options when Remicade stops working

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jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 8/18/2008 5:12 PM (GMT -6)   
idea

I started Remicade in October 07 and it started working in November-- Went into remission in December until late March. I have been in a flare since then. Still on Remicade, Lialda and Rowasa enemas. The flare hasn't gotten any worse until about a month ago. I go to the bathroom 8-10 times and the URGENCY is killing me. A couple of times I haven't made it to the bathroom- horrible!!!

I am thinking that Remicade has stopped working. I am going to the doctor next week--- I was on 6MP for a short time but the doctor is afraid to put me back on that.

what are some options after Remicade???? Who has become immune to Remicade and had to opt for other treatments?

Thanks
Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, Lialda, Sythroid, Protonix, Rowasa suspension

Remicade 9th infusion- Sept. 9th


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5181
   Posted 8/19/2008 10:48 AM (GMT -6)   
Were you ever treated with cyclosporine (IV)? Another member here who has benefitted from it wrote that Dr. Daniel Present, one of the most knowledgeable gastroenterologists treating IBD in the U.S., calls it "the A-bomb for UC". / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/19/2008 11:23 AM (GMT -6)   
I'm curious if there's other options too. with my kidney failure and trouble with the standard drugs they said Remicade is what I'm left with. . . if that doesn't work am I stuck with surgery as my only option?
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Starting Remicade 8/21 if insurance approves - Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 


sushik
Regular Member


Date Joined Aug 2008
Total Posts : 35
   Posted 8/19/2008 12:44 PM (GMT -6)   
Hi jblue65,

I know I say this on a lot of threads, but make sure to get a stool sample test for pathogens. It could be you've contracted c. diff. It's getting more and more common especially if you visit hospitals often. I got it a couple months ago, and the symptoms were EXACTLY the same as my UC flares.
31 yr old male
Diagnosed: 7/07 - UC - Pancolitis
Current Meds: 2 Rowasa enemas/day ; 6 Asacol / day


AbbyCatG
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 8/19/2008 3:11 PM (GMT -6)   
 
I am in a similar situation- Remi worked for awhile, but started flaring- so I was put back on pred and going to have my Remi bumped up to the 10 mg per kg dose for my next infusion in 9/08.  My GI tells me that if Remi fails that my two options are (1) Humira (very expensive and may or may not be covered by insurance b/c it is not FDA approved for treatment of UC, also questionable re: how effective it is in controlling UC) or (2) surgery.   Those are my options. 
 
While I am not thrilled with my options, those are the ones that I have.  Medications have provided me with only temporary periods of relief from UC and diet changes/ probiotics have not made an appreciable difference.  I have been educating myself on the surgery option and lurking on the ostomy board here, j-pouch.org, uoaa.org, etc. and as a result I have a more positive and hopeful attitude towards the possibility of surgery.   The idea of being "cured" of UC sounds blissful at this point.
 
Stay positive  :-)   research all the treatment options out there: meds, probiotics, clinical trials, diet, alternative medicine, surgery, etc. and try what makes sense to you and what you are comfortable trying.  Good luck to you.
 
 
 
 
Diagnosed UC January 2006
 
 Colazal 4x 3x per day
 Remicade since 1/07
 Remicade Remission since late February 2007 !!
 Flare while on Remicade 3/08 & 7/08
 Prednisone 30 mg (tapering 5mg every 2 wks)
 Multi-vitamin daily
 Calcium 1200 mg daily
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/19/2008 4:04 PM (GMT -6)   
Yup, ditto to what AbbeyCat said...I've been on the 10mgs/kg every 6 weeks dose of remicade for a while now. I can't remember off the top of my head how long, but it's been about 6 months at that dose. Once that stops, it's Humira or surgery. Cyclosporine can put one in remission, but it's a rescue med- you get it to get you well enough for surgery, that;s about it. Not a maintenance med, at all.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5181
   Posted 8/20/2008 6:20 PM (GMT -6)   
There are 2 members posting here who've been treated successfully with Cyclosporine then went to other oral meds to keep in remission. One male, one female. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

milkman
New Member


Date Joined Jul 2008
Total Posts : 19
   Posted 8/20/2008 6:57 PM (GMT -6)   
Daughter had severe colitis for 2 years major flare,tried asacol,colazal,lialda,6mp,methotrexate,Humira the only relief was from steroids.She decided and on 7/8/08 we had the first step of surgery after 16 days in hospital and two trips to emergency room for blockages she is starting to gain some steam,we had pouch tested and is scheduled in Oct for drop down surgery, its been a battle but she has named her stoma stan and has adapted well to it  she is a 23 year old student and doesnot regret her choice after  2 years of feeling lousy she sees a light getting brighter,talk to people on both side of the fence and do what is best for you,good luck

murphi
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/10/2008 10:02 PM (GMT -6)   
I had Ulcerative Colitis for Years and tried many medications, prednisone, 6-MP, asacol etc.  I never used remicade however I would get to a point where the prednisone wouldnt even work well unless I was on a very high dose 60mg per day, then taper down after my flare up started to subside.  I finally had surgury.  A proctocolectomy with an ileoanal anastaomoses with a J-pouch.  It cured my colitis and was the best thing I ever did.  Find a good colorectal surgeon and see if this could be an option for you if your colitis is severe.  My Dr. trained at the Mayo clinic!
 

Blue587
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/11/2008 12:16 PM (GMT -6)   
I have been on remicade for about a year (started 8/07) and stoped only after 4 infusions because I become tolerant to it. I was told I could go on Humira but I doubt that will work. Both drugs work in a similar way that only an infusion or two might be effective. Both are tnf-alpha receptor antagonists. 6-mp is a good idea if you haven't gone through that mess already. Other than that...there really isnt anything, is there? Maybe Enbrel or something. They are all in the same class of drugs so..it might be the same. I just thought it'd be nice to throw that out there (im learning about drug tolerances in my pharmacotherapeutics class right now)
-Diagnosed Fall '05. UC and PSC
-Current Rx: Asacol 6 BID; Urso Forte 1 BID; Vitamin B Complex; Ferrous Sulfate 65mg


lightlove
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/11/2008 1:24 PM (GMT -6)   
Has anyone heard much about Boswella? I keep seeing postings around that it helps colitis.

What are the infusions some of you are talking about?

I just broke out in a terrible rash all over my body. I've been on and off of asacol for years and now it looks like I am suddenly having a reaction to it. I have hives all over my back abdomen, it's really terrible.
So they told me to stop the asacol. I have my first meeting with a naturopath today.

Also I'm taking acidop, bifidus probiotics in the billions... big difference than taking the smaller doses. You can get it in packges of 250 billion.
Juicing cabbage juice to take down inflamation. It does work.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 9/12/2008 8:38 AM (GMT -6)   
Thanks for all of you ideas... I have been tested for different things including parasites. I have been progressively worse over the past 2 weeks. I will be going to the doctor 9.24 and have another Remicade infusion the 30th... TOday I woke up with sores in my mouth also which I get when I am really sick. I am going 15-20 times always with blood. Everything I eat---- makes me go. Oh well- somehow I am managing to work full time as a teacher- I don't eat until I get home.
Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, Lialda, Sythroid, Protonix, Rowasa suspension

Remicade 9th infusion- Sept. 9th


Blue587
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/12/2008 4:34 PM (GMT -6)   
Boswellia is not proven to work, like many of the other natural methods of helping UC. It has some anti inflammatory properties, but I dont recommend starting any herbal supplements w/o consulting your doctor. Especially when seem to be having some sort of allergic response to your current meds.
-Diagnosed Fall '05. UC and PSC
-Current Rx: Asacol 6 BID; Urso Forte 1 BID; Vitamin B Complex; Ferrous Sulfate 65mg

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