Abatacept/Orencia...anyone tried it yet?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/8/2008 3:30 PM (GMT -7)   
I had an email from my doc asking if I'd like to try a new med called Abatacept; IV infused just like Remi. It's been approved for Arthritis, but I'm not sure how effective it's been for UC.
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

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


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 1/8/2008 3:33 PM (GMT -7)   
No I haven't tried it Carol. I just wanted to find out how you are doing?
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/8/2008 5:27 PM (GMT -7)   
I think a couple members here were participating in an Abtacept study. One poster has been writing monthly updates on his progress with the study.
23 years old
Diagnosed with UC March 2007; yet to go into remission
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


hedgehog
Regular Member


Date Joined Jul 2007
Total Posts : 102
   Posted 1/8/2008 5:33 PM (GMT -7)   
Do a search for Paul L - he was the one who posted updates about his Abatacept trial.
-female - 32 -diagnosed June 2006
-last 25cm of colon affected
-Salofalk enemas stopped working
-xylocaine enemas put me in remission
-Asacol 2 800mg pills 2x/day
-budesonide enemas as needed


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/8/2008 5:35 PM (GMT -7)   
I did the search and couldn't find his posts, but I really think he may have been getting a placebo. I haven't heard from him lately, and I was wondering how he was doing. I'll search a little further.
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
 
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/8/2008 5:44 PM (GMT -7)   
Carol...I swear he was on recently w/ an update. I'm trying to find it for you.
Tabitha (Tab)

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

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


hedgehog
Regular Member


Date Joined Jul 2007
Total Posts : 102
   Posted 1/8/2008 6:11 PM (GMT -7)   
Before I posted earlier that it was Paul L., I did a search just to make sure I had the name right. The search found all his posts. Now when I search for him I get all kinds of other stuff. I don't think the search is working properly.

hedgehog
Regular Member


Date Joined Jul 2007
Total Posts : 102
   Posted 1/8/2008 6:21 PM (GMT -7)   
I found one of Paul's posts Carol!

http://www.healingwell.com/community/default.aspx?f=38&m=994983&g=996486#m996486

Tara

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4801
   Posted 1/8/2008 6:24 PM (GMT -7)   
Carol,

If it is a clinical study then you might be given the placebo. Personally I do not think that it is worth trying if you are in remission.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/8/2008 7:02 PM (GMT -7)   
It's not a clinical study -- my doc is always on the cutting edge and I belong to an HMO. It's a difficult decision especially when you are in remission. When I started Remi, it hadn't been approved for UC as of yet, but at that point I was wanting anything that had a promise of getting me into remission. I know of Paul's posts; and I remember it wasn't working well for him, but he was also in the study so he might have gotten a placebo. I was just wondering if anyone was taking it knowingly and what kind of results they were having with it.
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
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/8/2008 7:54 PM (GMT -7)   
Hi Lonelylane. I've been in the Australian Abatacept trial since April 2007 and was moved to open label in July 07, so I have received 6 infusions that I am sure of so far.

My advice is that it works, but it depends on the dose and frequency. The open label dose works, but barely. Due to me going overseas we had to move a dose from the usual monthly infusion to fortnightly, and the difference was very pronounced in the positve kind of way.

Even though the open label dose is barely adequate, it has helped me get off prednisone, which for me is a huge plus.

I just wish my GI could actually set the dosage.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/8/2008 9:04 PM (GMT -7)   
Hi Carol, I finished the placebo portion of the trial with no improvement in my symptoms. I had the first treatment of the open label study a month ago. Tomorrow I have my second open label treatment. It is still too early to tell if the real thing is working. I’ll keep you posted.
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
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/9/2008 7:49 AM (GMT -7)   
Thanks Paul and Severin. Keep me posted on how you are doing. Are your infusions every 4 weeks then? When I read the info about the drug, the sheet said the infusions were given every four weeks and about 30 minutes long. Severin -- were you ever on Remi?

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
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/9/2008 9:26 AM (GMT -7)   
Carol, with the placebo controlled study the first 3 infusions were 2 weeks apart. After that they were every 4 weeks. The open label study I’m in now is every 4 weeks right from the start. The infusions are typically 30 minutes long. The first few in the placebo study were 2 hours. I was told that that was to help mask what dosage or placebo was used.

There are increased risks taking Abatacept and Remicade at the same time. I imagine your doctor would want you off the Remi for a time before starting Abatacept. For the study I had to be off Remi for 12 weeks. Has Remicade stopped working for you? I have my second open label treatment in less then 2 hours and I’m now off to the hospital. Whish me luck.
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
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4801
   Posted 1/9/2008 9:30 AM (GMT -7)   
Carol,

If you do decide to go with Abatacept good luck with getting your HMO to approve your treatment without having a DX of arthritis.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/9/2008 9:50 AM (GMT -7)   
Well, they paid for the Remi before it was approved by the FDA, and it's Kaiser, so it's not like I go to a private doctor that carries my HMO. My doc is involved in a lot of the trials which I am thankful for because that means he's always on the cutting edge of things.

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
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4801
   Posted 1/9/2008 10:30 AM (GMT -7)   
Carol,

They probably approved Remicade for you because it was all ready approved for Crohns.... similar to Humira, not that it is approved for Crohns you are see more and more UC patients being covered by their insurance companies for Humira.

I could be wrong.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/10/2008 1:05 AM (GMT -7)   
Lonely Lane - I've never used Remicade before for my treatment. I see it as one of the more last ditch drugs for me due to the possibility of becoming resistant to it and I may need it one day.

Paul L - I and the other UCers in my trial group noticed it started to have some small effect after the 4th dose, and each dose after that is more noticeable. Hope it works faster for you!
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 2xScoop of Sustagen Sport per day;
    - 1xBIOCeuticals UltraBiotic 45 per day, 1xBIOCeuticals SB FlorActiv per day;
    - 1xHeaped teaspoon of Metamucil smooth orange powder 3 times a day.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 10, 2017 9:17 PM (GMT -7)
There are a total of 2,903,846 posts in 318,690 threads.
View Active Threads


Who's Online
This forum has 158101 registered members. Please welcome our newest member, mudwoman.
303 Guest(s), 7 Registered Member(s) are currently online.  Details
PeteZa, Cassi84, notsosicklygirl, astroman, Anjne, garyi, B99