New Crohn's Treatment

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ROIDS
New Member


Date Joined Feb 2009
Total Posts : 12
   Posted 2/13/2009 7:24 PM (GMT -7)   
http://www.osiris.com/clinical_trials_prochymal_crohns.php

-Click on the phase II research results, I am curious to see if anyone has actually been involved in the trial period? My uncle is in the biotech industry and is working to find a cure for crohns, he has said the results are beyond anything they have ever seen before. If anyone has any information on this, I would like to know. I tried to apply for phase III, but I didn't meet the requirements.
-I am new to this community and have had crohn's for about 12 years (I am a 24 yr old male). I look forward to reading up on this disease and the people it effects.

RooR
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/13/2009 7:40 PM (GMT -7)   
That looks pretty promising! I'm 19 and just had surgery last summer, because I did not respond to steroids, biologics, or immunosuprressents

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/13/2009 8:24 PM (GMT -7)   
Welcome to the forum ROIDS. It must be tough to develop crohn's so young. I'm sure you've developed many strengths by being tested so young.
Belleenstein:

30+ years living with Crohn's.


ROIDS
New Member


Date Joined Feb 2009
Total Posts : 12
   Posted 2/13/2009 8:36 PM (GMT -7)   
Yea it didn't take too long for the doctor's to diagnose me, my sister was already diagnosed with crohn's a few years prior. But the funny thing, the doctors didnt think it was crohns because my sister already had it. Needless to say, 4 out of the 7 kids in my family have crohns and my other brother has IBD, so 5 out of 7 have some form of it. Neither of my parents have the disease and there is no prior history to the disease. Anyways, interesting stuff and look forward to reading up about it.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/13/2009 10:41 PM (GMT -7)   
ROIDS said...
 my other brother has IBD, so 5 out of 7 have some form of it. Neither of my parents have the disease and there is no prior history to the disease. Anyways, interesting stuff and look forward to reading up about it.
What kind of IBD does your other brother have?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/14/2009 1:53 AM (GMT -7)   
If you click on the "new meds thread" (under the Crohn's resources thread, or hopefully on the front page of this forum, because I'll bump it for you) you'll find plenty of discussions about Prochymal. We've had a few people here who've participated in the trials.

Ivy.
Co-Moderator Crohn's Forum.


RooR
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/14/2009 2:09 AM (GMT -7)   
belleenstein said...
Welcome to the forum ROIDS. It must be tough to develop crohn's so young. I'm sure you've developed many strengths by being tested so young.


I was diagnosed at 9 mad, I'm 19 with a colostomy now sad

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 2/14/2009 4:56 AM (GMT -7)   
ROIDS said...
Yea it didn't take too long for the doctor's to diagnose me, my sister was already diagnosed with crohn's a few years prior. But the funny thing, the doctors didnt think it was crohns because my sister already had it. Needless to say, 4 out of the 7 kids in my family have crohns and my other brother has IBD, so 5 out of 7 have some form of it. Neither of my parents have the disease and there is no prior history to the disease. Anyways, interesting stuff and look forward to reading up about it.


I am the only person in my large family to have crohns. Neither my parents or grand parents had crohns. I thought it was genetic???

vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 2/14/2009 8:14 AM (GMT -7)   
I'm in the trial now.  I just had my second infusion last  monday and my third is scheduled for Tues and the last one the following Monday.  I researched everything I could prior to entering the study, asked every question I could think of.  The easiest question I felt they could answer was "How long has anyone stayed in remission  following the four infusions".  I asked all doctors assigned to me in the study and the response was, "we're still evaluating the data".  Well, during my infusion Monday I said "I can't believe I could live without thinking about Crohn;'s every day".  they said at that point, "oh no, this isn't a cure, at best this might be a monthly infusion for the rest of your life, it's several years away from being put before the FDA".  So, after a cat scan, the most horrible colonoscopy of my life following an upper endoscopy with 50 biopsies in total, I was in a fetal position on the floor of my hotel.  It took four days for the air to begin to pass...horrible pain.  The dr couldn't find the end of my colon during the colonoscopy and ended up 20 cm in my ileum. Now they finally tell me that they are hoping for pain relief for one month! They have applied for "compansionate care" thru the drug companies before during studies, but I was told that it was never granted due to the liability. I'm suppose to have another colonoscopy on March 9 with 30 biopsies...no way.  If there's no hope of long term remission, I'm done.  I can't wait 3-5 years for this to POSSIBLY be on the market.  It's just not a fair trade off.  I'm a lab rat, a walking specimen. 
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