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[IP] Re: Propulsid Availability

I was on Propulsid for several years before it was FDA approved.  My doctor
connected me with a pharmacy in Canada, but the government cracked down on
that saying you had to be the patient of a  Canadian licensed doctor.  I was
then put on the study and received it from Jannsen until it was FDA

After it's withdrawal, my endo said she was a designated study site to
dispense it under the compassionate use guidelines.  "Too much paperwork",
so she withdrew and referred me to a GI doc--"too much paperwork", he sent
me to a GI doc he *knew* was doing it: "TOO MUCH PAPERWORK".  He was the
last of three doctors in the Rocky Mountain west who was going to dispense
it, but Jannsen made it impossible.

Also, the 5 doctors I've talked to about its withdrawal say it is a good
drug, but was over prescribed to anyone who had heartburn; it was marketed
to a lot of people who never should have been on it, then the deaths
occurred.  Perhaps if only those who really needed it were on it, it would
still be available (like it was for 6+ years before the marketing blitz).

For anyone who has had very severe gastroparesis, sometimes death does seem
like a better alternative.

> Propulcid is available for compassionate use under the Janssen
> Pharamaceutical site.

> PLEASE, PLEASE, be careful with Propulsid.  The reason
> it is not prescribed anymore is because it can cause
> lethal arrythmias of the heart!!!!  If your doctor
> won't prescribe it, he has a very good reason.  I
> would rather have gastroparesis than be dead!!
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