I have been using the site to learn more about diabetes to help my husband.  I am not a diabetic but I have gastroparesis.  It was diagnosed about 7-8 yrs ago.  Tests were taken to make sure I did not have diabetes and I have had the stomach emptying scan twice.  My symptoms were dry heaves every morning and severe stomach pain.  I went to a doctor at U of Penn who specializes in this disease.  He put me on Zelnorm -- a drug for irritable bowel.  It worked like a charm but it was taken off the market about four years ago due to some reported heart problems.  I tried to get FDA permission to get it anyway but was never able to achieve that because I was using it for an "off label" purpose -- too complicated even thought the doctor was a big help and filled out lots of forms.  Anyway, I had to resort to Reglan.   Fortunately I didn't have any side effects but I was very scared taking this med.  After about a year my symptoms started getting better and I weaned myself off the Reglan.  Now I control this problem with diet  It is much better although I have an occasional attack.  The doc says that sometimes it just goes away by itself.  Guess I'm lucky.

That's a long story to lead up to how we can fight the battle to get Zelnorm approved for this condition.  Or at least be able to get it special from the FDA  Whatever the problems were that caused it to be taken off the market are certainly worth the risk to have a trouble-free stomach.  It is much much safer than Reglan.  Anyway -- I don't know how to launch a campaign to do this but if anyone else has any experience I would be happy to learn what you've done.

Good luck all of you -- this is a horrible condition and I'm sure makes dealing with your diabetes that much more difficult.   I feel blessed to only have it in a minor way.

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Replies to This Discussion

Zelnorm worked for me so well, it was the only drug I have taken that worked. I've been put on a few different kinds but no luck. I cannot take Reglan, it makes me feel like a zombie :/ I'll help fight for this drug but I don't know where to start! How have you been feeling, has anything helped you lately? I'm looking for advice b/c right now I feel lost. I wish you all the best :)

ZELNORM was the best medication for my tummy I ever used...I actually felt normal...No drugged feeling...no dry mouth...and no muscle rigidity...Reglan has the worst side effects ever for me...I so wish I could have this medication back..




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