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momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 4/22/2008 9:02 PM (GMT -6)   
A few months ago I had posted some info about a UC patient advisory board meeting that myself and several others from this board had attended.  As a reminder it was put on by Shire, the company that makes Lialda.  They were (and continue to be) looking for patients input on how to further UC awareness and helping patients get the support they need from a variety of modalities.  I have been contacted by the company asking for help in getting more patients involved in their studies, and was wondering if one of the moderators would be willing to talk to him.  I can provide a phone number and/or email address if you are willing.  If not I understand.  Just thought I'd throw it out there since I think what they are doing is really great :)
Leslie, 30~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
multi-vitamin, calcium


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/22/2008 10:01 PM (GMT -6)   
Can you find out for me if they are interested in talking with crohns patients too? If so please let me know. I take Pentasa which is made by Shire and love talking about this disease...
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/23/2008 4:59 AM (GMT -6)   
Sure, I will do it - send me their email addy. Mine is under my screen ID. Btw, I think what you did took a special courage. Thanks for taking your time to talk to the company. :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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