First of all, I just want to remind you that if you want to make a complaint about the withdrawal of Zelnorm you should write to the FDA (addresses are below in the entry titled "Fight for Your Right to Zelnorm"). I've had quite a few comments on that entry saying things like "Please reconsider" and "Please bring Zelnorm" back, which is fine if you're just expecting me to read them, but not fine if you're thinking that the FDA will hear these pleas. So make your voice heard - write to the FDA today!
For those of you who are really struggling without Zelnorm, it may be worth asking your doctor about the so-called "Emergency" program, where doctors in the US can request the use of medications which have been recalled (or which are still going through clinical trials) if they believe it is in the best interests of the patients.
I'm afraid I really don't know how restrictive this program is, and how many of these requests are accepted. However, if Zelnorm was the right drug for you, and you are aware of the possible side effects, this might be a route to consider.
Carolyn is an IBS sufferer who is currently trying to get hold of Zelnorm through the Emergency program, and this is what she says:
"So here is the deal with the Zelnorm. I just heard back from my GI guy. The physician has to call the FDA. Then the office has to fill out some papers to get it approved by the FDA, and you can then get it on a month-to-month basis, but you have to have the physician apply for it each month.
Fortunately, my GI guy is willing to do this. I don't know how long it takes for this to actually get to the patient and I assume you have to pay out of pocket."
I've fired off an email to the PR people at Novartis to see if they can verify the phone number for the FDA that your doctor would need - I believe it is this one:
FDA: 1-301-827-4570 or toll free at 1-888-463-6332.
Please remember that this number is for your doctor to call, and of course you'll need your doc's approval to get the medicine anyway as it is still prescription-only. If anyone does succeed in getting Zelnorm under this program please do leave a comment to let us know, or email me direct. Good luck!
Thanks for the info. I too was on Zelnorm and had a reasonable amount of success. Also currently in the "rule-out" stage so now trying other medications. I am working with a GI doc and plan to ask for his input to get the Zelnorm thru your suggestions. Thanks
I have ibs since 1998, i am tired of taking pills and i have also noticed i only get attacks when i am ovulating and i am trying to have a baby can u tell me if digestrol really works
Hi Iris - have a look here for my views on Digestrol: http://www.ibstales.com/blog/digestrol.html
I am a 42-year-old woman who has suffered from IBS-C for over 20 years. I have tried everything, I do mean everything, and nothing worked until Zelnorm. It really frustrates me the casual attitude that doctors and health care professionals seem to have regarding this drug. I known they did not take it off the market, but I also know that their input on how effective it was for their patients would carry some weight with the FDA special approval.
I am sitting here crying as I write this, because I am so miserable with constipation that life does not seem worth living any more. I am just so tired.
I wish I knew what to do.
I'm also 42 years old, female, with IBS-C problems for about 20 years now. Zelnorm was the closest thing to a "magic bullet" that I have ever found. I have felt miserable since running out of Zelnorm, and nothing else seems to work without kicking up the pain again. I am planning to pursue further dialog with my doctor/GI guy. Best wishes to all. Together we stand tall. Please speak up and voice your concerns to the FDA and other appropriate representatives.
I also have had IBS-C for 20 yrs and the only thing that has ever worked is Zelnorm. My doctor is helping me with the FDA process but it is taking forever. What keeps me going is the hope that I might get the medicine back. Life is not worth living if you are always in excruciating pain. Besides, in any given group of about 10,000 people I can bet you will get 13 people who have a heart attack.
Hi,
I found this forum because I was looking for Zelmac/Zelnorm after withdrawn and I'm really desperate.
I'm sorry for my english but I'm writing from Italy (I think you are not European, you talk about Zelnorm, which is the name of Zelmac in USA).
I'm trying to have Zelmac from medsmex.com but I'm having some problem with credit card.
Has anyone already received Zelmac from medsmex?
Did you encounter problem?
I hope someone could help me with some information.
I sent an email to Novartis asking where it's still possible to find Zelmac.
In someone's interested in this they told me that at the moment it's probably allowed in Brazil or South Asia.
Thank you
Barbara
Hi Barbara - several people have ordered Zelnorm/Zelmac from Medsmex.
Several months ago, my doc wrote the letter required to help get me back on Zelnorm. We have heard nothing. My doc said he was told that they had MANY people requesting to get back on so it would take them a while as the FDA also has to look at the request form. This is madness....I would RATHER take a chance at heart failure than live this way. It should be MY choice anyway. I would sign a waiver. I have no colon so other drugs don't work for me. This is madness. Laura
This product has been a life saver for me, At one time I got it through freedom-pharmacy, but, I just tried to order it and I can't find it anymore. My pills was coming from the Figi Islands. I love it. It is the only one that truly helps me. I will ask my doctor about it when I see him in December. Thank you so much for the info.
Cheryl
Hi,
I have contacted my GI doctor regarding the IND Program. He was very hesitant on doing it because it is very time consuming - patients have to do a lot of tests prior to the program and then come in monthly for check ups. He said that most doctors probably won't do it because they do not have enough resources to have patients come in monthly! Anyway, after some arguing he has given me the paperwork; basically if you qualify (see Zelnorm website for criteria) you have to get a Blood Cholesterol test and a electrocardiogram before enrolling in the program.
My question to this blog: Has anyone else gotten the paperwork? I called my insurance to see if they would cover it and they need procedure codes for the blood test and ECG - does anyone have these? My GI office is being distant about providing these.
Thanks,
Lina
I have suffered for over a year now without Zelnorm. I deal with severe chronic abdominal pain everyday. I have tried everything and nothing works like Zelnorm. I developed IBS in 2004 and after much testing was put on Zelnorm...which was a miracle drug. It took away all of my pain and constipation. Now that I have been forced to do without it I live on pain killers that really don't work well. I am a single mother of 2 small children and feel hopeless. If anyone can help, please let me know!!