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Zelnorm didn't work for me either, and with all of the negative press and possible health risks, I'd really encourage you to try other things. I know all IBS can't be controlled without medicine, but a lot of it can, and like Heather stated, the medical evidence just doesn't support the safety of this drug. It is a personal choice, but you are wise to be aware of the risks.
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God is Faithful!
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About Lotronex
#182494 - 06/01/05 09:31 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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Lotronex was pulled from the market temporarily. The outcry from IBS sufferers who had found relief from it prompted the FDA and GlaxoSmithKline (the makers of Lotronex) to make it available again under controlled conditions.
Here are a couple of Website where you can read about Lotronex:
Lotronex Home Page
FDA Announcement
If I understand correctly, the 11 women who died, died of ischemis colitis. The second Website explains what that is.
I spoke with my GI guy about Lotronex. He is in the prescribing program and feels it is a very valuable drug for intractable cases of IBS-D. He claims that it is safe if patients who are on it stop taking it and call their physicians at the first sign of constipation. My GI is a good guy, bright and knowledgeable, but I think he's too quick to prescribe and especially too quick to prescribe drugs without a long track record.
My own feeling about Lotronex is this: I'd try everything other reasonable solution first, but if my IBS had continued to be as bad as it was before I started Heather's diet, I would have definitely been willing to risk Lotronex.
My advice is that if you are taking Zelnorm and it is important to you that it stay on the market, write or call the FDA to say so. It might be even better to contact the makers of Zelnorm, express your concerns about it being pulled, and ask them what you can do to influence the process.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I have IBS-C(really bad). I have been on Zelnorm for a while now and when I first got on it I could only take a half of a pill at the most because it would really upset my stomach. For the past couple months I have been taking two whole pills a day and sometimes it works and sometimes it doesn't. When it does work its great, but I just wish it worked all the time. I took it last night and all of the sudden I had the worst cramps I could not even stand up and I was just sweating. My boyfriend was sitting like 6 ft awaya from me and he could hear my stomach loud and clear. I had not been to the bathroom in like 4 days so I guess it just really upset my stomach and I had one of the worst upset stomachs I had ever had and I have had them for 9 years. I was really scared last night, but its scared because I would actually take it again because at least it worked. I have tried EVERYTHING else and I am so frustrated! 
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well sorry it didnt work for you and some other people but dont reuion it for others who it could work for!it saved my life and im glad i took it.
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Oh my!
#182578 - 06/01/05 01:01 PM
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Kristin940
Reged: 05/04/05
Posts: 104
Loc: Massachusetts
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Wow, thanks for all the information re: Zelnorm. While it has worked for me, I also have my days where it does not produce results at all. Having said that, your link (Heather,thank so much!) to the FDA warnings really put a lot of my biz symptoms into perspective. I've been suffering from chronic insomnia and dizzy spells recently, and I am wondering if it might be attributed to the medication. The scary part for me is that my doctor just upped my dosage to 6 mg 3 times/day!!!!!!!! I am going to get in touch with him, and speak more about this!
Thanks so much for all the info!
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I'm sorry it didn't work for me either. But if you read my post carefully, I said I was glad it was working for you and that if it had worked for me, I would have probably continued to take it despite the risks.
I'm not trying ruin it for anyone. But it is true that there are a lot of dangerous drugs out there that doctors are prescribing only to learn about the dangers after the damage has been done and people have suffered permanent damage, or worse, death. Did you read Heather's reports on what these drugs have done? I'm not making this stuff up scare people.
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Did you try decreasing the amount & frequency of your Zelnorm doses? I only got D the first couple days because I took too high a dose & too often. When I cut back to 1/4 a pill (taken only occassionally instead of daily), I no longer got cramps or D. Now I take Miralax daily & then take 1/4 of a Zelnorm pill if I'm feeling C or uncomfortable.
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I only take 1/4 of a 6mg pill on occasion. It helps me a lot. I tried a 1/2 pill at first, but that was too strong. Gave me horrible cramps & D. Could be that your body just needs a higher dose.
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Jules
#182614 - 06/01/05 02:08 PM
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BL
Reged: 06/01/03
Posts: 3522
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Ahh, so you are having a boy! Congratulations! I am partial to boys since I have 2 of them (13 months apart).
As for the Zelnorm, I would be afraid to take it long term like your doctor suggests for his patients---simply because I read somewhere that there have not been any long-term studies done on it. They don't know what effect it will have on people who take it long-term.
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My mother took Lotronex for awhile for IBS-D---and she ended up hospitalized with ischemic colitis. It was awful! The most painful and scary thing she'd ever been through.
She was one of the fortunate ones because she had a complete recovery. Many of those who had this either died or had to have parts (or all) of their colon removed.
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