HI GAIL: _____________________________________"Why hasn't this generated more excitement on the BB? " _____________________________________Possibly because, in reality, it is not a very good solution and not for very many c-types sadly. Main issues:1. only tested on women2. only seems to work a little beter than a placebo...results vary between test group and control group from 5% to 11% diff. between the two in outcomes..thats a bit thin.3. seems to develop tachyphylaxis quickly; in those who do experience some benefit it usually happens in the first moth and then tails off over a 3 month period until you are back where you started...so the drug is kind of a teaser, which can be even more frustrating for the patient who does get some benefit.This is the toughest population of so called "Ibs'ers" to help..so indeed anything which shows any possibility that it will enhance the lower gut motility is welcome, but Zelnorm is a little like throwing a victim of the Titanic an inflatable raft with a leak and no repair kit.So maybe, esp. among c's who have been following the whole thing, it just dampens the response a bit.From a personal observation perspective, the doctors I know in Europe who work with all the subpopulations suggest that for these victims the most promising modality right now is biofeedback. There seem to be no really good solutions in the pipe at the moment so this stopgapc ertainly is something to try out as it will help some people to some degree, and bless them if it does.
Tahk you Mike for your eloquence! To Gail: I am C-type and have tried Zelnorm already. I had little improvement, sadly.Believe me; if I hadn't already used the drug:I WOULD BE DOING BACKFLIPS!For now, I am just happy for all those the drug has helped(like you
) and those to come.I am optimistic that this catagory of drug is only the first, the beginning, of a world of breakthroughs toward the relief of IBS pain. Very good news, indeed!
Well, all I can say is I've been taking it since last September and it hasn't decreased at all in effectiveness. It has given me my life back. I was housebound and had tried everything out there, including elimination diets and biofeedback, but nothing had an impact on my IBS until I got this drug. I can now work, socialize, and join the human race again. I realize not every drug works for every person, but I would think we would be glad each time there is something new introduced that works for some IBS sufferers.
Gail, I'm happy for your success and I think others are, too. If others haven't found as much help, it doesn't really take away from that and there is no expectation that you do anything about it. It's somewhat similar to the male problem. just asking for help for men doesn't take any drugs away from women, does it?tom
Gailsusan,It would be so great if everyone had the success you do, unfortunately you seem to be the exception by far!!!Mike is right, it has been a huge disappointment and I agree with his analagy regardig the titanic. Studies have shown the success figures that he quoted.I myself, along with others have tried it with huge disappointment. The company have blown up the benefits way out of proportion ... well, lets face it, the feedback speak for themselves.Of course there are the few lucky ones, however not the majority. Anyway, maybe something else will come up who knows. Or maybe we need to do something in conjunction with Zelnorm.(??) We know its not a cure all, but is it much good, based on feedback and statistics?!
It saved my life. I would not be here right now if it wasn't for Zelnorm. Life wasn't worth living and I had planned to end it. I was losing my house, I had lost my 20 year marriage, my career, and most of my friends. So was it worth it? From my perspective, yes it was. I've heard similar stories from others, so it hasn't just been me. Just because the statistics say it doesn't work for the majority of IBS sufferers, doesn't mean it isn't an important breakthrough, if you happen to be one of the ones it helps.
Gail,You are so right. Any breakthrough is major.BTW,we all appreciate your caring and grace in choosing to remain on the BB and assist others even though you are now well.This shows character.Thank you!!
Linesse, It shows how strong the relationships are that we build with each other, too. This is a community, just like my neighborhood. I "know" people here, like you, for example. You have a sweet, lovely personality that comes through your postings. It's funny to have relationships with people you've never met, but I care deeply about some of the people on the BB. And, I do care about the people who are still suffering with IBS and come here for help. I remember how desperate I was at one time. I can hear the desperation in other's postings. It's a real tough illness. Thanks, Linesse, it is nice to be appreciated.
I do wish so desperately that I could find some relief in some of my symptoms instead of them getting progressively worse.I will try Zelnorm again, however when I took it, it literally had no effect on me at all. I would literally do anything to gain some quality of life. I too have lost everything and been housebound for nearly four years ... got to a stage where I am too scared to walk out the front door and thats on a good day ... when I am able to walk, because that too hurts a lot.GailSusan, I am so happy for you, I wish we could all get at least half the life altering effects you have got
Maybe that day will come one day, however I hope it wont be too late for some of us.I feel so much that life is just passing me by and I feel so powerless and out of control. I cant believe that I once laughed, smiled, drove, was able to walk around freely and even used to be able to go shopping ... so much seems like another world.Maybe this time Zelnorm will have some positive effect on me ... I jus wish I knew how to enhance the effectiveness .. I know it has made an incredible difference in some people's lives. Hope to hear lots and lots of more success stories soon!!
(So sorry, I'm going through a real rough time right now ... so hard to break this cycle and so badly needed someone to "talk" to)
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