Anyone heard of this?

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run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/31/2009 7:13 PM (GMT -6)   
My son just started Kineret injections to treat his Juvenile Rheumatoid Arthritis.  In reading more about how the drug works in the body, I got to wondering why it wouldn't help UC patients as well.  I am still reading up on this, but--in the process--I stumbled upon a treatment they are using in Japan and I wondered if anyone has heard of it.  It looks interesting:
 
 
Thoughts?  I would love to hear what anyone of a medical background thinks. 
 
Thanks!
 
UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Current treatment:
Lialda (4 pills 1xday)
Prednisone started 6/19 (2 wks at 40, 1 wk at 30, 1 wk at 20, 1 wk at 10)
Rowasa nightly
Specific Carb Diet


GLOVE
Regular Member


Date Joined Jul 2009
Total Posts : 321
   Posted 8/31/2009 7:21 PM (GMT -6)   
That is very interesting! Thanks for sharing!
UC since 2002- had remission for 6 years
recent flare 06/09- severe flare
Currently trying lialda, multivitamin, probiotics, fish oil, iron supplement
 tapered off prednisone 8/21/09
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 8/31/2009 7:27 PM (GMT -6)   
It would be interesting to see if there were any clinical trials in the US with this. I don't know why they wouldn't be looking at this here.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's for whatever that is worth-:)
 


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/31/2009 7:37 PM (GMT -6)   
So far all I've found is approval for use in Japan and some studies in Sweden.  There are a number of articles out there you can look over with a Google search.  It's very expensive treatment!
 
Right now I'm fascinated with Kineret and how it works and whether or not it might help patients with UC/Chron's.  It seems to me like it should...I think I'm going to take the insert and some research articles to my GI when I go later this month to get his thoughts on it. 
UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Current treatment:
Lialda (4 pills 1xday)
Prednisone started 6/19 (2 wks at 40, 1 wk at 30, 1 wk at 20, 1 wk at 10)
Rowasa nightly
Specific Carb Diet


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 8/31/2009 7:37 PM (GMT -6)   
Sorry for the double postings. Looks like it is in phase III clinical trials, which is the final testing phase for crohn's disease. Maybe we'll hear something by spring of 2010.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's for whatever that is worth-:)
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 9/1/2009 8:17 AM (GMT -6)   
The Adacolumn phase 3 studies for UC in North America ended a few years ago. I participated in the study hear in Toronto. I had 12 treatments in the first part of the study and later found out that I had the placebo. I then went on the open label (actual treatment) and had another 17 treatments with no improvement in symptoms. When the study was over I received a letter telling me I was on the placebo and that the effectiveness of the treatment compared to the placebo was only slightly better and as a result the treatment will not be approved for use in Canada and the US.

After talking to my GI about it he gave me several reasons why the study may not have worked out in North America but was fine in Japan.

1. UC in Japan may be slightly different then in North America.

2. The Adacolumns were manufactured in the US and may be slightly different than in Japan.

3. The Testing in North America may be more rigorous.

My GI said if they do find a reason they may correct it if possible and conduct more studies in North America.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 9/1/2009 10:35 AM (GMT -6)   
Very interesting, Paul.  Thank you for sharing your experience.
UC dx 2/08
Former treatment:
Asacol (2 pills 3xday)
Rowasa nightly x 6 weeks
Prednisone: 5 weeks spring 2009, 8 weeks summer 2009
Current treatment:
Lialda (4 pills 1xday)
B-12 Supplement
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/1/2009 4:19 PM (GMT -6)   
That's why these forums are so great, peole from all over the world are here and can share their experiences.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's for whatever that is worth-:)
 

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