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.

Views: 82

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 :)
-A

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..

RSS

Advertisement



REsources

From the Diabetes Hands Foundation blog...

Meet The 2014 Big Blue Test Grant Recipients

  This year Diabetes Hands Foundation has pledged US$35,000 in Big Blue Test grants, continuing its support for programs aimed at providing lifesaving supplies, medical tests, treatment, and patient education to people living in need who have or at risk Read on! →

Kim Vlasnik: The Patient Voice

  Kim Vlasnik, you NAILED it! In this video, Kim Vlasnik takes our breath away as she describes what its like to be a person with diabetes. Fortunately, Stanford’s Medicine-X Conference gives ePatients, like Kim, a chance to speak since we carry the Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)

DHF VOLUNTEERS


Lead Administrator

Brian (bsc) (has type 1)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service