrexone can be found on Heather's website, and I am hoping that someone has tried the medication and can give us a report.
Thanks!
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musicprof
#164407 - 03/27/05 08:10 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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I'm curious...how old is your daughter? Do remember that there is no miracle drug for IBS....even the ones that help are rarely enough to control it on their own! Long-term diet, supplement and lifestyle changes are far more helpful usually.
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I tried asking my doctor for this drug as I am located too far from any of the study sites and am unable to make the check in visits.
My doctor refused to prescribe this for me because it is not yet approved for IBS. I guess I will need to wait until it is finally approved which, unfortunately, takes years even after the study is done I think.
I am glad to hear that the study is showing positive results. Do you know what the dosage is for treating IBS? All I know is that it is much much lower than it is for the drug detox.
Do you have any idea when it might be on the market for IBS?
I read an article about this drug and that is when I started researching possible study sites. I was really disappointed that I was not able to participate.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I don't know the dose used for IBS, but I would imagine that it is in the 3-4.5mg range. My daughter's doctor at Mayo confirmed that 76% of IBS patients responded favorably to the drug in the initial trial. I don't know when it will be approved, but the Phase 3 trials have been going on since sometime last year. Perhaps it will be fast-tracked by the FDA since there are no good medications for IBS treatment presently on the market. I will ask this question of the specialist at Mayo when we talk to her this week or next.
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My daughter is 18 and has severe syptoms if IBS-C. She has been in constant pain for 4 and 1/2 years, is very careful with her diet, and does everything recommended for IBS in regard to soluable/insoluable fiber supplementation, exercise, etc. These things do help with the constipation, but absolutely nothing has reduced her pain. She is one of the most unlucky ones in regard to IBS pain, so we hoping that this new medication will help with the symptom of pain.
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Do you know which symptoms this drug is suppose to help ease? Pain? Cramps? C or D?
Thanks! Keep us updated. I'll keep my fingers crossed that they don't keep this drug from the public for too long. I hope I do eventually get on it, I will not be one of the 24% that it didn't work for at all. But I do seem to not have very good luck with any IBS treatment or drug thus far. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Exact same history and symptoms. Frustrating to be doing what everyone else has done to find relief, yet me and your daughter remain in tremendous pain no matter what. I totally know how she is feeling. It is a horrible way to try and live. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Beth,
I am the daughter of Steve Jordheim, whose username is musicprof. Thank you so much for your post - I'm so glad to find someone who understands my situation of constant pain. It's so hard to maintain a high quality of life, especially in college when it seems everyone is "normal" in their eating and can do whatever they want without getting sick, when you're in constant pain. No matter what I try to do, the pain is always there. Exercising helps (I do pilates and stretching videotapes) as does throwing my mind into my studies to get my mind off of the pain. I'm a voice performance major, so singing is my source of therapy (although at times my pain hinders my ability to sing since it's such a physical activity). All foods bother me at some point - if not today, then tomorrow. It's so frustrating! I've lost weight due to my inability to eat enough because of the pain, and I'm trying desperately to gain it back. I'm hopeful about Naltrexone, but it's being studied so I can't get the drug yet. In the meantime, my heart goes out to you, and we can support each other!
-Alisa
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According to the information I have read - from both the manufacturer and press reports, it is supposed to be effective for IBS pain and normalizing bowel function. I read today on the University of North Carolina's GI website that the Phase 3 trials began in January 2004 and are scheduled to end in July of this year. Perhaps this means that the application for approval will be reviewed this summer or fall. I plan to make calls about this tomorrow to both Mayo and UNC.
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I am sorry you are also living your life with this hiddious pain! Yes, I totally understand as I am living with the same symptoms as you.
You have a deal. I definately could use support from someone who totally understands what my life is like! I am always here for you as well.  Please feel free to email me at any time! My email address is deerbeth@yahoo.com. I will do anything I can to help when the pain gets you down.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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It does sound promising since most of the newer drugs (zelnorm and lotronex) do not focus on the pain, per se.
The fall seems so far away to wait, and I think that is even a conservative estimate. I think it will be longer. But what can we do?
Thank you again, and please keep us updated on what you find out. I was so disappointed not to be able to get involved in the trials.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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We are going to see what Dr. Foxx-Orenstien at Mayo Clinic has to say about the medication. In writing to my daughter, Dr. F-O's assistant said that the doctor would be reviewing my daughter's chart to see if she is a candidate for treatment with the medication. While we don't know for sure, this gives us the impression that she is using the drug off-label for IBS treatment. I will definitely send the information after we hear back from Mayo.
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Has she actually seen someone yet, or do you have an appointment scheduled for the future? How did you get in to see them? I bet the waiting list is long!
It would be quit a drive for me, and expensive, but very tempting to try and get in there if I could. But I don't think they would just take anyone who called on there own. I currently do not have a doctor for a referal.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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My daughter has been to the Mayo Clinic in Rochester two times. The first was nearly four years ago, months after her symptoms began. She was diagnosed with IBS at that time. Her gynecologist in our city also suspected endometriosis, and surgery was performed which did reveal stage-one endometriosis. As you know, endo patients often have bowel symptoms, and it can be difficult to sort these symptoms out. At present, we think that IBS is the primary issue, and are hoping to find some way to help with the pain. The bowel function does respond somewhat to diet, thankfully, but nothing helps with the relentless pain.
I wonder if anyone on this board has been treated at a chronic pain clinic. If so, can you give us a report on any help it may have provided?
Thanks.
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I forgot to mention how she got an appointment at Mayo Clinic. For the appointment four years ago, a friend of mine recommended a pediatric gastroenterologist at Mayo who agreed to see my daughter, and my daughter's PCP made the referral. The second time, arrangements were made through a friend who is a physician at Mayo.
The assistance of my friend made the appointment process much easier; otherwise, there probably would have been a wait of weeks or months to get in.
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All the time! Nothing seems to ease it and it dominates my life 24/7. It's such a hard thing to deal with. I really hope they find something that helps us out soon. It's very frustrating that everyone seems to get better on this diet. I got worse  Welcome, I'd love to see you around more often.
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Amy
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Welcome!
#164578 - 03/28/05 02:54 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Nice to see your face (and what a pretty face it is!  ).
You've probably tried all this, but...
Have you tried peppermint caps? Heather swears by them for her pain.
And a-d's? Tried them? Just a thought.
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Just curious as to what Heather thinks about his drug? I'm very interested in trying it but I'm also going through fertility issues right now so I'm not sure its a good time to try something new. I'm going to ask my RE (reproductive endochronologist) about it on Thursday and if she says its ok to try, I'm going to try and get a script for it. Has no one on the boards tried it yet??? I know its not technically approved for IBs yet but if there is a chance it will help why not try it? I've been on Vicodin for the pain so my dr could also say she is prescribing it to me for a Vicodin addiction to get around the FDA until it is approved.
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Taking it one day at a time.....
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Hi! I'm sorry I haven't been able to respond sooner to your post. I am so very sorry that you did not improve with the IBS diet. My pain and discomfort dominates my life, and it's so annoying. I've found the diet to help, but the acacia fiber gave me more bloating, gas, and pain. I stopped taking it and am relying on flaxseed to stay somewhat regular. I'm actually having some D today, which is WONDERFUL for me!!! Today is a good day because of that. I hope you are having a better day today as well!
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Thank you for your support, Beth. It's a comfort to know you're another person who understands the pain of IBS! I am feeling better today since I'm actually having D! I think it's because of the flaxseed I've been having. It's a great change! Anyway, I hope you're having a better day as well. Better days are so precious...
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