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MichelleR
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/21/2009 6:08 PM (GMT -7)   
I'm new to the forum and have found the posts very informative. I'm wondering if anyone has participated in the clinical trial for Ustekinumab. My GI suggested it today and gave me a lot of information about the drug and the protocol. I was just interested to know what someone who had received the medication thought or if anyone had any suggestions.
Diagnosed with Crohn's 7/2007. Tried Entocort, Humira, Remicade, Cimzia, and Imuran. GI recently suggested research studies.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/21/2009 6:41 PM (GMT -7)   
There was someone here a while ago asking a similar question, but I can't remember who it was. I can't remember, either, if there were any helpful replies - all I remember is that many of us were saying that this med sounded like a country in Eastern Europe :-)

Have you tried using the search function? You might be able to find the thread that way.

Welcome to the forums!

Ivy.
Co-Moderator Crohn's Forum.


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/21/2009 6:47 PM (GMT -7)   
It sounds promising, mostly because it might be a great option for people who cannot do the anti-TNF drugs. I read that eventually you might be able to get down to one infusion every 3 months...nice for a change.
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/21/2009 7:05 PM (GMT -7)   
Hello MicheleR! Welcome to the forum. This is a great place! Haven't heard of this drug but i will look into it. Looks like your gone through a number of them. I hope you find something that works for you!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/21/2009 7:48 PM (GMT -7)   
Apparently it's already approved in Canada for Psoriasis, so I guess it's "safe", the only question now is effectiveness for Crohn's. From what I read it worked better than Enbrel for Psoriasis, so maybe it will be more effective than the other biologics. It's made from our friends at Centocor.

Cbk, what is the difference between an anti-tnf biologic and a non-anti-tnf biologic? Curious...
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 1/21/2009 10:50 PM (GMT -7)   
It's an IL-12/23 inhibitor. I've read accounts from patients who have Psoriasis that it's almost like a cure for them, causing close to 100% clearing in the majority of them, and like another poster mentioned, it only has to be taken a few times a year.

Also, most Crohn's patients have a mutation in the IL-23 gene, so this should be a very effective drug.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/22/2009 6:34 AM (GMT -7)   
I googled the drug and found a number of articles. Here's one:
http://www.medscape.com/viewarticle/582474

Doesn't sound like it works. Too bad!!!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


Ladybugs
Regular Member


Date Joined Jan 2006
Total Posts : 158
   Posted 1/22/2009 6:51 AM (GMT -7)   
I was the one who started the thread a few months ago.
 
My doctor is really excited about the clinical trial and wants me to participate.  I've tried just about all of the other meds out there with the exception of Tysabri and I haven't really responded to any of them.
 
I don't know a whole lot about Ustekinumab, besides what my doctor has told me.  The one reassuring thing that he stressed to me is that the safety data looks good so far.  
 
I go to see my GI again on 2/3 and we'll decide then if I'll enroll in the study. 
 
let us know what you decide to do.
 
Take care.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/22/2009 8:48 PM (GMT -7)   
From reading the article, the second response rate wasn't much lower than the first, so the reason that it was declared to be not much better than placebo was more due to the fact that the people on placebo in remission went from 30 to 40 percent. So I wouldn't give up on it yet.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


mogulz
Regular Member


Date Joined Sep 2008
Total Posts : 21
   Posted 1/26/2009 1:15 PM (GMT -7)   
I recently participated in the phase 2b trial for Ustekinumab for Crohn's, and unfortunately the results were dismal. I have had Crohn's (Crohn's colitis) for more than 15 years and over that time have tried and lost response to just about every course of treatment (Flagyl, Cipro, 6MP, Canasa, local cortizones, Remicade, Humira) and therefore elected to participate in the trail. Sadly, while Ustekinumab is being touted as the 'next big thing', my experience with it was entirely unsuccessful.

I had a severe reaction to the treatment: A few days after receiving the infusion (which we assume must have contained medicine), I had shaking chills, heavy night sweats and worsening symptoms. This lasted for about two weeks and we were able to reduce the chills with acetaminophen every 4 hrs. I needed to use the restroom 8-10 times a day and had little to no warning before needing to find one. Needless to say, we opted to discontinue my participation in the trial and I'm now on 45mg of Prednisone daily and showing improvement.

cutie
Regular Member


Date Joined Jan 2009
Total Posts : 80
   Posted 1/26/2009 1:24 PM (GMT -7)   
I'm so sorry to hear that. Maybe there's something else out there waiting to be found. You never know!
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.

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