Comments on: Zelnorm alternatives following recent recall

By: CMay

CMay — Fri, 09 Oct 2009 14:53:06 +0000

Zelnorm was the only medication that worked for me! I was shocked when it was taken off the market. Now I suffer the misery of IBS that controls my life. I have a doctor’s note to be allowed to go to the bathroom whenever I need to because my IBS is so unpredicable. Once the weekly routine begins I could be in the bathroom for hours… I need to know where each bathroom is no matter where I am just in case. This is a horrible way to live. My digestive system controls my life and thus dictates who I am.
When I was lucky enough to be on Zelnorm my life was different. I did not even think about the bathroom. I forgot that I had IBS. I felt normal. It is sad to think those days are over. I wish it would be put back on the market.

By: Barbara

Barbara — Mon, 21 Sep 2009 22:56:32 +0000

I have suffered with IBS with constipation for 20 years. My Dr prescriped it for me 6 years ago. It was the only thing that ever helped me. I’m in pain all the time now. I WISH they would put it back on the market!!!

By: Joelle

Joelle — Sun, 06 Sep 2009 04:21:01 +0000

I to could only wish that Zelnorm would come back on the market..I go for weeks without going to the bathroom, the pain bloating nausea is just unbearable… All other remedies “DO NOT WORK” they make me sick…My PCP had told me that my GI dr would be able to orphan Zelnorm, since this is the only drug for me, but the GI dr said he could not…Any suggestions?

By: Kay

Kay — Fri, 14 Aug 2009 03:38:58 +0000

After years of suffering from constipation, Zelnorm was given
to me,,,I had a new life, felt great, looked great, was down to
2 tablets per week and no constipation. It was a miracle, I am now
back to suffering and total misery, nothing is working. I pray every
night that this will come back on a market that I can purchase this
drug…I have heart problems for years zelnorm did not effect my
heart. It was what my colon needed to be normal…Is it a govern-
ment, possibly a market situation and pulled because it was not
going to make them enough money especially with the law suits…
I just find it all hard to understand,,,there are drugs fda approved
that are so dangerous but are still being sold….whats the answer?

By: Mo

Mo — Fri, 07 Aug 2009 18:55:01 +0000

I wish Zelnorm would come back, nothing worked for me except it.

By: sasha

sasha — Thu, 30 Jul 2009 22:48:40 +0000

I too wish Zelnorm was available. I have tried everything. Even being a Vegan. I guess I just need to eat raw veggies for the rest of my life. I have had numerous tests done from the GYN and GI doctor. I am very miserable and want to be my old self again.

By: J.Jones

J.Jones — Thu, 19 Mar 2009 19:11:03 +0000

I totally agree with the fact that all drugs are not for everyone, but Zelnorm was for me!! However, i do know, that i have tried everything and at this point, I’m miserable. My quality of life has/is deminishing daily. Pain and discomfort keeps me from performing daily functions. Bloat keeps me from wonting to, well get out of bed, since my pj’s are the only comfortable clothes i seem to have. I have been taking Protonix since the recall and at first it helped with the pain. I unfortunately tried the generic and now, neither works for me. Putting that drug back on the market would restore the quality of life i once had. Amatiza, tried it. Horrible stuff!! Youll need to wear a diaper with that one. Now thats something you can recall. They want perform surgery so i have no choice but to live like this.

By: Lindsay

Lindsay — Tue, 10 Feb 2009 22:20:27 +0000

I have dealt with constipation my entire life and at the age of 25 began to experience severe abdominal pain and bloating. After many testing procedures with a gynocologist and a GI specialist they concluded a diagnoses of IBS w/constipation. The abdominal pain was severly affecting my quality of life so I was then introduced to Zelnorm and after two weeks the pain, bloating, and constipation miraculosly disappeared. Several times I tried to stop taking Zelnorm however the IBS symptoms would come back just as severe, so my GI presribed it for me for the long term. My life was normal again….after two years on Zelnorm I became top sales rep for my company and was acheiving the dreams and goals I set for my life. Then the day came when they recalled Zelnorm and everything changed. Since Zelnorm was made unavailable to me I have taken so many different types of medications, I’ve had multiple spinal block procedures attempting to relieve the abdominal pain, and most recently inpatient surgery (which was horrible). Still, nothing works except Zelnorm (tegaserod maleate) and my quality of life is just getting worse. I don’t understand why a medicine that helps me and so many others like me is virtually impossible to get. All the time I see commericals for medications that have so many side effects and risks and I feel so cheated. I have tried EVERYTHING!!! If you’re still reading this incredibly long sobb story….and you know of anything that works like Zelnorm. Better yet….if anyone knows if the FDA will ever hear the voices of others in my situation and give us access to a drug that means so much to our quality of life…..

By: pamela

pamela — Fri, 23 Jan 2009 20:20:35 +0000

Zelnorm was a miracle drug for me, eliminating constipation, bloating, and gas. Replacements cause nausea and/or do not work as effectivley. Recall was simply Novartis’ response to FDA request for further testing – this was a monetary decision, not a safety decision. I am proof that when Zelnorm worked, it worked wonders. I’d go back on it in a second if it was made available. The change in my life and physical well-being was miraculous. Interesting that a drug that was primarily effective for women is considered one not worth additional testing.

By: theresa

theresa — Sat, 27 Dec 2008 22:28:10 +0000

I am a strong supporter of Zelnorm. With just about every medicine on the market there are some adverse side-effects. It would be great if one drug worked for 100% of the population, but unfortunately in the real world that is not the case. I wonder what percentage of the world are helped with first generation drugs, and why they had to develop second and third generation drugs, and are still working to develop further drugs in the same categories. Would you say to those that Penicillin helps, but cause a large percentage of the population have side effects it is not longer available. I think not, rather i know not. This drug should be remarketed with stricter guidelines. Simply state what the risks are and let the person and their doctor take the risk. Me personally the benefit greatly outweighs any risk there they could be, even death.

By: Demari Monico

Demari Monico — Wed, 11 Jun 2008 01:47:05 +0000

I am a strong supporter of Zelnorm. I suffered from IBS with constipation and it was dibilitating on a number of levels. Since this drug has been removed from the market I have spent each day dealing with the day to day struggles that this condition brings. I have to keep two wardrobes to accomodate the ever changing bloating that can be so extensive it may require me to wear maternity clothing. I agree with Ms. Francis & Ms. Burke. The risks associated with this medication are not great enough that I want to leave this condition untreated. Those 5 – 11% of women may not seem like a significant number to the FDA but if you ask those women what kind of results they had that 5 – 11% may seem a bit more real as you realize how this medication changed their life.

By: Tanya Francis

Tanya Francis — Fri, 02 May 2008 05:56:37 +0000

I have to agree with Ms Burke. I have severe IBS with constipation effecting my entire digestive track. I went for months with other medications where I was throwing up my bowel and had pain worse then when I had 2 kidney stones. Zelnorm was the only thing that worked for me and allowed me to start being able to function daily. I understand that some people have had problems with it but that happens with any drug. I can’t understand why it is not made available for those of us that have had no problems after a year and half of taking it as long as we understand the possible risks. For myself the risk is better then what I have had to go through on a day to day basis since Zelnorm was taken off the markey last year.

By: Austin Kirk

Austin Kirk — Fri, 18 May 2007 02:37:39 +0000

Ms. Burke, Thank you for sharing your experiences. Certainly you are not alone as an IBS sufferer who found Zelnorm effective in treating your symptoms. However, the clinical studies have demonstrated that it is effective for a very small number of users (approximately 5-11% of female patients). In addition, wide promotion of this medication by the manufacturer has resulted in many users receiving the drug off-label, even though it is only intended for IBS with constipation.

The FDA has recognized that there is a population for whom Zelnorm may be an acceptable treatment alternative, and they have indicated that it is possible the drug could be reintroduced in the future for a much more limited and controlled population to reduce the risk of heart attack, stroke and death associated with the drug. At this time they have found the risk of Zelnorm side effects outweighs the very limited benefits the drug provided, which is whyit has been removed from the market.

Our office has been contacted by many Zelnorm users who did not have the same experiences as you, many of whom suffered heart attacks, strokes and ischemic colitis which could have been avoided if the manufacturer had warned of the danger.

By: sheila gay

sheila gay — Wed, 16 May 2007 17:06:07 +0000

I have been on zelnorm, for a period of 8 or 10 years. I now have IBS from takeing zelnorm. I have adominal cramping, from eating certain foods.I stay bloated all the time. I have contipation problems. which zelnorm did not help.I uaually go to the bathroom about once every 2 weeks. I now have crohns disease.And colitis of the bowels. I also experince chest pains. I have been to my DR. for this problem, and he told me to flush the zelnorm down the toilet. I never had any of these problems, until I started taking Zelnorm.