Remicade not completely working what do you think might happen next?

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mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 6/27/2009 4:40 PM (GMT -6)   
Hi Everyone,
I did well on Remicade on my 0.2,4,&6 infusions but, waiting for the 8th I became symptomatic in week 7. Now after my 8th infusion I can't seem to get back in to full remission again. Has anyone had this experience and if so what did you do? What did your doc's say? Just curious I am calling my doc on Monday but I just want an idea of what might be next. I have very little blood every once in a while but my food is going straight through looking the same as when it went in and I have terrible urgency!!!! I hate that this is back.


Melissa
Female, Left-sided colitis diagnosed at age 28 in 2001
Remicade stopped a major flare for me I am now off all meds except the remicade.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 6/27/2009 5:08 PM (GMT -6)   
maybe look into surgery?
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 6/27/2009 7:24 PM (GMT -6)   
For me, I started having symptoms in week 7, so my GI said I had two options - increase my dosage for my regular 8 week intervals, or increase the frequency of the infusions to every 6 weeks. He's opted to increase the frequency for now.

Remicade is usually the last medicinal option before surgery, so be prepared for your doc to mention that.

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/27/2009 8:05 PM (GMT -6)   
Another option is switching to Humira.  It will be fully approved for UC in a few months and is currently approved for cases where Remicade fails.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, maybe surgery this year soon
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/27/2009 8:54 PM (GMT -6)   

If you want to break the cycle of illness once and for all surgery is your next best option.  You might consider a consultation with a CR surgeon to ask questions and learn about your options.  I am sorry Remicade is not working for you.

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


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 6/27/2009 9:44 PM (GMT -6)   
My doc told me that Humira is the alternative for those who don't respond to Remicade. I'm one of the ones who didn't respond to Remicade. See if yoiur doc would work it out to put you on it.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 6/28/2009 12:45 AM (GMT -6)   
After my third Remicade infusion, over the course of a few weeks, my symptoms came back worse than they had ever been and I ended up admitted to the hospital having a GI tell me I needed an ileostomy. The idea freaked me out and I wanted to go home. The surgeon agreed to do me as an outpatient in 2-3 weeks. I made it 13 days before heading back to the ER and he did the ileostomy the next day. It would never be my first choice in life but not being in pain and not running to the toilet over 20 times a day is worth it. I will have a j-pouch in a few months and takedown at the end of the year.

I don't know how bad things are for you and if you can try Humira next but you are nearing the end of the treatment road. Your GI is probably going to mention surgery at some point. Best wishes to you.

Heather

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/28/2009 1:57 AM (GMT -6)   
i had remi fail for me and went to the GI and told him i wanted surgery now, best thing i ever did!

this ileo makes life great, lol.
I know it seems awful to have surgery, but its sooo worth it, whether you have a jpouch or a perm ileo you will get your life back, med free and UC free!
I was scared too, but i just couldnt take missing thigns anymore
And now my life is awesome, my energy is back. Its 4am now, i have been up since 9am, and i am still going, lol. granted i am slightly tipsy, lol but still kicking! can you imagine ever doing that on all the UC meds? iwas lucky to stay awake 5 hours before surgery.
Anyway, if you dr mentions surgery. please be aware that it is not the end of the world or a horrble thing, i know it comes across that way to alot of people, it did to me at first too
good luck!
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