discussion group in philadelphia

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momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 11/11/2007 11:44 AM (GMT -7)   
Many of you wished us well and asked us to report back when we returned.  It was definitely an experience like none other and something I will not soon forget.  Shire, the pharma company who invited us, pulled out all the stops.  They flew us in from around the country, we stayed in a veeery nice hotel (where at the catered meals the servers wore white gloves), took us to dinner at a fabulous restaurant on a ship that is permenantly docked at Penn's Landing, paid us $250 for coming, and thanked US hundreds of times for coming as if WE were doing them a favor.
Now for the important part... we were all skeptical,I know, about what they wanted.  What they wanted was our input.  We discussed what we felt was lacking in the world of UC (physician information, public awareness) and how possibly to rectify these situations.  We discussed what type of info we would like to read about in publications on UC or in an informational seminar (either for patients and/or family members)  Also talked about was how to find support.  They were interested in finding out if we, personally, or our doctors chose the medications we are on and how we decide to try something new.  This company does make Lialda but they only talked about it for 20 minutes. And they were not trying to sell us on it at all.  They wanted to know if we thought their marketing strategies would work, what we would like to hear in an ad, where would be a good place to puts ads.  We were told that this was the first time they had ever done something like this and that they hope it is the start of something big.  They truly want to communicate with patients in order to help us better.  I thought it was funny that one thing we were asked is "How can we get people to come to these?"  They had 12 spots, but could only get 8 of us to come.  I would do it again in a minute.  I hope it really is the start of something big.  
Thanks for all the well wishes.  I think I can speak for all of us when I say we enjoyed it. 
 
oh, and Dan if you're reading this... That shirt doesn't match those pants.  hahaha...
Leslie, 30~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
multi-vitamin, calcium


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 11/11/2007 2:20 PM (GMT -7)   
I have to agree it was awesome!  They treated us like they really cared.  It was great meeting everyone and putting a face with a name. 
I would definitely go again if invited.  I can't believe I made it through the O'Hare airport! 
 
They said we would receive information as they plan these information sessions. They have chosen 10 U.S. cities, but did not share those with us as they are in the initial stages of planning. We can share that info when we receive it. 
 
 
 
Darlene
 
UC First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA,  vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Occasional  Vitamin E enema &  Rowasa enema
AloeVera juice


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 11/11/2007 3:43 PM (GMT -7)   
Thanks very much, Leslie & Darlene, for getting back to us about Philadelphia. It's good to hear that a major pharmaceutical is truly interested in UC patient contacts. If you read Trixy's recent posts about the Rowasa supply crisis, she got good results from contacting Alaven directly. Maybe there is hope after all that we can influence them to help us more-- such as by giving us the 5-ASA rectal foam that Europe & Australia already have among their treatment options. THANKS! (Glad you made it thru O'Hare o.k., Darlene.) / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/11/2007 3:47 PM (GMT -7)   
Sounds great! Thanks for updating us. I wonder if part of the reason they weren't able to get more people to go was just the nature of the beast. People with chronic illnesses may be nervous about traveling, flying, staying in a hotel, and eating out w/ strangers. Especially with UC or Crohns. So I guess if they offered this for crohns I would want to see that they had thought ahead about our needs and had us well accomodated w/ lots of menu choices and transportation that was bathroom friendly. Glad you all had fun!!
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 11/11/2007 5:12 PM (GMT -7)   
That is so awesome! I am so glad our input is so important and that it was so informational and enjoyable! Thanks for letting us know and next time, I want to go!!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and tapering by 5mg per week  which started on 9/28/07:  40, 35, 30, 25, 20, 15, 10, 5, 5 every other day, 5 every three days, done!
 


UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 11/11/2007 5:59 PM (GMT -7)   
Yes, it was a blast.  Like Leslie and Darlene said, they treated us very well.  I was impressed to say the least.  Quite surprised though that they couldn't get anybody else to go, but I guess it's because many of us on here aren't in the best of health and unable to travel.  Hopefully next time around will be a different story, since we gave them some ideas on how to get more patients when they do this again.
Anyways, from the time I got there, I felt very comfortable (aside from my monthly migraine that hit as I was flying into Philadelphia...great timing).  I've never stayed in a hotel as nice as the one they offered.  Meals were top of the line as well.  In my opinion, one of the best perks was just being able to see some of you in person.  I'd never met anybody with UC in person before, just made me realize even more than I'm not alone with this disease.  Also felt good being able to give my own input.  I went there thinking most of the time was going to be put toward their medications that they manufacture (especially Lialda), but as Leslie stated, maybe 20 minutes tops was put toward Lialda.  And it wasn't even to sell it, just get our opinions on marketing, etc.  Great group of people we met there.  I have much more faith in pharma now, they really do care about what's going on with us.  This is a great start of things to come.  And to those of you that went, it was nice meeting you all.  Be sure to keep in touch!
---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC (pancolitis)
Currently in mild flare
2 400mg Asacol 4X day
10mg Prednisone
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 11/11/2007 6:24 PM (GMT -7)   
Hi you guys. Good meeting you all too! I know Leslie! I thought this place would always be somewhat anonymous for me!!!! Oh well-I'm glad I met you guys. ( I still went back and read my other threads to make sure I hadn't written anything really dumb!!:) Whew!
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/11/2007 6:41 PM (GMT -7)   
Thank you for taking the time to go and meet with this company. And to share your story with us! I think it is totally awesome that a large company such as Shire was willing to listen to you all. Thanks for being the voice of Ibd'ers :)
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


LoLoinNJ
Regular Member


Date Joined Jun 2007
Total Posts : 57
   Posted 11/15/2007 8:43 AM (GMT -7)   
I also agree with Leslie. It was a real eye-opening experience. I'm so glad I go the chance to participate. It was great meeting everyone too!
laurie
33 year old stay at home mom to a fantastic 3 yr old boy : )
diagnosed in 1999, Flared from June to Sept.
PREscriptIONS
asacol 3 - 3x's a day, rowasa - 1X every other week. OTHER SUPPLEMENTS
multivitamin, omega 3 fish oil, fibercon

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