Fight for your right to Zelnorm!

Can anyone tell me where to get Zelnorm out of the states? Pulling if off the shelves has made my life really difficult. I noticed Sophie said she got Zelnorm in Mexico. Does anyone know where in Mexico? Is it still sold in Europe? If so, where?
I would really appreciate any help that is out there.
Thank you.

Please, please, please put Zelnorm back on the shelves. I have suffered for years with IBS and I have tried more remedies and medications than I wanted to, but when you suffer with an intestinal disorder, you do what you have to. I finally found Zelnorm about a 1 1/2 ago and I am finally feeling normal, at least more than ever before. Since this has been taken off the market, I already and suffering with daily bouts of IBS symptoms and either going to work and suffering all day or missing time from work. Please let the individual make the choice on whether to take the drug or not, and not someone else make that choice for us. If I felt the drug was causing me other problems, I would not take it.

I have been suffering with IBS syndrome since my hysterctomy about 3 years ago. I started to take Zelnorm for about a month and than they took it off of the shelf. And for the first time in 3 years I was able to have a BM everyday. I had lots of energy and and felt good for the first time in so long. And now I am back to the good old store bought stuff that don't seem to work. It is very important for sufferers to have something that can work to be able to have some type of comfort. I am very upset that they just ripped this out from underneath us without any warning. I believe it should be our choice to take something that work perfect for us that suffer each and everyday.

I am extremely upset that Zelnorm has been taken off the market. I consider it a wonder drug for my condition of IBS that I have had for most of my life. I have tried everything throughout my 39 years and nothing has helped me like Zelnorm. My doctor prescribed Amitiza as a substitute, and I am having awful stomach cramps and bloating as I am writing this email. I have to stop taking the Amitiza, and I don't know what I am going to do to cure my medical condition. Please bring Zelnorm back with perhaps a warning for people that have heart problems or high blood pressure. Sufferers of IBS should not have to deal with losing their only relief because of some other cases.

does anyone know of any doctors willing to do the IND for the FDA. My doctors are not allowed because of their health group policy. I am so miserable. All I have had is carrot and apple juice for a month. I am in extreme pain. I have tried to order from Mexico but I haven't received it.

Last Sept.06, I started feeling really awful. Pain, bloating, discomfort, irregular bowel movements, the whole ball of wax. I thought it would pass, but finally in Dec.06, I went to the doctor after ruling everything else out & several medications, I was diagnois with IBS. I was prescribed Zelnorm in March of 07. This is truly a miracle drug. All my symtoms went away after only a few doses.I am very disappointed with them taking it of the market. 13 people out of a 11,000 that already had heart problems suffered strokes & heart attacks. What about the rest of us that don't have these problems? Can't they just run a some kind of test on the people who choose to take zelnorm for the wonderful relief that it gives us in every day life? People who don't have IBS really don't know what it's like to live in pain & discomfort.

I have suffered from IBS for as long as I can remember, even back into childhood. Summer of 2006 I described my symptoms to my doctor. He said it sounds like Irritated Bowel Syndrome. He prescribed Zelnorm. After 1 week I started feeling like a "normal" human being. No more bloated stomach or gas with regular bowel movements. I questioned why I struggled with IBS for so long without talking to a physician. When I received a letter from Medco, saying Zelnorm was off the market, I began to feel desparate, and still do. I can't imagine any drug providing a better solution than Zelnorm. I am hoping to see the drug back on the market, or some type of solution.

To put it simply - I am miserable without my Zelnorm. Everyday is a struggle! Please bring it back. At times I feel so desperate I'd buy it on the street if I had too!

I have suffered with IBS for over 10 yers. At one time surgery was recommended to remove part of my colon. I refused and watched my diet very closely. Finally I started Zelnorm, I have never felt better. Then it is taken off the market. I tried other meds, but the side effects included more bloating, peripheral edema, nausea, and a few others. I wish Zelnorm would be put back onthe market, I would be intrested in being part of atudy if that is what it takes. I am now back to hurting and constantly being bloated and just do,t feel well.

I am so upset that they have taken Zelnorm off of the market. This is the second time this has happened and for similiar reasons. First I was taking Propulsid and it worked very well for my problem and then that went away and now Zelnorm. Why can't they just screen patients more thoroughly instead of making those that legitimately need the medicine suffer.

I have been on Zelnorm since 2004 and in that time I have gained weight and had lots more energy. I am horrified that Zelnorm has been withdrawn and cannot believe that a government that DOES NOT CARE about life and death in Iraq and Sudan can suddenly care so much about possible heart complications in a small population of patients with, apparently, pre-existing conditions. I, too, do not want to belittle anyone's dangerous heart problems but really, for the first time in maybe 10 years I was eating just about what I wanted to, and it was GRAND. People who digest normally just don't know how lucky they are; same with folks who say "Gee, you're so skinny!" Well I'd gladly weigh 20 lbs more just to: wake up, be hungry, eat breakfast, get hungry again around lunch or whatever, eat, and then be hungry and enjoy a dinner with family. Or to go out with friends and be able to eat the salad, a bit of bread, AND some of the entree. Yes, food is just for nourishment...but it's not, is it? It is so hard to stand there, awkward, unable to eat at a party, a wedding, a holiday. WRITE LETTERS!!! I will.

PLEASE reintroduce Zelnorm. Without it I have felt absolutely miserable. I've been taking Amitiza 24mcg for 3 weeks as an alternative. It is NOT helping whatsoever. Please reconsider. Many people truly depend on Zelnorm for relief and to live happy and healthy lives. Thank you.

Thanks for all the comments. I just wanted to clarify that anyone who is asking for Zelnorm to be returned should contact the FDA or Novartis at the addresses given - much as I would like to believe that FDA officials read this little blog, I really don't think they do, and obviously I don't have any power myself to get Zelnorm back.

So if you want to make your voice heard by the people in power, please make sure you write to the FDA. Thanks.

I just started on this wonderful medicine, Zelnorm, and was ready to refill my prescription when BAM.........hit hard with the fact that it was taken off the market! I dont have heart conditions, I have BAD BOWEL condidtions! I am otherwise very healthy and want my medicine back. I am now taking the Amitiza, and it makes me feel horrible! I get very flushed like I am sunburned and dizzy. This is just after a couple pills. I hate it!! So, ok, I go for yet another exam .fine..just bring it back PLEASE.

I along with many others are suffering terrible please put zelnorm back on the market!!!!!!!!!!!!!!

My colon basically quit after an appendectomy and I developed an impacted colon. Even though I am a vegetarian, the doc I was seeing put me on fiber, and when increasingly high doses only enlarged my abdomen and did not enable me to empty my colon, he added increasing doses of laxatives to the mix, again with no results.

What finally worked for me was smoking cigarettes after taking an antispasmodic drug. I still suffered from extreme distention and couldn't even sit up after 4 in the afternoon due to extreme distention and pain, but at least I didn't get another bowel impaction.

When Zelnorm became available, I had my after-4 pm life back, had more normal stool, and best of all, I was able to quit smoking. After nearly a year as a non-smoker, I am running out of Zelnorm and I am frantic. My bowel function has deteriorated noticeably since I went from two tablets a day to one to try to stretch out my supply, and I don't know what I'm going to do when I run out.

The idea of resuming smoking is depressing and revolting to me, and it's certainly a greater cardiac risk than Zelnorm. But nothing else worked before Zelnorm, and I tried all kinds of fiber and laxatives and combinations thereof for years trying to find something that would work so I could quit smoking.

I will write the FDA, of course, but I wanted to register my comments as one more person whose life was ruled by a colon on permanent vacation before Zelnorm.

I have had the late effects of polio from the waste down so to speak. I have had pain in the right side of my belly for many years. I could not go to the bath room with out straining a gasget or passing blood until I took Zelnorm. When zelnorm came out it was a miricle drug that help the pain and stoped the contispation that I had. I have extreeme problem elemitating a bough movement. Please let me continue to have the drug that has help me since it has come out. How can you be so crual to let me suffer without it! You allow people to smoke in my face but you wont let me have something that has help me so much in my life. I can't believe this is happening to me. Please let me have this back.

I can not express how much pain I am in since Zelmac has been taken off the market. I have had IBS for approx 9 years and beleive me I have tried EVERY natural & prescriped medication. Zelmac was the ONLY thing that worked for me. Since been off Zelmac, my life has been extremely depressing. I am in constant pain, to affraid to eat anything because of pain that it will cause, my work if suffering as I have exceeded my sick days and now do not get paid if I don't work. This was the only medication that worked for me and many others. I ask you to put yourselves in our shoes. You have the power to bring back our quality of life! Don't prolong your decision, PLEASE... put us all out of our discomfort and put the normal back into our lifes... Make Zelamc available to us NOW!!!!!!!!!

I WANT MY ZELNORM BACK!!!!

I was diagnosed with IBS about two years ago. It was bad I had to read my little daughter’s book in the bathroom and send her alone to bed, because I used to get very sick in the night and sometimes I did not have enough time to put her in bed. I could not accept invitations to picnics or bar-b-q's because I was afraid to have an attack and my husband started filling neglected because instead of going to bed I will need to be in the restroom most of the night. My work was affected by several disappearances because I had problems after lunch.

Zelnorm gave me a sense of control over my life. I was not cure, but I was no longer afraid of going shopping and eating an ice cream with my little girl. I had the opportunity of a normal life. Since it was put out of the market, I can see the dark future that I believed was no more.

Please, complain to your doctor. The FDA is doing this to save some lives, but it is condemning many to an awful fate without this life changing medication.

Zelnorm is the only drug that has worked to restore my life closer to a normal one. I have sought long and hard for something like this and it has worked. I would like to do everything possible to get access to this drug even on a special case study basis.

I took Zelnorm for a year and a half and it changed my life. Since it was pulled, I've been in bad shape. Amitiza makes me extremely nauseous without providing any relief, and Reglan just makes things worse (my problem is in my intestinal tract, why would I want a drug that only pushes food into my GI tract even faster?!). Senna root capsules and tea do help with the constipation, although not always the bloating and never with the pain/discomfort. And at least for me, senna results are predictable.

There is another drug in clinical trials for those of us who suffer with IBS-C and have no alternative to Zelnorm. The drug is called Renzapride and, like Zelnorm, is a 5HT-3 agonist (mimics serotonin in the gut, like Zelnorm did). But it is also a 5HT-4 antagonist which puts it in a different chemical class and may be responsible for its much better safety profile than Zelnorm. I work in the clinical drug trial industry and have spoken to several investigative sites that are participating in the Renzapride studies and they all say that their study patients are extremely satisfied with Renzapride and are experiencing almost no adverse effects.

I have screened into the Renzapride trial as a patient and hope to randomize onto the drug in June. I am hoping -- praying -- that it's as good as the doctors and nurses have reported to me. Until and unless Zelnorm comes back, it's pretty much the only hope I have.

I was diagnosted with IBS a year ago and my Dr. put me on Zelnorm. The was the wonder drug. I felt wonderful and even lost weight. When I found out that they took it off the market I was very upset. We should have the choice to either take it or not. Not everyone's body is the same. I had no side effects from Zelnorm. Now I am on Amitiza. This is my third week on it and now it is starting to not work. I am going to contact these people and at least voice my opinion.

I am a physician and have a wife who has IBS. For many years my wife would suffer with indescribable abdominal symptoms. My wife would make a twisting motion with her fists mimicking the feeling in her abdomen. Finally, Zelnorm was prescribed for her. What a relief to my wife and me. Now we are both miserable again. Please bring us back to normal by bringing Zelnorm back.

I have been fighting with doctors for several years to get help with my chronic constipation, but all I got was regular bulk laxitives that made me bloat and feel terrible. One doctor; a supposed specialist, told me to drink 8-10 gallons of water a day!

Recently, I was hospitalized with a bleeding ulcer and argued until the doctor gave me a prescription for zelnorm and from that day, my health began to improve! Now, they have taken zelnorm off the market and my body/health is reverting to the point where I am having difficulty eating right and working at the high level that I'm required to do.

Taking this medication off the market is almost evil... And I truly believe it may be rooted in financial losses to the doctors and hospitals that treat people who suffer with chronic IBS and constipation.

ZELNORM is the best thing they have for us at this time... Put it back on the market now!!!

This is the only drug that has helped my son. Now that he can't get it, he is not sure he can continue in grad school. He is miserable with out it. He says the statistics do not pan out as far as he is concerned, but I'll send this page to him an let him write in his own comments. It is very hard to watch your own child suffer when this drug was so helpful to him. Please find a way, at least on an individual basis, to put this drug back out on the market. And Please hurry!!!!!

I'm still a bit worried by the comments saying things like "Please put Zelnorm back on the market" and "Please reconsider your decision" - this blog won't (unfortunately) be read by anyone in the FDA who has the power to bring Zelnorm back.

If you want to register your protest then please make sure you contact the FDA directly at the adddress given in my original entry. That's the only way to get our voices heard!

Has anyone tried Nulev? I have been taking Zelnorm as well and I am back to all of my symptoms. I have tried Miralax, Bentyl and laxatives. I have IBS with constipation and Zelnorm is the only thing that helped. I would be willing to buy it out of the country if I could find it. Has anyone had any luck with finding it elsewhere?

I suffer badly with IBS. In fact when my doctor prescribed Zelnorm and it worked, I thanked him a lot telling him it was a GODSEND. Now I am depressed, Amitiza doesn't work and I feel like dying! I want ZELNORM back !!! Why can't we have it? The studies are findings about cardiac problems are obviously for those with preexisting heart conditions and the number is so small!!!! BRING BACK ZELNORM.

Zelnorm wasn't just for IBS. My daughter suffered for over 20 years with chronic vomiting from "gastroparesis" (slow emptying stomach), and nothing ever helped but Zelnorm. Now she's puking her guts out again. Thanks to the FDA. If anyone knows where in the world I can get this drug, please let me know.

For those of you who can't live without Zelnorm, like myself... You can get the product without an RX just about anywhere but the US. You need an RX to get it in Canada. You can get 100 pills in Mexico for about 80 US dollars. There is even a pharmacy in the airport in Mexico City. In Sao Paulo, Brasil a package of 30 pills was 50 US dollars. In Zurich, Switzerland a box of 100 pills is 120 US dollars. Frankfurt, Germany you can get 100 pills for about 100 dollars. Not covered by your insurance but if you can't live without it. The US is the only country still living in the dark ages.

If you go to the FDA's website, you can email them re Zelnorm. They sent me a reply with information on how my doctor can get access to this drug, while it is being evaluated again.

I cried for days when Zelnorm was taken off the market. Zelnorm changed my life. My doctor put me on Amitiza and as much as I want to take the drug the chest pains and battle I had to endure just to breathe on it was too dangerous and I had to be taken off the drug.

My father died today of colon cancer. He hated to see that I suffer from the same abdominal pains that he did. His wish was that I found help. I logged online tonight hoping the FDA put it on the market for patients in need but it doesn't appear to be the case.

God I hope they do something for us soon...

I'd like to know if anyone is interested in mobilizing a protest in front of the FDA head- quarters in person to lobby in favor of Zelnorm.
Nothing quite gets the job done like an angry mob!! We can picket every day until they rescind the ban. I think it is irresponsible that they have removed the drug after using subjects with known prior heart conditions to gather data. A warning label, waiver, and or cardiovascular physical would be sufficient to prescribe to those who need zelnorm.

Well... not going to let some dopey bureaucrats at the FDA stop me from living a normal life! After years of being miserable due to constipation and bloating (affecting my social & sex life, and even a correlation to cause me backaches), Zelnorm was a blessing and a savior. I felt like a normal human being again, and not a human septic tank. It completely changed my life… so much for the better! I am a 44-year old man in great shape and healthy. Just had EKG for basic health exam, and I have no heart issues – so the logic would be for the FDA to recommend to doctors not to give prescriptions to those with those health issues. And let the rest of us choose between guaranteed colon cancer, and a very small probability for us non-heart issue people getting a heart attack.

Zelnorn is basically Tegaserod. I found a website in England that sells generic Zelnorm -- Tegaserod, but without the “brand-name” Zelnorm. No prescription needed to purchase. But obviously will have to pay out of your own pocket. To me, worth every penny and then some.

And for the record, I do NOT eat any red meats (for many years), as it is the hardest thing for the body to digest… as well as any types of white breads. Rather I stick with turkey, or chicken, or fish and have whole grain breads when eating any carbs. I also try to eat healthy, and workout a few times a week. Actually… before Zelnorm & Colon Cleanse, there were days I’d feel too bloated to work out. I now work out more, as I don’t have those issues. But even eating well and working out, I’d still have constipation issues. So the one/two combo punch of Zelnorm & the Colon Cleanse program I created for myself… works great! I advocate to you try as well, and hopefully have same success.

Again, no doctor would ever give you this sort of advice. Try it if you like? But at least you now know where to get generic Zelnorm until the FDA resolves this issue, and we can get brand name back in the States.

Good luck.

NYC, I would be very careful with buying "generic" Zelnorm from that site - Zelnorm in any shape or form has never been available in the UK, so they are obviously sourcing the pills from somewhere else. There have been a number of people who have tried something labelled as a "generic" Zelnorm only to find it had completely different effects on them.

Please do be careful with buying drugs over the internet - there are a lot of dodgy websites out there selling all kinds of stuff, and you have no way of knowing whether you will actually get Zelnorm or something else entirely. At best it's a sugar pill, at worst...who knows.

I really would encourage anyone in the US to try going through the Emergency Program to try to get Zelnorm that way, or trying some of the Zelnorm alternatives like Amitiza or Miralax. At least that way you still have a doctor overseeing your treatment and an accurate medical record - and you know exactly what you are putting into your body.

For all the IBS sufferers who are missing Zelnorm, I'm sorry for the agony you're going through. I've had IBS for many years but was only diagnosed 7 years ago because I was too embarrassed to ask for help. I am one of the unfortunate individuals to have suffered a heart attack at age 36 while on Zelnorm with no pre-exisiting risk factors to justify the attack. I have also found one woman who had a stroke and another who died while on Zelnorm, and am waiting for final confirmation of two others that are 30-something and died of heart attack.

For this reason, if Zelnorm is re-introduced, I believe it should be highly controlled and monitored. In spite of the fact that I had a heart attack, I am not against Zelnorm being available to a select few on conditions. First, since the public was not warned about the possible cardiac risk, we should be offered settlements. Secondly, the individuals requesting Zelnorm should have to sign away their lives, and any right to sue the sponsoring company, and be very well informed of any and all risks and symptoms of serious events that could possibly happen on the drug.

On that note, I hope that Zelnorm becomes available to those of you who are desperately missing the drug after the company takes responsibility for harm caused without properly informing patients. As for me, I have found that 3 tbsp. of ground flax in cereal each morning, and a glass of red wine every evening, keeps my IBS completely at bay. I discovered this when Cardiac Rehab encouraged both for heart health.

Cheerio

I too have suffered for many years and when two years ago my doctor gave me this miracle drug, I felt like my life was normal for once in my life. Now that's its off the market, I have tried other prescription and non-prespriction medicine, but nothing works as good as Zelnorm. I too would buy it off the streets if someone can tell me where I can get. PLEASE!! is Norvatis doing anything to getting this medicine back on the market???? I don't know what else to do. This has become a complete nightmare and my life is miserable with out it.

I am desperate for Zelnorm .
I use Zelnorm to assist my peristaltic movement as i don't have one, now i am bloated and my stomach is distended. i look nine months pregnant. So i ordered some from Aclepsa.com in the States. Are they going to be dodgy? Have you heard of this company

Canada has recalled Zelnorm as well but you can purchase it from Mexico online at Medsmex. Instead of Zelnorm, they call it Zelmac. The price is USD$70.88

Just a word of warning that I've heard a number of reports of people ordering Zelnorm/Zelmac from medsmex.com and then being the victims of credit card fraud. These two events may not be connected, but you never know who you are dealing with if you order prescription drugs from overseas. Buyer beware!

Zelonorm was the best thing that ever came along for me PLEASE bring it back !!!!!! I have tried soo many thing through out the years and am once again having problems now that I dont have the Zelnorm. I think it should be left up to each individual and their doctor not to them!

Zelnorm NEEDS to be back on the market. I have suffered for years with IBS and I have tried numerous remedies and medications that don't work. Suffering with an intestinal disorder, you do what you have to. I finally found Zelnorm about 2 years ago and I finally started to feel like a normal person. Literally my whole life was different. Since Zelnorm has been taken off the market, I'm already and suffering with daily bouts of IBS symptoms which are both painful and at times embarrassing. Please let the individual make the choice on whether to take the drug or not, and not someone else make that choice for us because they don’t know. If I felt the drug was causing me other problems, I would not take it. It really made a big difference in my life, to lead a normal life, and now that's been taken away from me as well as others. Both my personal/professional life at this time is not the same.

Just stumbled across this site while hoping to find out if any drug has been developed to replace Zelnorm. I have a neurologic disorder which affects my GI system in numerous ways. Motility is adversely effected and portions of my colon have become spastic. In addition, I have difficulty swallowing. Zelnorm reduces each symptom significantly. I am doing the high fiber diet thing with Miralax (Amitiza was intolerable!) and Konsyl. But this method works
sporadically with complications. And there is no medicine I know of which regulates the upper GI system/esophagus to help me swallow normally. I guess the risks of lawsuits made recall necessary; but it is hard to believe there is not a way to provide Zelnorm to those who benefit from it. Just thought I'd add my story to the pile.
--- Joe ---

please i need agood subtitute
please help me
when i know about zelmac it was taken of the market and i really need substitute
send me back to shark5303@yahoo.com