Thoughts on using Remicade to induce remission only

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

Veteran Member

Date Joined May 2005
Total Posts : 1362
   Posted 3/26/2008 6:18 PM (GMT -6)   
Hi everyone! I am looking for some input here. I have been on Remicade twice in the past with about a three year break in between my last infusion a couple years back and my first infusion again this past fall. I was on the Remicade a while back for a year, and it cleared up my colon before I began having a flare. I was on it again from this past September until November when I began having a flare again. My question is this: could it be possible that the Remicade can help get my disease under control, but maybe it doesn't work long term for me? I see my GI next week and I am going to suggest that I get the initial three infusions again. I also want to talk to him about starting methotrexate. My thinking is that maybe the Remicade can calm down my disease while the MTX builds up in my system. Any thoughts or experiences?
"Of one thing I am certain, the body is not the measure of healing - peace is the measure. ~George Melton~"

Current Meds include:Sulfasalazine and Zofran. With a new doctor, forced to retry all the meds that haven't worked in the past :(

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 3/26/2008 10:33 PM (GMT -6)   
i started remicade shortly after it got approval. i felt great after taking it. i did build up antibodies to it in mid/late 2006. i dont take it any more because i found the makers diet which showed me that i can feel great w/o it. but anyhoo, it is supposed to prevent/heal fistulas. i was on it for years and i developed a fistula from my colon to my bladder. also my colon was narrowing a lot. it was hard to do the scope with the smallest size. so how, imho, with hindsight, i think remicade only masked my symptoms and made me feel physically better but was not helping the disease at all as it only got worse. i ended up having surgery.

as for immunosuppressants, i dont like them either. i was 6-mp for like 11 years. i never felt it did anything for me but i took it any way cos the doctors told me too. i only stopped taking it after suspecting (correctly i surmise) that it was causing my anemia via bone marrow suppression. so i dont take that one any more either.

these are my personal experiences and opinions based on them. do not take them as blanket statements for every one. some people swear by these meds. talk to them too. talk to your doctor or even other doctors.

best of luck to whatever you decide.
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 3/27/2008 10:06 AM (GMT -6)   
It is known that if you go too long between Remicade infusions (more than 16 weeks, according to Centocor) you are more likely to build the antibodies to Remicade. Once you have the antibodies, you've lost Remicade. According to my doctor, some people stop responding entirely to TNF-alpha blockers. so, it seems risky to me to mess with the regular maintenance dose of Remicade. That's just my thoughts...
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

Veteran Member

Date Joined Jan 2003
Total Posts : 1668
   Posted 3/27/2008 3:10 PM (GMT -6)   
Not sure you would have to go route of the 3 initial doses again. You don't say what dose of Remicade you are getting (single?, double?) or how often you get it.

Could try a higher dose for a short time and a shorter time in between infusions ie: every 4 weeks x 3 times, every 6 weeks x 3, then up to every 8 weeks. This is what my Daughter's GI did when she had a 6 month lapse in her Remicade to kind of kick start it again.

Remicade does lose its effectiveness, probably moreso if you have had a long lapse in usage. My Daughter has been on it for just about 5 years now and it has lost its effectiveness during the past year and she started having to do double dose and do the infusions every 6-7 weeks instead of 8. This month she actually got a Triple dose of Remicade and is supposed to do 2 more times of Triple and then her GI will evaluate if she needs to switch to something else or continue on with Remicade back to double or possibly single doses.

Hope you find what works best for you!

Veteran Member

Date Joined May 2005
Total Posts : 1362
   Posted 3/27/2008 7:41 PM (GMT -6)   
I am not currently getting Remicade infusions. So far, antibodies haven't been an issue for me. I guess I am just at the point where I am ready to give myself a colectomy or do whatever it takes so I'm not sick anymore. I am slowly losing my independence. I thought that since Remicade has pretty much been a remission inducer, but doesn't maintain my remissions that it might work again.
"Of one thing I am certain, the body is not the measure of healing - peace is the measure. ~George Melton~"

Current Meds include:Sulfasalazine and Zofran. With a new doctor, forced to retry all the meds that haven't worked in the past :(

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, October 21, 2016 11:48 AM (GMT -6)
There are a total of 2,709,541 posts in 298,819 threads.
View Active Threads

Who's Online
This forum has 153337 registered members. Please welcome our newest member, ermagreco.
355 Guest(s), 8 Registered Member(s) are currently online.  Details
3HumpedCamel, compiler, Scaredy Cat, getting by, John1989, ravdeep, ks1905, Traveler

Follow on Facebook  Follow on Twitter  Follow on Pinterest

©1996-2016 LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer