My Abatcept Trial Infusion Report

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 466
   Posted 6/17/2008 1:44 PM (GMT -7)   
Hello everyone
 
I had my 6th Abatacept trial infusion last week.  Things appear to be going well.  Initially, I was very concerned that I had been put into the placebo group but I now think this unlikely.
 
I am having around 3 or 4 BMs a day, usually no blood.  Still have urgency though. 
One thing  I have noticed though is incredible fatigue.  Its terrible. Im hoping it will pass...
 
I think the Abatacept is working great, I just really hope it continues to.
 
It's the only thing saving me from surgery.
 
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
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 6/17/2008 2:37 PM (GMT -7)   
good to hear! I'm happy for you- I hope it continues working also. Maybe the fatigue is from the low pred dose, ya know, going off 'roids then back on? Your poor adrenal glands! I'm like you- I never have D, rarely see blood, maybe 4-6 bm's a day... but darn that urgency! I still have only like 1 minute to find a toilet. I wonder if it'll ever go away. It's annoying, to have that as your main symptom! Although I'll take it over the other symptoms I've had. Well keep us posted! How long does the trial go anyways? And can you contiune to get the drug open label if it helps? Do they do scopes frequently?

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


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 6/17/2008 6:13 PM (GMT -7)   
Yeah, the fatigue is a real killer. I copped it physically as well as mentally while I was participating in the Abatacept trial. Body was so very very weak. It came and went for me in spurts. Usually for a week or so between infusions.

So glad to hear its helping 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 : 466
   Posted 6/18/2008 2:52 AM (GMT -7)   

Eva Lou - Yes, I discussed the issue of urgency with my GI and he said its usually the last thing to go when coming out of a flare and I should just hang in there. Also, we are not allowed rectal meds in the trial and I dont think helps either!

The trial is for 2 years and I am now 4 months in. The final 12 months are open-label and hopefully participants continue to receive the drug until it receives a license.  Yes, scopes are quite regular - I have had 3 already.  Each showed improvement, which I was really glad about.

Severin - I am glad you mentioned fatigue was also an issue for you, as I starting to think something was wrong with just me!  You are right, it comes and goes. Some times I have to go to bed at 9pm and other times I am wide awake at 1am.  Did you ever find you were walking out and about and suddenly it hit you?  It's like oh my god, if I dont sit down somewhere right this second I may just collapse?  UC has always made me really tired but it was never like this..

Thanks


Abatacept Trial since Feb 2008 (Maintenance 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
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 6/18/2008 9:32 AM (GMT -7)   
KSU, I’m glad to hear you are improving. I hope you obtain full remission soon. I have always had fatigue as part of my UC. When I was on Abatacept I didn’t notice any increase in my fatigue.

Take care,
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
 

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