HealingWell
Search Close Search
☰

Abatacept/Orencia...anyone tried it yet?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/8/2008 10:30 PM (GMT 0)
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.
Posted 1/8/2008 10:33 PM (GMT 0)
No I haven't tried it Carol. I just wanted to find out how you are doing?
Posted 1/9/2008 12:27 AM (GMT 0)
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.
Posted 1/9/2008 12:33 AM (GMT 0)
Do a search for Paul L - he was the one who posted updates about his Abatacept trial.
Posted 1/9/2008 12:35 AM (GMT 0)
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.
Posted 1/9/2008 12:44 AM (GMT 0)
Carol...I swear he was on recently w/ an update. I'm trying to find it for you.
Posted 1/9/2008 1:11 AM (GMT 0)
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.
Posted 1/9/2008 1:21 AM (GMT 0)
I found one of Paul's posts Carol!

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

Tara
Posted 1/9/2008 1:24 AM (GMT 0)
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
Posted 1/9/2008 2:02 AM (GMT 0)
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.
Posted 1/9/2008 2:54 AM (GMT 0)
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.
Posted 1/9/2008 4:04 AM (GMT 0)
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.
Posted 1/9/2008 2:49 PM (GMT 0)
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?

Posted 1/9/2008 4:26 PM (GMT 0)
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.
Posted 1/9/2008 4:30 PM (GMT 0)
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
Posted 1/9/2008 4:50 PM (GMT 0)
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.

Posted 1/9/2008 5:30 PM (GMT 0)
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
Posted 1/10/2008 8:05 AM (GMT 0)
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!
✚ New Topic ✚ Reply