Zelnorm anyone?
#10467 - 06/02/03 06:27 AM
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artist
Reged: 05/28/03
Posts: 132
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I have been taking Zelnorm for about 3 weeks, 6mg 2X/day. I am female IBS-C w/pain,bloating. The first few days I had unpredictable and sudden D. I reduced my dosage to 3mg 2X/day for 3 days and then returned to the regular dosage without any problem. I have noticed a decrease in bloating and I have had daily BM in AM. I still do not feel like I did before IBS but I have seen some improvement. I would like to know if anyone else is taking Zelnorm and what your experiences have been. Has anyone been taking it longer than the 3 month period that the drug was tested for in trials? Why is it considered a "short term treatment"? My GI doctor wrote my script for 6 months. At that time I knew nothing about the med, so I didn't question this. I don't see him again until June 18th. If anyone has been on Zelnorm for a longer period of time, does it continue to be effective? I realize all drugs can have side effects, but Zelnorm is so new that I don't think anyone knows what long term effects might be. I have never had to take a med regularly before and I find it a little scary. In an internet search, I read something connecting Zelnorm to an increased possibility of ovarian cysts. I am pleased that I am getting some relief, yet concerned at the same time. Does anyone have any feedback for me? Thanks
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I'm now taking 3 mg of Zelnorm twice daily (6 mg twice daily caused constant D, which was unpleasant, to say the least). I'm tolerating it just fine and have enough samples from the doctor to last for a few weeks. He thought it would be enough to last until I could see a local gastroenterologist, but my appointment with him isn't until July 8th. So I guess I need to call the doc and see if he wants to give me more samples, or write a prescription, or if I should just stop taking it when I run out. Hmm, I guess that didn't really answer your questions--sorry.
If you find the link between Zelnorm and ovarian cysts, I would be interested to read it--I've already had what I suspect was an ovarian cyst (they took my uninflamed appendix out but never diagnosed anything) and I'd like to avoid a repeat of that experience!
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I have been on Zelnore since the 2nd week in January. Before Zelnorm, I was always constipated. I take 6mg 2xday, I now only occasionally get C. But I do get D now and then. It has helped with the bloating a little, I still get bloated and am very sensative to pressure or touch. I have 2 sets of clothes, good belly clothes(size 6) and bad belly clothes(size 8-10) I was a bit confused when I read that it was a short term treatment, but my doctor assured me it was ok to take indefantly. I haven't notice any decline in its effectiveness. Hope that helps!
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Taking it one day at a time.....
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TessLouise, if you type in "Zelnorm ovarian cysts" for an internet search your will find several sites related to this. If you cannot find any of these, I will try and post the specific sites. I don't want to overreact to anything, as all drugs can have side effects, however I would like to know as much as possible about what is going in my body. I also had a fairly small ovarian cyst that burst- not fun, I ended up in the E.R. Read the info if you have a chance and let me know what you think. I intend to ask my GI when I see him, but I assume he will brush it off (not his area).
How are you feeling on the lower dose of Zelnorm?
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Michele, thank you so much for your reply. You symptoms sound so much like mine. I think perhaps because the drug is so new, they just don't have any data on long term use. The clinical trials were 3 months.
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Hi - Do a board search on "Zelnorm" and you'll see quite a few past posts from people who have tried (or are currently taking) the drug.
It does worry me that your doc just sent you on your way with a six month prescription. It's not approved for long-term use the drug literature says 4-6 weeks max, with one 4-6 week extension allowed. Here's the site web page
web page
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Hey artist-
I was just formally diagnosed with IBS-C yesterday, the doctor started me on Zelnorm only 1 in the am then by Friday I should take 2 a day depending on if it is helping, It moved things yesterday but not much help today, but I do have a sinus infection so that can contribute to. Will let you know in a week how it goes, keep me updated with your results.
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Screen Name: Nan275
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RLU, Just a heads up about the first week of taking Zelnorm, many people experience sudden, unpredictable D. It is usually just 1 or 2 episodes. It is not like the typical D you get when you are ill or have IBS-D. I did not have cramps or pain, it was just like someone turned on a faucet.  YIKES! This was temporary though and happened when I was taking the 6mg 2X/day. It seems to have helped me. I still have some pain/bloating, but I am regular. Did your doctor tell you how long you could take this med? There seems to be conflicting info regarding length of treatment.
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OK, it has been a month on Zelnorm. I thought it was helping with the bloating a little. The past two days my belly has been as huge as ever. I am seriously thinking of stopping the med. The risks seem to out weigh the benefits at this point. Who knows, perhaps I would be even worse without the Zelnorm. FRUSTRATION!
Also, unfortunately I cannot drink fennel tea. I have calcium oxalate kidney stones. My urologist says that fennel is very high in oxalates and he doesn't think filtering it through my kidneys is a good idea.
I think I am back to square one. Is anyone else having success treating the bloating with Zelnorm? Should I stick with it?
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I was interested in your post. I have taken Zelnorm--6 mg. 2 X day since January too. I was interested in your mentioning you have D occasionally. I haven't had any until the last 3 weeks. The first week it was really bad, but now it's just occasional. I thought maybe it was the Citrucel I'm using. I changed to the Clear Mix one 3 weeks ago. My Dr. says I can take Zelnorm for a long period too, but he might have me take a "drug holiday" from it to see how I do off of it. I still don't go everyday by any means. And, still have tons of bloating. Guess I was hoping for better results from it.
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