What's next after remicade?

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Wisconsin
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/18/2009 9:19 PM (GMT -6)   
I had my first GI issues in 1995. After a Barium enmea and coloscopy, I was told I hadnon specific colitis. In 2000, I had more issues and was diagnosed with UC. I began Asacol but stopped it after things got better. In 2005, I had severe issues, 12-14 x a day with blood, mucus, bloating and pain plus the inability to control things. I was doubled on the Asacol and after that didn't work did the Predisone which didn't help. Finally the Remicade came through. I  get it every 8 weeks and it has changed my life. I had my first reaction (flushed, difficulty breating) last dose and it was determined the nurse ran the IV too fast. BUt now, here's my question...if I get another reaction to the remicade, I'm done and I don't know what's next.
 
Any ideas? I'm diagnosed with UC for over 8 years, and have a family history of colon cancer.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/18/2009 9:34 PM (GMT -6)   
Some people on this forum have tried Humira after Remicade...but it has not been approved to treat UC yet, but some people can still get it. Remicade just did not make a difference for me. I saw some changes after my first two infusions, but by my third and fourth there was nothing. So my fifth came just four weeks after my fourth just as a last chance effort to get me through until my surgery, which was two week ago this Friday. : )

Your GI should really be the one discussing options with you. Each doctor is different with his/her beliefs and practices. They may have some additional tricks of their sleeve, but normally if someone fails the level of medications such as Remicade surgery is the next step. I do hope you can find another option if surgery is not something you're considering.

Good luck to you!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 2/18/2009 10:20 PM (GMT -6)   
All you've tried is asacol, pred and remicade? I'm kind of out of touch with medications right now because I've been in remission for some time but I tried everything...asacol, pred, entocort, remicade, colazal, sulfsalazine, 6-mp, hydrocortisone supps. Best thing to do is talk to your GI. Medications can be determined by where your inflammation is.


ps. maybe add a signature in the control panel section so we know a little bit about what meds you've tried :)
Sam(antha)
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"Life is what happens when you are busy making other plans"
John Lennon


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/19/2009 8:05 AM (GMT -6)   
With your resistance to meds and your family history of colon cancer you should at minimum be researching surgical options. That's probably not what you want to hear but it's best to get educated and know in advance what your choices are so you can be prepared with a decision. Not all CR surgeons do all surgeries so this takes time to get informed.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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