Abatacept to Golimumab

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Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/3/2008 12:31 AM (GMT -6)   
Well, after a year on the Abatacept trial, the GI has decided to move me to another trial.

Although we have had great success on Abatacept (Getting me from 50mg of prednisone a day down to 0 etc), the results are TOO SLOW. We believe that this is due to the infusions being spaced too far apart. A fortnight would have been far more successful rather then monthly infusions.

So off we go - onto another trial I go!

Still looking into this Golimumab stuff, but it looks like it follows along the same lines as Remicade and Humira. "Supposidly" it works really well and really fast - God I hope so! Its been 3 years without a life. Have lost my house, relationship and job. Would be nice to be able to go for a walk without having to worry that there is no toilet nearby!
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-MP twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xteaspoon of Metamucil smooth powder 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day;
    - 3xGarlic Oil caps 2 times a day, 5mL Olive Leaf Extract 2 times a day.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/3/2008 8:44 AM (GMT -6)   
Severin - I hope this trial works better for you! Sorry to hear things aren't looking up as expected with the Abatacept. It's good to know your GI is informed about all of these new things.

Hang in there :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/3/2008 10:13 AM (GMT -6)   
God... I have to ask- Is your colon worth your house, relationship, & job? Does your GI ever mention surgery?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 471
   Posted 4/3/2008 3:27 PM (GMT -6)   
Severin - Sorry to hear of what happened. I've been on the abatacept trial for a month now and it is going okay.  If it got you off Pred, then why not stay on it?  Does it not keep you in remission?

Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema - Had to stop as not allowed during trial
EPA Fish Oils, Various Homeopathic meds
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
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/3/2008 6:00 PM (GMT -6)   
Hey Severin, are you doing this trial in Australia? I haven't even heard of it. Can I ask what city is running the trial? (I'd understand if you'd prefer not to answer so you can preserve your anonymity).

I, in Aus too.
Co-Moderator Crohn's Forum.


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/3/2008 9:07 PM (GMT -6)   
Severin, I am sorry that the Abatacept isn’t working as well as you would like. Please give it a serious consideration before changing to another study. It is possible that Golimumab may not work as well as the Abatacept. I have been on 2 clinical studies and neither one has worked for me. Just today I am officially finished with the Abatacept study. Good luck with whatever you decide.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic 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.
Currently in Abatacept trial - waiting for remision
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/3/2008 11:43 PM (GMT -6)   
Eva Lou - Unlike the job, house etc, my colon once removed can not be replaced.

KSU - I am not in remission. For the past 2 infusions there has been no further improvement.

Ivy6 - Here is the info on the clinical trial i am going to be part of and the locations.

Paul L - Sorry the Abatacept did not work for you. Seems a lot of people had little to no luck due to the frequency of infusion being to far apart.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xAbatacept 10mg/kg per month;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2008 2:55 AM (GMT -6)   
Thanks for that, Severin. And I've just realised why I've never heard of the drug. This is the UC board, not the Crohn's forum!

LOL. I have no idea how I got here. Probably clicked the wrong link or something.

Thanks again; cheerio and good luck with whatever you decide to do.

I.
Co-Moderator Crohn's Forum.


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 471
   Posted 4/4/2008 4:58 AM (GMT -6)   
Severin - Are you still on Abatacept now? How are your symptoms? And how are they in the days following an infusion?

Paul L - I am sorry to hear you are now off the abatacept study. Did you get no benefit from it at all? Not even a little?

Thanks

**Please limit signature to 10 lines or less. Thanks!**

Post Edited By Moderator (tjf) : 4/4/2008 6:09:38 AM (GMT-6)


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/4/2008 8:25 PM (GMT -6)   
KSU, I thought I was getting a little better the third week after my third infusion of the open label study but after reviewing it I believe it was just my normal ups and downs with this disease. If you want to read more about my resent stopping of the study, go go:
 
 
Take care,

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic 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.
Currently in Abatacept trial - waiting for remision
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/7/2008 3:18 AM (GMT -6)   
KSU - I have just exited the Abatacept trial. The symptoms are far better then they were when I first entered this trial. When I started, I was on 50mg of pred a day which I had been on for over 12 months and all the doctors told me there was nothing they could do but cut my colon out as it was all inflamed. I entered the trial and things did get better once I was on the open label. It took 5 infusions on the open label for it to have any really noticeable effect. It took 7 to get me off the prednisone and I am still off it. It is however working far to slowly and my GI recons this new drug will work far better for me.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xAbatacept 10mg/kg per month;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.

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