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!
