My 1st Abatacept treatment

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 2/20/2008 6:58 AM (GMT -6)   
Hi all
 
I had my first infusions yesterday as part of the Abatacept trial (im in the UK).
 
Its taken 6 months (!) to get onto the trial due to various problems at the research centre.
 
The infusions took around 90 mins in total, and obviously I have no idea if I got the real thing or the placebo.
 
Havent really noticed too much change today.  Except, I am more tired than usual and my back hurts and so does my throat.  Really hope this works.  My next infusion is in 2 weeks time. I believe I am the only UC patient on the trial at my hospital.  A few CD patients are due to enter in a few weeks I am told.
 
It took me back to to my remicade infusion days.  I just hope this is more successful than they were!
 
Back on Pred - 7mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema
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
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/20/2008 7:19 AM (GMT -6)   
I will cross my fingers for you and hope that you don't have the placebo and this works for you! You've had a rough road so you deserve a break :)
 @--->--SHERRY--<---@
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~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
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Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 2/20/2008 8:41 AM (GMT -6)   
Hey KSU, keep us updated as to how you are doing -- I'm very interested as my doc keeps wanting me to try this. I'm on Remi now and doing well so far...but as you can testify; you just never know! Good luck with the treatments and thanks for the info.

Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 2/20/2008 3:42 PM (GMT -6)   
Thanks Sherry and Carol. 
 
I will of course write back and keep everyone informed. Today, I was too tired to go into work. I am totally wiped out.. 
 
From what I can gather, it seems quite difficult to get on the trial.  Quite a few people at my hospital were denied entry to the trial as their mayo score was not high enough. 
 
I had to have tried and been failed by every UC drug on the planet.  Have a colonoscopy showing moderate to severe active active disease, and frequent blood and urine tests.  Also, rectal meds and probiotics are banned for the entire 2 year trial.
 
 
Back on Pred - 7mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema
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
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/20/2008 10:40 PM (GMT -6)   
KSU - Hope it works for you. I've been on the Abatacept trial now for nearly 10 months - 4 months placebo controlled and 6 months on the open label.

All I can say is be patient. Abatacept doesn't seem to work as quickly as remicade.

Keep us posted :-)
"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.


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/20/2008 10:55 PM (GMT -6)   
I wish you the best with the trial. I have been on the Abatacept trial here in Toronto Canada since last September. I had 4 infusions of the placebo portion of the study and showed no improvement. I still don’t know if I was on the placebo or not. I then went into the open label part of the study and I have had 3 infusions of the real medication. My symptoms have been up and down for the last few weeks and I’m not sure if it is starting to work for me or not. I haven’t experienced any side effects at all. Keep us informed. I would like to compare notes. My next infusion is March 6th.
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
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 2/21/2008 3:40 AM (GMT -6)   
Hi Severin and Paul - Its interesting to hear your stories on Abatacept.
 
I see you both went to the open label part of the study quite quickly.  Did you have to go through another scope to get there?  I think the stage 2 of the trial is more tricky - as you have a 50% chance of placebo compared to stage 1 which is only 30%.
Also - did your counts detoriate?  On remicade, my WBC dropped so low, they kept me in hospital until it improved.  I asked the trial Dr about this, and he said if that happened on the trial I would be taken off!
 
Well, this is my 2nd day after the infusion. Its very early days  but I do feel a little better. Normally, I cant turn sides while sleeping without running to the bathroom but now I can. And my morning BM today was formed and no blood.
 
But, like you say, my symptoms also differ greatly from day to day. So, I will see how I am for the next few days before I know for sure.  My back still hurts - it began hurting right after the infusion, and hasn't stopped since.
Back on Pred - 7mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema
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
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/21/2008 12:06 PM (GMT -6)   
KSU, I had a second scope just before my 5th infusion. Actually it was the morning of the same day as the 5th infusion. At that time I did not know if I was going on the maintenance period (50% chance of placebo) or the open label until I met the study nurse after the scope. To enter the maintenance period I required a 30% improvement from when I started the study. I originally had a score of 9 and after the second scope I had a score of 10. That meant my symptoms got slightly worse and I was put on the open label. There is one other UC patient on this study with me and he also went on the open label for the 5th infusion. I have never had a problem with my WBC, not even when on Remicade.
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
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 2/22/2008 11:23 AM (GMT -6)   
HI Paul
 
If your score went from 9 to 10, then you must have had placebo?  Now, you have had an open label infusion, did you notice any difference afterwards compared to the earlier infusions?
 
My score is 10, so I think if I got  a 7 in my next scope, I would go into the maintenance. 
 
I hope the open label med starts working for you.  Today is much worse than yesterday and I had to wake up real early to go to the bathroom :-(  So, I dont think it is working for me yet. 
I am just so impatient.
 
 
Back on Pred - 7mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema
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
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30408
   Posted 2/22/2008 12:13 PM (GMT -6)   
KSU....It's exciting to hear of others getting the abadacept.....I have my fingers and toes crossed!!

Keep us posted!

It's good you and Paul will be able to compare experiences...

I hope you start to feel better over the weekend...Patience, while difficult going through feeling crappy, will help.

Would you be able to take any other meds such as antispasmodics or maybe even fibre to help bulk up the stool a bit easing some of your symptoms?

I'm assuming you'll also not be able to take any other homeopathinc preparations either?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd 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 ....bromelain 1 - 2x 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 !!!


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/22/2008 9:26 PM (GMT -6)   
KSU, just because my symptoms didn’t improve and actually got slightly worse doesn’t mean I was necessarily on the placebo. I just don’t know for sure. My study coordinator has been involved with IBD studies for many years and she says she has seen patients who swear they were on the real medication but turned out to be on the placebo and vise versa. Remember that this is a study to determine how effective Abatacept is. No treatment works for everyone. I have tried many treatments that didn’t work for me but have worked well for many on this forum.

I had my 3rd open label infusion February 5th and up until then I had no improvement in symptoms. For the last 2 weeks things may be getting better but it is difficult to tell, especially when my symptoms are up and down all the time. I have never felt anything unusual from any of the infusions, not even from the open label. I have absolutely no side effects. Just give the treatment time. I was told that it generally takes 3 to 4 infusions before it starts to work if at all.
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
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 2/23/2008 6:50 AM (GMT -6)   
Thanks Paul, yes I guess you are right.  You just cant tell about the placebo.
My next infusion is on 4 March.
 
Quincy - I think you can take homeopathic meds and fibre - at least nobody has told me otherwise!
 
Back on Pred - 7mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg
Predfoam Enema
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
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30408
   Posted 2/23/2008 1:54 PM (GMT -6)   
make sure you ask because homeopathic/naturopathic remedies are still meds and can have some ill effects when mixed with other meds.

q
*Heather*Status: mini flare Dec 28... tapered to every 3rd 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 ....bromelain 1 - 2x 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 !!!

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