HealingWell
Search Close Search
☰

Zelnorm has been withdrawn

Support Forums
>
Irritable Bowel Syndrome
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/12/2007 6:24 PM (GMT 0)
Gosh, I didn't know they were so cheap. I know that's a lot of money to spend on a procedure you really don't want to do, but it's better than some of the tests they put you through that cost thousands. Just about any sort of scan, especially nuclear ones, is going to set you WAY back.
Posted 5/5/2007 4:32 PM (GMT 0)
hi, that is just my copay (it is $100) and my insurance pays the rest. Out of pocket...who knows what I would pay. I am sorry they took zelnorm off the market. It was working well for me. Miralax is not as good. Any suggestions on what I can take in place of zelnorm?
Posted 5/7/2007 12:35 PM (GMT 0)
Hi Joan,

You may want to ask your doc about Amitiza and maybe you can do both Amitiza and Miralax (with your doc's approval of course). Amitiza is relatively a new drug on the market so not too many have heard of it. Zelnorm did nothing for me so now I'm on Miralax, fiber supplements and a diet change and I am so much better now. Everyone is different, you just have to unfortunately do trial and error.

Good luck and Take Care
Posted 5/7/2007 12:40 PM (GMT 0)
thanks, thing have gotten worse. I am have embarrassing moments with the Miralax...fecal incontinence. Will call the doc and see what happens.
Posted 5/11/2007 10:47 PM (GMT 0)
Miralax is worse than nothing.  Tried to lower dosage, talking to nurse, that was her suggestion.  It did not help.  Will see doc on the 22nd of this month.  It is all a drag and wish I could take zelnorm again.
Posted 5/11/2007 11:01 PM (GMT 0)
Goes to show, things that work for some don't always work for others. I hope you will find something that helps you. Good luck and take care
Posted 5/20/2007 2:42 PM (GMT 0)
I have been screwed up without zelnorm.  The PA suggested I take nothing.  I just can't seem to get it to be right.  It is painful, a lot of cramping.  I am so unhappy.

Posted 5/21/2007 1:26 AM (GMT 0)
Please, everyone reading this contact the FDA to get Zelnorm back.
Surgery is not an option for everyone. Some people, like me are deteriorating. I've been to the Mayo clinic and there is nothing they can do for me. There is no alternative medication. I am now on 31 medications instead of zelnorm. Many of these have a 2-3 month time limit for safety. I am already having, thyroid, liver, lung, and of course gut problems. I am fainting and now I have severe chest cramping. Isn't this interesting - I have chest cramps when I am not on Zelnorm! I have missed two periods and am malnourished. I need Zelnorm to live.
It is worth the risk because I am not doing well and may have to live in the hospital. Does anyone know how dangerous this is for a person with a severely compromised immune system. My doctors are concerned but can do nothing. I am so scared. Feeding tubes are very dangerous for a person like me. I've lost 24 pounds since Zelnorm was removed.
Posted 5/21/2007 1:40 AM (GMT 0)
Gracies mom, this is hungry - I also have gastroperesis. It is horrible. I was fine on Zelnorm though. I just thought I'd share with you what I am doing to cope. I was also an athlete for most of my life and had a very healthy eating style so I can relate to her frustration.
I am on an all liquid diet (vegetable juicing) with yogurt. I know it isn't nutritious but at least she won't be in pain. The enemas are easier this way.
I use daily enemas. Not always full enemas; only partial so it isn't too painful. I also take as many vitamins as I can. My doctors told me people with these issues people have absorbtion problems so it is important to stock up. It can only get worse if you don't . I did a lot of accupuncture, but it didn't work for me. Hopefully she will have more success.
Many insurance companies pay for osteopaths or accupuncture in a pain clinic. Osteopathic work ( hands on only) has been helpful for the nausea. I do this and it helps a little.
Posted 5/21/2007 2:57 AM (GMT 0)
Hungry, did you have all these problems before you went on Zelnorm or is it worse since going off the Zelnorm? Does Reglan help. i know there are some meds that increase motility that cannot be used with gastroparesis. I have used Motilium but I think it says not to use if you have gastroparesis. I can't imagine taking that many pills. Have you tried just plain ginger capsules for nausea. They usually work very well.
Posted 5/21/2007 6:50 PM (GMT 0)
Dear hungry and all...I did contact the FDA. They said there is IND use for zelnorm but your doctor has to fill out forms and contact the pharmaceutical company. I don't know what all is involved but it might be worth a shot to call the company, Novartis. Their number is 1-888-NOWNOVA. They should advise you how to proceed.
Posted 5/21/2007 9:49 PM (GMT 0)
Hungry, is it possible to do a bowel resection on you? Surgery on the bowels is just about the last place you want to have surgery, but maybe if you had less bowels, you'd get your stools through a little bit quicker so they wouldn't be so hard to pass. Sounds like it won't make your malabsorption worse at any rate.
Posted 5/23/2007 1:44 AM (GMT 0)
I wish I could have surgery. All of the GI doctors I have seen are concerned about making things worse. I have had a lot of nerve damage from previous surgeries. This is how it probably started in the first place. I also have severely suppressed immune system so nobody wants to take a chance with me. I will just have to hope the IND goes through. Thank you so much for your idea though.
✚ New Topic ✚ Reply
12