My Abatacept Study Update

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/27/2008 7:53 PM (GMT -6)   
For those that have been following my Abatacept study for UC, I recently received an email from the study coordinator. It has been 3 weeks after my forth open label treatment and she wanted to know if my symptoms were improving. Unfortunately they have not. I have been having 8 to 12 urgent bloody BMs per day for the last few weeks. My symptoms vary considerably day to day. My best week throughout the entire study and probably for the last 3 years was the second week after my third open label treatment. I really though it was starting to work and I was hoping the fourth treatment would work even better. It didn’t and now the study doctor is recommending I stop the study. A flexible sigmoidoscopy is scheduled for me on Thursday of next week. If that scope doesn’t show improvement from my last scope, 4 months ago, I will be stopping the study. At that time I will decide my next strategy but surgery looks closer than ever.

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
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30408
   Posted 3/28/2008 1:40 AM (GMT -6)   
Hi Paul....too bad this wasn't one to work for you. You've given everything a fair trial to no avail. I know I wouldn't have been able to endure all you have..plus work full-time with a family..etc.

I definitely would have surgery at the top of my list. How are you feeling about that probability?

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 !!!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/28/2008 5:56 AM (GMT -6)   
sorry to hear that, Paul- I know you had high hopes. Me too! Hey, surgery can't be that bad, can it? I dunno.... I feel relief having a date scheduled for surgery. One can't go on being a medical guinea pig forever!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 3/28/2008 6:04 AM (GMT -6)   
Ah man! I'm sorry to hear that. I was hoping it would work for you. Keep us posted on what your next move is. Hang in there!!!
Tabitha (Tab)

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

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


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 3/28/2008 6:06 PM (GMT -6)   
Very sorry to read your post about Abatacept not working. Can you think of anything particular that could have influenced your one good week after the 3rd infusion? I agree that you are to be commended for doing so much while fighting off the UC! Have any of your doctors ever recommended cyclosporine? One reason I ask is that a couple members posting here longterm did get to remission on it after treatment at Mt. Sinai Hospital in NYC, one of whom wrote that his gastro's mentor calls it "the A-bomb for UC". / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/30/2008 12:26 PM (GMT -6)   
Thanks everyone, I have never liked the thought of surgery but the possibility is getting closer. When I see my GI on Thursday for my scope we will talk about all remaining options including surgery. I know my GI is involved in other clinical trials but I’m not sure if I want to try another one.

Old Hat, my GI and I did talk about cyclosporine a while ago but I then entered a trial instead. The GI said he would have to first admit me into the hospital before starting it. He said it is more for severe cases to get them under control quickly but he said it may be a possibility for me although he said it isn’t considered a maintenance treatment. I may talk to him about it again on Thursday. As far as the one good week after my third open label treatment, I don’t find it to unusual. My symptoms are always up and down, even when I’m not on any treatments. It really makes it difficult to tell if a treatment is working or not. I had good weeks before but it just so happens that the last one was slightly better than most.

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
 

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