I wanted to say thank you!!!!!!! to everyone who created this forum, the Lotronex Action Group, the petition, etc. I pray for all of you. I have totally faced the reality of the situation that Lotronex will probably not come back. Only a miracle could make this happen.I work at a college doing class reserves(electronic, hard copy, books, articles) that professors want placed on reserve in the library. My IBS is already beginning to get itself ready for "a nightmare" the whole semester and school begins on August 28.I will probably start to begin taking the Immodium AD the first thing in the morning and two Chewable Caltrates(600mg. I just need to get through the day to perform my duties.I have gotten in the routine of going home and living in my bedroom. I am a new person so I watch alot of FOX, MSNBC, Court TV. It's totally depressing being married and having to live like this. I have finally gotten my husband to start doing things without me. I just can not stand the guilt that I feel because I can't have a normal life as a partner and for myself.I am so sorry for being such a depressed person in front of all of you.Good luck to all of you!! I wish all of you the best in your health, family, careers etc.Dina
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Dina,I know how you feel. Have you tried taking other medicines to help you with your IBS? I take Remeron which blocks the SAME 5ht3 receptor as Lotronex. It has worked wonders for me & others with IBS D. Others use Zofran. Levbid works pretty well also. It depends on the person. Ask your doctor if you can have something to help you. You shouldn't have to be confined to your home. Since taking Remeron I have not had a D attack.
Dina,Don't give up now. The good news is that the word NO has not come back to us yet from the FDA or GSK. Until that happens, things are still progressing, as frustrating as that may be for all of us. In the meantime, do go to your doctor and try something else that may work better for you. I think if you try the Zofran or even the Remeron for some, that you will have more success than what you are on now. That's just my opinion, of course, but I'm just basing this on what others have been reporting. I know exactly how you feel with the guilt and all. I have a husband and an eight-year old. It's a horrible feeling not to be able to enjoy life, especially with your family.Please do try the Zofran at least. It's very similar to Lotronex and has been working very well for those that have been reporting on it.Maria
It is not necessary to be a prisoner in your home just because you have IBS-D, as I do. Get a prescription for Tylenol with Codeine #4 (or generic) from your doctor. Take half of one an hour or an hour and 15 minutes before you have to go out. Codeine is constipating; it will stop the D for a few hours. Don't agonize over whether this is a drug you want to take; it's more important to have a life. This is what allows me to leave the house. I've been using it for this for over 20 years, and I've never built up a tolerance to it, and I've never had to increase the dose. You have to have a life. Try it.Mark
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Good idea Mark but most doctors won't/can't write scrips willy-nilly when it comes to narcotic containing drugs. Lomotil will work just as well for some people and if DeDe has been diagnosed with IBS her doc should be happy to prescribe that! It also contains a derivative of opium. And the pills are smaller, too.
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)http://petitiononline.com/LOTRONEX/petition.html(1,443 signatures now, have you, your friends and relatives signed?)http://www.allexperts.com/displayExpert.asp?Expert=36364 (allExperts expert)
People have to experiment to see what works best for them. For me, Lomotil was like Tic-Tacs. Nothing.Except for Lotronex, all drugs for this condition are downers. Remember Paragoric, which they used to give to children? It was tincture of opium. Worse than codeine, actually. Codeine is a recognized remedy for symptoms of D. It is absolutely medically justifiable--it is medicine. As "narcotics" go, it's pretty mild as long as you don't take too much (and in over 20 years the worst effect I've ever had from taking too much is getting a little sleepy). Every gastroenterologist I ever consulted was well-aware of it and didn't hesitate to prescribe it.This is a nasty, life-ruining condition. Use whatever is available to have as normal a life as possible. You don't have to be a prisoner in your own home.Mark
Dina,We all know how you feel but please don't give up hope until we get the final word on Lotronex from the FDA.As for Imodium, have your doctor write a prescription for the chemical name..Loperamide, 2mg....it's lots cheaper than buying it over the counter and insurance will cover it. That's what I did and I take from 2-4 per day, depending on where I'm going and what I'm doing. (t w/ codeine would work if you're not allergic to codeine like I am) Anna
Anna, how long have you been taking that much Imodium? I take it spareingly when I think I'm going to need it but I'm so afraid my system will get used to it and then it won't work. I never take it when I'm at home and if I have D due to illness, I never take it then either. I just take it when I'm going to be out. I would love to live on it!!Nanci
Nanci,I've been taking Imodium as a preventive for about almost 2 months now. My doctor said that it has almost no side effects and was safe to take long term. Originally I only took it if I was going out but found that it had a real rebound effect when you stopped taking it. Taking it on a regular basis has made a real difference. If I'm eating out I may take 4 but usually just 2 per day will control diarrhea and sometimes I will skip a movement and go every other day. What a difference from my usual bathroom routine! I still would stop in a minute if Lotronex came back but the Imodium beats Levsin any day! Anna
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·I have tried just about everything, from herbal cures to Absocal; the only thing that worked for me was Lotronex till it was pulled. My GI guy gave me Bentyl and it has worked like a charm. No problems now; going on a month. No pressure, no D. Don't give up, keep trying things till you find something that will work for you.Best Wishes,Bob
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