Zelnorm Recall Will Affect Thousands

I'm with you, Nancy. Zelnorm gave me back my life. I don't know what I am going to do without it. Nothing else was working. I am considering going to another country and seeing a doctor there.

Kristen.. Is Experience a prescription drug?

I understand Zelnorm was only for women. Don't understand any doctor giving it to men.

steve wrote:

I was on Zelnorm for 2 years and my IBS-C was completely under control; though I did stick to a low fiber diet. I urge all people who have no other options to write letters to their doctors, the FDA and Novartus to have this medication approved for those who have no other options. Certainly this medication should be more carefully prescribed and more carefully monitored - maybe like cancer treatments. It should not however be discontinued for those who really need it. There is a difference between those who have discomfort and those who live in horrible pain. I cry, and sweat from the pain. This is a very serious condition that needs some kind of treatment. It should not be ignored. I haven't been very vocal about my situation because it is embarrassing. I hope it is not too late.
Do people really understand the difference between IBS and IBS-C? I don't think so considering I was twice misdiagnosed and told to eat a high fiber diet.
I was also recently given amitiza and it doesn't work for me. My doctor is giving this to all of her patients who no longer have Zelnorm. I now have horrible headaches ...still no BM. I now have horrible chest pains too. This is from constipation, not Zelnorm.

I agree with those who have said that the powers that be have no right to remove a medication with has helped thousands, myself included. I have tried everything for my IB and Zelnorm (Zelmac in Australia) is the only thing that worked. I have been on it for 4yrs with no problems. Within one week of going off it I am back to crippling pain, and constipation.

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Zelnorm is dangerous.

I'm 28 yrs. old diagnosed with gastroparesis. I've been taking Zelnorm for about four months and it worked great for me. In fact, it did wonders for me. When I found out that it got recalled I was very dissappointed. I had no problems and no side effects. And I have always been very sensitive to medication.

Having spent 5 years in a lazyboy chair,suffering from severe effects of M.S.
Ihad a colon 4-5 times larger than a normal woman,I was dying from toxic poisioning...and no bladder function.Zelnorm saved my colon and my life, I also had a urostomy. I was on Zelnorm for 2 1/2 years. I don't know what to do....I can't go back to total disability.Faith is the only hope I feel I have. my life is important too,ask my sonsand my husband.
Nova Scotia, Canada

When did this person have a stoke that was due to Zelnorm? Because I am a paralegic Woman who was taking Zelnorm due to my bowels and nobody never told me that they have taken Zelnorm off the market.

Kathi wrote:

I have been taking Zelnorm for 2 years,I was very pleased with the results of it. I often called Zelnorm the miracle medicine, I had tried everything and nothing worked until I took the Zelnorm.I am concerned with the recall but also upset that I will no longer be able to take it

I need zelnorm back. I have lost 18 pounds and keep going to the hospital to live. I can't eat. I have called the FDA everyday and they don't care if people get sick by not taking zelnorm. I don't want to be hooked up to more tubes. Any ideas anyone. I am already on 17 new medications and they aren't working.

I have constipation with abdominal pain for all of my life, with memories of stool softener suppositories starting at the age of 6. sometimes I wouldn't have a bowel movement for up to 6 days or so. I went to a gastro specialist and after a clean colonoscopy, he suggested Zelnorm. The first day I had explosive diarrhea. Within the next few days I began to feel dizzy and anxoius, and an ache in my lower back/kidney area. I also felt like my heart fluttered. By the third and fourth day I was starting to feel fatigue and the ache in my lower back had moved up my back. The fatigue and body aches grew so severe that I thought I had the flu and went off the medication and went to my regular Dr. Not finding any problems at the Dr., I started to feel better after a few days. Once back on track, I decided to try use the medication again. Had the same result but wasn't sure if it was me or the medicine and attempted a third week.
On my next meeting with the specialist, I told him of the symptoms that I now believed was from the medication. He smirked at me and stated that Zelnorm doesn't do that. I did note that none of my symptoms were listed as the side effects of the medication.
Either way the side effects were so bad that, I told my specialist that I could live with the constipation.
After discussing my symptoms with other people, I'm finding that I'm not the only one who has had these reactions. Only today did I find out about the recall from a nurse.

We do not have to just accept that this important medication is gone. The FDA is considering a limited return of the drug if a group of people are identified where the benefits outweight the costs. I am one of those people without this medication I have no quality of life and I know there are many others out there in the same situation. We need to organize and present our stories to the FDA they cannot ignore this problem forever. We can get this medication back if we fight for it. Our stories speak for themselves. There is going to be a public advisory committee meeting on this issue. I would be willing to present the letters from people explaining the importance for this medication at this committee. Anyone who would like to contribute a letter explaining there situation to be presented at the committee to get a limited return of zelnorm pease contact me at angelad621@yahoo.com. The more people who make their situation known the better chance we have.

Today, I started a blog. People who want to get involved in the fight to bring Zelnorm back should visit the site, http://bringzelnormback.blogspot.com/ . I will contact the FDA on Monday to get more information about the upcoming public meeting on Zelnorm. There is not much on the site now, but check back in the next few days as I get more information. Also, if you could start sendng me your stories via email, that would be great (my email is included on the website). I would be happy to present the stories to the FDA at their upcoming meeting.

I again am one of the people who am very upset about Zelnorm being taken off the shelf. I have been suffering for YEARS and then found Zelnorm. This is the ONLY medication that works for me and I already am feeling the ongoing chronic symptoms that IBS brings with no hope for relief. NOTHING else works like Zelnorm and I have NEVER had any side effects. I have been taking this medication when needed for about a year or more now and I just started to feel normal again. PLEASE, PLEASE PLEASE, PUT ZELNORM BACK ON THE SELVES. This is so unfair to the people who need this medication and have no choices. Please let the people make the decision of whether they want to take the medication or not, not other people making that decision for them.

I finally got to see my doc today after getting all of our military insurance and transition from active duty to retiree situated. Among the several issues I have, IE, chronic migraines, chronic pelvic pain (source menstrual cycle) I also have IBS-C. I ran out of Zelnorm right around the recall time, but didn't hear about it, becuase I wasn't seeing a doc yet on this side of the "pond". I started self medicating for I knew that it was the best shot I had.
It's been MISERABLE. Prior to Zelnorm the longest recorded time I went with out a BM was 9 days. I couldn't eat becuase everything was trying to push it's way out the wrong way. Nothing I tried worked. While I was at the doc today, she being only a temp stand in until I can get to the primary care manager, then to the many specilists I need to see... said, Zelnorm is THE ONLY ONE IN IT'S CLASS. SAY WHAT? Who on gods green earth thought THAT was a good idea?????????? I am not up on the whole politics of how all this medication crapole works but listen here folks! Someone some where some how needs to get their heads out of their backsides and get on the ball. THIS IS CRAZY! I happen to agree that 13 out of what seems to me a blue MILLION people is a very small percentage.
Also, if you start having side effects especially heart issues, don't you usually go straight to a typical sources?? MEDICATIONS? why why why people would you allow doctors to do test after test after test if you are on any perscriptions at ALL and not go to them FIRST to see if POSSIBLY they could be the root of all your evils? HELLO! Wake up! Use your heads! Your doctors can NOT be there for you every moment of everday. You need to PAY ATTENTION! So that the rest of us don't miss out in the end.... LIKE NOW!

PUT ZELNORM BACK ON THE MARKET SO THAT I CAN GET BACK TO A NORMAL LIFE AGAIN ... and my BM'S are NOT the topic of each and every conversation anymore!
THANK YOU!

After ten years of suffering with IBS-M I was thrilled to be free of the pain, bloating and the miseries associated with this condition. I too called Zelnorm the Miracle drug. I'm extremely upset that it's been taken off the market. Why don't they just not prescribe it to patients with fam. histories or prior histories of cardio conditions?

you need to flood the fda with emails.....i have found several names on the net to contact. just keep sending and sending info....i have suffered from gastroparesis for over 10 years now and was on cisapride when it came off the market and now they took zelnorm, everytime they do this i lose 40lbs vomit 8-20 times a day get hospitalized....and i have to loose everything i have worked for. so we all need to ban together to get it back....Its all about the quality of life verses the quantity for me!!! i could care less if i drop from a heart attack or stroke as long as i lead a good life until that day......being nauseous and vomiting everyday is not a quality life. i would rather be dead, so for those who say zelnorm is bad i would take the risk!

I'm saddend at the fact that I finally found something that helps my IBS, Now what, they tell me there is nothing else. It really worked well for me however, I'm not willing to risk the possible alternatives.

Maybe some of you who have such severe pain and cramping should have your DR.s test you for CELIAC DISEASE. Which is a condition caused by eating food containing GLUTEN. Gluten is in wheat product such as bread, pasta. oats, barley, etc. The testing is done by blood tests.

I also took Zelnorm..there is no way that I could take 1 tablet a day..let alone 2.
I got so that I quartered the tablet, then I cut the quarters in half..within a couple of hours I have relief, with no side effects..much better than waiting for hours or days for something else to take effect.