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Discussion Starter · #1 ·
Saw my gp today and got an rx for Zelnorm. My Doc really knew nothing about it - I am the first patient that she has prescribed it for. Will let you know how it works out - keep your fingers crossed!
Sky
 

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Skygirl, I have been using Zelnorm for about ten days now, and it has been great! Week one had a couple of days of D (imagine that), but since than, I feel like I have a new lease on life.The only downside is that my insurance will not pay a single cent towards the Zelnorm, so I have had to make some budgetary changes, but worth every cent.I hope you Zelnorm works for you, too!P.S. Thanks to everyone in this group for providing the information I needed to inform my doctor about Zelnorm.
 

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Discussion Starter · #4 ·
How lucky I am that my insurance covers the Zelnorm! Otherwise, I don't know if I could afford it. It is $135 for a one month supply here in Canada. I am going to get the rx filled tonight. I am concerned about starting while I am at work because of the D. But seeing as it is to be taken in the am and at lunch time, hopefully that will wait until the evening!! Fingers crossed!
 

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Congratulations to us all. And Laney-001 where have you been? Zelnorm was approved by the FDA on July 24th in the U.S. I will celebrate July 24th from now on like it's my birthday because in essence Zelnorm has given me a new life. I've suffered with IBS-C since around 19 or 20 years old and I'm now 53. I was in the trials in Chicago for Zelmac (Zelnorm) in June 2000 and had wonderful results with it. Then I thought approval was right around the corner, but I've ended up waiting for over 2 years. My GI doctor was kind enough to give me some samples on Monday. I had just come back from vacation and eating different foods and drinking different water and not enough water had done me in worse than my normal every week backup. I drove to my doctor's office, got the samples and had my first pill with dinner. Like the miracle drug that it is, the Zelnorm worked within 45 minutes of my dinner. I casually walked to the bathroom (instead of racing there when I've had to resort to some harsh laxative to be cleaned out), and I had a natural, big and plentiful bowel movement for the first time since being out of the trial studies. I feel like a new person and I'm buoyed to know that I don't have to wonder about everything I eat in terms of "when" it's going to come out of me in a week or 2. I don't know yet whether my insurance will cover Zelnorm but it's a pretty big company and I don't think there should be any problems, but like the other writer said, even without insurance coverage, the Zelnorm is worth every cent of the cost. Skygirl, and others congratulations on our Zelnorm success.
 

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Hi to Gswanson and others. This is my first attempt at a chat. I started Zelnorm last Friday. So far....NOTHING!! I can't believe it! I've waited for this drug to be approved for so long. My doc has been less than helpful. I had to tell HIM about the July approval of Zelnorm, upon which he gave me 60 pills with absolutely no accompanying instructions, via his nurse. I will be picking up a one-month supply at the pharmacy tomorrow. (Hope the insurance covers it.) Perhaps there will be instructions as to best way to take it. Thanks to all for the info. I've gleaned here. Anyway, in case anyone else has the disappointing results I have had to date, I thought I'd share with you all some information I received from a very kind person at the University of North Carolina's Center for Functional GI & Motility Disorders: Apparently, it is advisable to begin Zelnorm treatment with a clean bowel. She recommended having your doctor issue a prescription for a colonic preparation, as you would take prior to a colonoscopy. Then, she advises, take the Zelnorm 30 minutes before breakfast and 30 minutes before dinner. I was so grateful for her kind advise, I thought I'd share it.
 

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Jeffrey, thanks for the information about Zelnorm being available now in pharmacies. At least I'll know that by the time my sample box runs out, I'll be able to fill a prescription. Additionally, to the post about Zelnorm not working, I sympathize with your waiting and then not having any results, but Zelnorm obviously does not work for everyone. I had a prescription insert in my bag that the nurse gave me with everything about Zelnorm on it. You're to take 2 6mg pills a day, preferably on an empty stomach just prior to eating. So maybe one in the morning and one prior to dinner. It's amazing that a doctor would suggest Zelnorm works better on a completely cleaned out colon because that defeats the purpose of its intent and that is to stimulate the gut and get bowel moving out of the colon. As I said, I was so backed up after returning from vacation and the first Zelnorm pill I took gave me that natural urge for a bowel movement with a very, very full colon. Since I'm pretty cleaned out now from my plentiful bowel movement with the first Zelnorm pills, as the days go on, the two pills a day aren't making me go to the bathroom every day, but every other day is certainly better than every 10 days. I would certainly finish the sample pack to see what happens. All of us are different and what works wonderfully for some, may not work for others. In any event, there are studies going on now for something called Dexlox and you might be one of the people that that helps. Keep the faith!
 

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Good Evening, I started taking Zelnorm a month ago. It worked great for the first 4 days. My period was due the fifth day but ended up being 4 days late and it came with no pain which is very unusual. I also flowed heavily which I haven't done in over a year. Four days before and three days during my period Zelnorm did nothing. Everything was stopped. I had to take some Aloe pills I had to help me. When I was emptied (somewhat), I started Zelnorm again. It didn't work!! I was very disappointed. Then I thought that maybe I should take more, maybe my system needed a bigger boost than the normal dosage. So instead of taking 1 in the morning and 1 at night, I took, and am taking, 2 in the morning. It works!! I don't want my body to get too familiar with Zelnorm so I've decided to do this every 2nd day instead of every day. The only down side (I wouldn't call it a down side but...) is that it comes out mostly in Diarrhea. There's some hard pieces mixed in but a lot of water too. This happens about an hour after taking Zelnorm, then after noon I'll have a small bowel movement (no diarrhea). I haven't mentioned this to my doctor yet! Honestly I'm not sure if I want to mention it, I'm afraid she won't prescribe it to me anymore. Do you people think it might be hurting me in any way by taking Zelnorm this way?
 

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Thanks to GSwanson for the mention of Dexlox. At least I'll have something to cling to if things do not improve for me with Zelnorm. I had not heard of it before and will proceed now to research Dexlox. Incidentally, I am still not having any results. I had just taken my evening dose of Zelnorm, along with a dose of Miralax to try to get things going. We'll see what happens. Thanks to everyone for sharing all this information. It really helps! I'll keep checking back.
 

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Discussion Starter · #14 ·
Well I started Zelnorm on Friday with some results. I felt quite naseaus fri night, but no other side effects. It seems to releive some bloating over night, but not through the day.
It seems to be working better if I DO NOT eat for a few hours after I take it. This morning I took it at 8 am and didn't eat until 12 noon. I had a BM and the bloat decreased significantly. I took the second pill at lunch, shortly before I ate and I haven't felt any results this afternoon. Over all, I really haven't noticed a significant improvement. Perhaps I will take a little more time than others though.
Still staying positive.Skygirl
 

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Skygirl,Persevere.I felt awful on Zelmac at first.Then,through this board I learned of ways to play round with the dosage.Now,I take 3mg about an hour or more before breakfast and then 6mg at night before bedtime,at least two hours after the last meal/snack.This works well for me,though I also watch my diet and water intake.I'm also seeing an osteopath for abdominal massage and,since starting this,the Zelmac seems even more effective.Good luck.
 

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Thanks a bunch. I'll call mine today. My GP-Dr. Chris Thompson in Smyrna. He may have some, I'll ask. I appreciate your offer though, and may have to talk to you again about it.
 

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Discussion Starter · #18 ·
Thanks for your doasage suggestions. I have been reading the Zelnorm board to see how others are taking it as well. I think that I am going to try to increase the morning dosage as it doesn't seem that the one I take in the afternoon does ANYTHING at all, wheras the morning dose gets things moving...or, now that I think about it, perhaps I have that the wrong way around?? Maybe I should take the stronger dosage at night? Well, I will give something a try. thanks!
 

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I started taking Zelnorm on Monday, one 6 mg tablet 2 times a day. While I've had only a slight reduction in constipation thusfar, I've had an ENORMOUS reduction in gas and bloating. I'm really very happy with this med. I've had severe IBS-C/G for four years, and this is the one and only med that has helped with the intestinal gas problem. Hopefully, it will become more effective for my constipation, but even if it doesn't I'll continue to take it for the gas reduction benefits.
 
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