My Abatacept Trial Update

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 478
   Posted 5/9/2008 1:05 PM (GMT -6)   
Hello All
 
I am now 3 months into the trial - and had my sigmoidoscopy today to see if there had been any improvement in my UC.
 
I was expecting only marginal improvement but it has been dramatic. I cannot believe it.
 
In February I had severe UC with mayo score of 10.  Today, the report said mild with a score of 1.  So, I am thrilled.
 
On Monday, I enter stage 2 of the trial and get re-randomized.  Slightly worried that I may get placebo this time, but I am praying that I don't.
I am still experiencing side effects - back pains are bad, but bearable.
 
I can also now start to come off steroids, which I have been on for 5 years....
 
I will write back after Mondays infusion and whether I think it is placebo or not :)
 
Take care
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30840
   Posted 5/9/2008 6:06 PM (GMT -6)   
Wow, looks very positive for you that it is the abadacept. Congratulations that you're healing so well and on finally tapering to get off the pred. That in itself is a huge plus.

What do you mean getting rerandomised?

quincy
*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 !!!


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/9/2008 6:34 PM (GMT -6)   
Congrats! That's great news!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 5/9/2008 10:13 PM (GMT -6)   
Congratulations KSU, It sounds like it is really working for you. I entered the study with a score of 9 and at the end of the induction period I had a score of 10. Unfortunately the open label didn’t work for me either.

Quincy, KSU just finished the Induction period of the study. The following is from the information I have from when I was on the study. It will explain the different phases of the study:

“Induction Period: If after the screening period, you qualify for the study, you will enter a 12-week Induction Period. This is a double-blind period which means neither you, nor the study doctor will know which dosing regimen you are receiving, except in an emergency. During this period, you will receive study medication on Days 1, 15, 29, and 57. You will randomly be assigned by chance (like the flip of a coin), to receive placebo, 3, 10 or 30/10 mg/kg abatacept in a double-blind manner. You will have a 29% (2 out of 7) chance of receiving placebo.

Maintenance Period: If you respond well to study treatment, you will be eligible to begin a 12-month Maintenance Period, where you will be randomly assigned to receive either abatacept (at a dose of 10 mg/kg) or placebo. You will have a 50% (1 out of 2) chance of receiving abatacept, and a 50 % (1 out of 2) chance of receiving placebo.

open-Label Period (optional): open-label means that during this period you will receive active drug (approximately 10 mg/kg) and the study will continue until abatacept is marketed for the treatment of ulcerative colitis or until BMS stops the study. You may enter the open-label period if you do not respond to the study medication after the Induction period or during the Maintenance period, or if you complete the Maintenance period.”
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
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
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/10/2008 1:13 AM (GMT -6)   
Great news that its working so well for you. Abatacept helped me, but never got me to remission. Hope the 2nd part of the trial works just as well for you!
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 478
   Posted 5/10/2008 7:10 AM (GMT -6)   

Thanks everyone.

Quincy, as Paul L states, on Monday my GI will make the all-important phone call to the study sponsors to get me assigned into either real medication or placebo.

Severin, To be honest with you, I dont actually think I will achieve full remission either. Nothing does that for me - except HIGH doses of steroids, and we all know how bad they are.

But, if Abatacept allows me to come off the pred without the usual end result of me drowning in blood in the bathroom, then I am happy.

Take care


Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/11/2008 3:53 AM (GMT -6)   
Hey KSU - well, although it took quite a while, Abatacept certainly did allow me to come off of prednisone. Something I am incredibly thankful for!
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 478
   Posted 5/11/2008 5:37 AM (GMT -6)   
Severin - It's great Abatacept allowed you to come off the pred.  I know you came off the trial due to not getting into remission. But, are you not concerned that without the Abatacept you may end up needing to go back onto pred?
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 

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