Zelnorm has been withdrawn

You're kidding!!!  I'm on zelnorm!  Do doctors know this??

*sigh* I'm so tired of these drug recalls due to "increased risk of heart attack," when really it has more to do with lifestyle than the drug itself. This happened with celebrex and vioxx, and a couple others ... and i'm sure there will be like a hundred thousand unnecessary lawsuits that come out of it, too.

(note that this is coming from a pharmacist's daughter, and a drug rep's granddaughter, and my views might be a tad skewed)

Yeah, I like that "seek alternative treatment". Don't those goobers know that this was the last hope for most people that are on it?

They also did the same thing with Seldane which was a prescription allergy medicine. My mother took it for years without problems and never has found anything that works quite as well for her, and certianly nothing else that works as fast. And she has very severe allergies.

So, the FDA decides that it's better to die of constipation than from a heart attack? I'm glad that they do these tests so you know your risks, but why pull the product? Why not put severe warnings on the drug that people with any form of heart problem can't take it and that everyone else must be monitored regularly for blood pressure, chest pains, etc. and then let people and their doctors decide if it's worth the risk. Having to have surgery o yoru colon due to constipation surely has a higher risk of death and complications than Zelnorm.

You know, they don't seem to care if cholesterol meds damage your liver or if bariatric bypass surgery has a 1-in-50 death rate. I guess consitpation just isn't the "epidemic" of the day and doesn't have enough lobbying power to stay on the market for people who really do need it.

It still seems unfair that they have left people with severe constipation in the lurch. At least when they took the anti-D medicine off the market, they did allow a few doctors to prescribe it to a few really severe individuals.

And doesn't the FDA panel include people that are not doctors? Are any of them even doctors? I don't know; sometimes I think the FDA treats us all--including doctors--as if we're a bunch of idiots. And Lord knows they succumb to political pressure, including lobbying groups.

Of course, like any governmental agency, there's a lot of room for improvement. They do come in handy when it comes to recalling tainted food. They just seem to be more spotty when it comes to allowing some medicines, but not others.

It is very possible that after some testing that it may come back for people that have no other choice. That is what I heard. It made me so dizzy I could not get out of bed without falling into the wall and that was half of a 3mg. I hope you all find something that will help. I know constipation is bad (I have IBS-C) but I don't think it is as bad as something that may be damaging your heart that can't be fixed.

We had a guy on here about a month ago who is part Chinese and his dad dug up an old Chinese remedy for him for his D, I think it was. It involved breathing in the vapors of certain plants, and I think drinking something too. I seem to recall that he said that it wasn't that expensive and that you should be able to find it in the US if you go to a big city and go to the chinese herbalist. He was raised Western, and thought it sounded crazy, that breathing vapors would help, but he was out of options, he tried it, and it worked. Apparently it's been prescribed in China for centuries; nothing stays around that long if it doesn't work, I say. He did some more research and found that a few doctors have discovered this treatment as well and have some theories as to why it may work.

Anyways, you might want to go back through the postings from a month or so ago and see if you can find it and shoot him an e-mail about what his Dad thinks about treating C. There might be something that you can afford to try. Doesn't seem like you're left with any alternatives anyways.

http://www.msnbc.msn.com/id/17873835/wid/11915773/

An article on Zelnorm. Gracie's Mom, note how few people actually had a problem with the drug. Obviously, though, because of the high doses your daughter was taking, and prior heart problems, she is much more likely to be one of the 13 people out of 11,614 who developed a problem. I hope they can find something else to get her moving, but it sounds like she needs such high doses of anything she takes to get her bowels to work, that she's likely to encounter severe side affects regardless.

But everyone else take heart that they might release it on a limited basis, so if you absolutely cannot function without it, and you don't have any heart problems, have your doctor campaign to have you made one of the exceptions. If my math is right, a person on Zelnorm has a .111% chance of developing serious heart-related side effects. So, right at one-tenth of one percent of a chance. The placebo group had a .014% chance of developing serious heart-related problems. While obviously Zelnorm increases your risk, all I can say is, good-grief. It increases your chances of having heart problems by just under one-tenth of one percent--so, 1 in a 1,000, I think. Obviously someone thinks that slight increase is more important than the permanent damage that chronic constipation can cause to your intestines. Of course, I guess they're always banking that you can have your intestines removed and go to a colostomy if your constipation gets too bad. What a way to live. Sometimes I think our society and medical community gets so obessesed with living forever that we forget to live well. Of course, deciding to risk your life in order to live it well right now is a different proposition for someone Canyon's age than for someone making that decision for a teen child. We all just have to do what we feel is right for us.

Anyways, just thought I'd pass that along; doesn't look like anyone much should really be worried about what their Zelnorm has done to them (provided my math's right; I admit, I'm not a math whiz, even with a calculator).

Keri, all I did was make your link linkable. -- Lil

Post Edited By Moderator (7Lil) : 4/5/2007 9:18:34 AM (GMT-6)

Hi Joan,

I use Miralax and have been for a few years now and it does work for me. I hope you find some relief from it.

Take Care

Joan M, what do you mean that your "purge wasn't good enough for a colonoscopy"?  Are you having trouble clearing yourself out?  The stuff that people use around here for the colonoscopy prep is called "halfLytely."  But I hadn't gone bowel in a month so I had to take 4 dulcolax and some miralax for about 4 whole days, and then I used the halfLytely.  What a chore it was for me to get out some bowel.  Luckily, I am not on zelnorm, miralax, or laxatives now and have been going fine.  I hope it lasts!

I had a colonoscopy that the doc has to "redo" because I wasn't empty enough. I too was on Zelnorm, but it wasn't helping me, so I don't feel a big loss with the recall, although I feel tremendously for those of you who had found some relief. Unfortunately, I have not found my relief as of yet. The gastro found internal hemorrhoids, and polyps in the colon that he could view. I have some serious pain in the lower left quadrant, left hip and left side of my back. Oh yeah, and he said my colon is about nine feet long, and the normal colon is only about five feet. I wish us all well.

Joan, maybe you should consider getting yourself some Phosphosoda. It's over the counter and you can buy it at most drug stores. Just a thought... it's what I used for my scope and it worked great.

Phosphasoda worked very well for me.  very quickly.