What is your reason for not doing Remicade?

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Canadian Chick
Regular Member

Date Joined May 2009
Total Posts : 60
   Posted 6/26/2009 8:56 PM (GMT -6)   
I don't want to start a debate on Remicade, I'm just curious to know from those of you who refuse to take it, why not? There is so much information out there on the Internet, I'm just trying to figure out my opinion on it... And I think other people's opinions will help.
Thank you.

Regular Member

Date Joined Nov 2008
Total Posts : 63
   Posted 6/26/2009 10:01 PM (GMT -6)   
I think it increases chances of lymphoma cancer but at least lymphoma has one of the highest cure rates if I remember right. I'm taking Humira and would be worried about taking it any more than a couple years, although it's not working for me and surgery is in the near future.

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Date Joined Mar 2009
Total Posts : 54
   Posted 6/26/2009 10:21 PM (GMT -6)   

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Date Joined Aug 2008
Total Posts : 5975
   Posted 6/27/2009 4:06 AM (GMT -6)   
     My reason is more involved.  I worked in a hospital lab back in the 60's and was exposed to the TB virus.  My friend and I went on a European trip back in 67 and had to have the skin patche test.  Mine tested positive and I had to undergo a chest xray, etc.  It showed no active TB but the doctor told me at the time that my system is harboring the virus somewhere.  I am not contagious but if I should receive Remicade there is a chance of activating that virus and it actually could kill me.  There is some controversy about this.  My present GI doctor has been pushing Remicade on me for the past two years.  However, his associate, who took care of me in the hospital last year, said "absolutely..NO REMICADE".  Apparently his associate had a patient expire while on Remicade who was also harboring the TB virus.  It is a real problem here since the 6MP seems to have stopped helping, but now the doctor increased the dose to 100mgm.  Right now I will just sit tight and see if I can manage to stay out of the hospital with this present flare (just got over a flare last Nov).  Oh and when I saw my GI last Tuesday for the results of my sigmoidoscope, he did admit to me he heard of two cases at the Univ of PA hospital who took Remicade WHILE on 6MP with fatal results. So there ya have it.  Good enough reasons for me.
    If Remicade was the CURE, which it certainly is not.  I may just have given it a shot since I am a lot older than most of you (63 in August).  But not quite willing to throw in the towel just yet.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.

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Date Joined May 2003
Total Posts : 297
   Posted 6/27/2009 7:02 AM (GMT -6)   
I have insurance, but it is still way too expensive. Otherwise, it works great for me.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: Mesalamine rectal meds, back on 100 mg Azathioprine

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Date Joined Jun 2008
Total Posts : 610
   Posted 6/27/2009 8:30 AM (GMT -6)   
All things being equal, if I were in my seventies or older, I would probably opt for Remicade. If I needed Remicade to act as a bridge to surgery, I would probably take it. As an open-ended treatment for uc, I refuse.

-- It's too new.
-- The side effects are disproportionately severe.
-- It's extremely inconvenient.
-- Even with excellent health insurance, I cannot in good conscience undertake a therapy that may well cost millions of dollars -- and it doesn't cure the disease.

I would rather have surgery than take Remicade.

Regular Member

Date Joined Jan 2009
Total Posts : 307
   Posted 6/27/2009 8:39 AM (GMT -6)   
I feel like like Remicade is the last option before surgery and I dont want to be at that stage yet, I've only had UC symptoms for about a year now.  I also feel like its to new to the market, I think it's only been around since 98' so there isnt much data about long term side affects that make me feel comfortable about injecting it in to me for 2 hours at a time.
Also, it seems like its only a bridge to surgery, I mean how long could you actually stay on such a potent treatment like that??
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Diagnosed with PSC: 3/9 --now taking Urso
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09 - 100mg - started 6/11/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
~~~Praying for a cure~~~~

New Member

Date Joined Dec 2007
Total Posts : 14
   Posted 6/27/2009 11:26 AM (GMT -6)   
I had an allergic reaction to remicade(low blood pressure, swollen eyes, numb lips) during an infusion in 2008. I have since had a severe flare and nothing was working to get it under control. I decided to try the remicade again and I was given meds before the infusion(plus the nurse said a prayer for me) and was closely monitored. No allergic reaction this time. It has been 5 days since the infusion and I am feeling some better. I was on the Humira for 5 months and it didn't help me at all. The remicade is the only thing that gets my flares under control.

Regular Member

Date Joined Mar 2008
Total Posts : 113
   Posted 6/27/2009 12:22 PM (GMT -6)   
i'm on the fence about it too. My doc and I had a long talk on Thursday about my options. One thing he said helped a bit: "Yes, you have a 6x larger chance of getting cancer. But, anyone on the street has a 1 in 10,000 chance of getting cancer. Remicade raises it to 6 in 10,000" Obviously, not good, but it did put it into perspective for me.

he is a bit concerned about my age (33) and what 40+ years of Remicade would do to me.
Diagnosed w/ UC in August 2007
Was in remission for almost one year (using only Lialda 4xday)
Rowasa and Canasa did not work.
Current status: In Flare since May 2009

4 Lialda/day maintenance, healthy diet
Starting Colal-Pred trial May 18, 2009, ended when hospitalized two weeks later. Also diagnosed with C. Diff while in hospital.
Currently taking Vancomycin, 60mg Prednisone (start tapering soon) and doc wants to discuss MP6.

Regular Member

Date Joined Feb 2009
Total Posts : 114
   Posted 6/27/2009 5:10 PM (GMT -6)   
For some of us it's either surgery or Remicade. It's that simple.

Many of you have milder forms of UC. Those of use with severe UC ( Pancolitis ), Remicade is a lifesaver...or colon saver.

I am concerned about side effects. Prednisone has done far worse by my body so far then Remicade ( at least as I can tell..who knows whats really going on ). Perhaps in a year or so I'll opt for surgery but until that time I'll ride the Remi in hopes of some new discoveries in the C&C field.
Diagnosed U.Proctitis 07

Flare Feb 09 - Diagnosed with Severe Pancolitis
Remicade, 50mg Prednisone, Cortenema PM, 1g 5 ASA suppository AM

Veteran Member

Date Joined Aug 2008
Total Posts : 903
   Posted 6/27/2009 6:01 PM (GMT -6)   
I'm allergic to Remicade. It's a horrible reaction, makes me go major blood, and almost into anaphalyctic shock. Best for me to stay away from that drug. Humira works real well for me.
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

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