Being recruited for Colal-Pred study!

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fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 5/21/2008 2:37 PM (GMT -6)   
I called my doctors office today b/c my flare is back, but I told them I do NOT want Pred if it can at all be avoided. The nurse called back and said that my doctor is one of only a few in the US that is doing the Colal-Pred study and that he wants me to do it. I'm so excited! Colal-Pred is a steroid that has a special coating, only broken down in the colon, so most of the horrible side effects of prednisone are avoided, but you still have the benefits of the drug. I'm praying that I'll get the drug and not a placebo!!! I looked on the website and it looks like they are also recruiting in Florida, Illinois, New Jersey & New York. Do a google search for "Colal-pred study in U.S." It's only been overseas until now. Is anyone else participating in this study?
Renee
Diagnosed w/ UC in August 2007
Current status: Flare

4 Lialda/day, Rowasa or Canasa at night, Wellbutrin XL


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/21/2008 3:20 PM (GMT -6)   
Man! All the clinical trials in Florida are always in Jacksonville. It's not THAT far away from me but I just wouldn't be able to do it. Anyway, it looks like I wouldn't be qualified anyway as I have a history of gastritis as well.

I hope it works out though and they finally release a drug we can take instead of pred with similar results and less side effects! It's about darn time!

Good luck :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/22/2008 7:56 AM (GMT -6)   
Oh - that sounds interesting! Less side effects would be great! Let us know how it goes :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
10mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


quincy
Elite Member


Date Joined May 2003
Total Posts : 30611
   Posted 5/22/2008 10:54 AM (GMT -6)   
It would be like entocort oral and geared more for UC than CD of the ileum...but probably allowed to also be released at the start of and then farther into the colon.
 
Deep us posted as to how it's going for you.
 
It's definitely good news!
 
q


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jack99
New Member


Date Joined Sep 2006
Total Posts : 19
   Posted 5/22/2008 2:13 PM (GMT -6)   

Hi,

I've been taking predocol which I believe is pretty much the same thing i.e a poorly absorbed prednsiolone salt in an asacol type casing.  I've been on it continuously now for around 2 years - it does work to a point - not as quickly as oral prednisolone but kicked in over 2-3 weeks for me.  There are still the same problems with becoming steroid dependent as I am but less systemic side effects - i.e my weight hasn't changed much.  My bones are slightly thin though so there must be some systemic abosrption.  It is only available either as part of a trial or on an unlicensed named patient basis.

Hope this helps

 


ucenigma
New Member


Date Joined May 2008
Total Posts : 13
   Posted 5/22/2008 9:36 PM (GMT -6)   

fitmom...

Would like to know more about this study....I live in Florida....I know it's only a symptomatic reliever, but having a better way to deliever the Pred. would really help....

Is the study still open?  How do I sign up? 


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 5/23/2008 6:20 AM (GMT -6)   
Since I'm going on vacation next week, they want me to start the study after that, so in the meantime my doc has given me a steroid enema to get my symptoms under control so that I can semi-enjoy my vacation. For those of you that have used the enema, how long does it take to work?? I did my first one last night but only retained it for about 2 hours, hopefully that will do the trick. I can't tell anything this morning.

ucenigma - My doctor approached me, so I'm not sure what you'd have to do ... I know there is a website called clinicaltrials.gov that may have it listed w/ contact info?? If you can't find it, let me know and I'll ask my doc.
Renee
Diagnosed w/ UC in August 2007
Current status: Flare

4 Lialda/day, Rowasa or Canasa at night, Wellbutrin XL


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/23/2008 5:01 PM (GMT -6)   
ucenigma: Here is the info-

http://www.clinicaltrials.gov/ct2/show/NCT00676832?term=ulcerative+colitis+florida&recr=open&rank=14

United States, Florida
Prometheus Investigational Site #007 Recruiting
Jacksonville, Florida, United States, 32256

Contact: Jules T. Mitchel, Ph.D. 212-681-2100 ext 0 julesmitchel@targethealth.com
Contact: Glen D. Park, Pharm.D. 212-681-2100 ext 107 gpark@targethealth.com

Please refer to this study by its ClinicalTrials.gov identifier: NCT00676832



According to the website they are still recruiting but it might not be entirely accurate. I tried to get on a clinical trial that the website said was still open for recruits, but then I found out they had stopped recruiting months ago.


Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


ucenigma
New Member


Date Joined May 2008
Total Posts : 13
   Posted 5/23/2008 7:39 PM (GMT -6)   

edie and fitmom:

Thanks for the help.  As everyone is on holiday, I will call/write the Dr's mentioned first thing Tuesday.

Have a happy Memorial Day!

 


JD
Diagnosed with UC in 1997
Presently on Pred. and no options to do anything else....."in bed with Pred.." LOL!
 


UCgoaway
Regular Member


Date Joined Feb 2009
Total Posts : 43
   Posted 3/6/2009 12:01 PM (GMT -6)   
fitmom - Do you have any updates for us?  I'm very interested on how it went...
Current Regimen:
 
30mg Pred (tapering)
3 x 3 Colazal
BuSpar for GAD
40mg Protonix
Forvia multivitamin
Align Probiotic
Turmeric, Boswellia, Fish Oil, and Milk Thistle (for my liver)

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