Remicade time frame?

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73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 4/23/2009 10:05 AM (GMT -7)   
My daughter may still have to resort to Remicade at some point if things don't work out with her current treatment. I've been trying to gather some information through here mostly. I'm familiar with the problem of building up anti-bodies that will result in having to terminate use. It seems from what I've read, most only get about 1-2 yrs. before this starts to happen. 
 
Is there anyone who's had longterm success with Remicade? Is my understanding typical, or is it possible to get years of benefit from this drug? 
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 4/23/2009 11:05 AM (GMT -7)   
I have just started Remicade (2 treatments so far), but I know from speaking with the nurse who administers it to me that she has patients who have been on it for several years, far longer than 1-2. Everyone is different; no 2 Crohn's sufferers seem to be the same or have the same results with meds. Hope that helps!
32 year old female... diagnosed with Crohn's at age 16, then with proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, 20mg Prednisone, Bentyl and Percoset as needed... just started Remicade


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/23/2009 11:14 AM (GMT -7)   
I believe Teddybearwieser was on it for over 5-6 years. And I have seen others who have been on it even longer. Many have had great success with this med. Hopefully they will be along soon.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 4/23/2009 11:16 AM (GMT -7)   
I'm doing well at 2 years. Hope that it keeps going for a lot longer.
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 4/23/2009 3:37 PM (GMT -7)   
I took remicade for 6 & 1/2 years. For the last 9 months of that time frame it started to lose it's effectiveness on me and it took me that long to figure it out. I spent most of my Remicade life taking the 10mg/kg dose and had it as frequently as every 5 weeks for a long time (2 years?) and as stretched out as every 8 weeks, but not for very long. Usually I was getting infusions every 6 weeks.
I have since switched to Humira and have been on that for 9 months and so far so good.

westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 4/24/2009 5:44 AM (GMT -7)   
Tom,
I have the same worries as you. Remicade is next on the list for me.
My Imuran seemed to work for 3 weeks tops. I am progressively getting worse. My GI is on vacation though so I don't go see him for 2 weeks. But He has told me has had patients that have been on Remicade for many years, so I am trying to stay positive about it.
Right now I am wondering how long it is going to take to even get started on Remi as I have to be preapproved by my insurance but my GI has to fill out the paperwork....

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 4/24/2009 5:29 PM (GMT -7)   

Hi Tanya,

Hopefully Remicade will be the best alternative for you if indeed you decide to go that route. Have you been on Imuran long enough to get a full effect? Are you sure the clinical dose is enough for you? I'm just thinking that you want to make sure the Imuran is definitely not working before opting for alternatives. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/24/2009 6:05 PM (GMT -7)   
I have been on it for 4 1/2 yrs.  Still going stong!  I still go every 8 weeks but have increased my dose...it's not doubled, but just taking half more.   And I'm praying it doesn't stop working anytime soon!  I'm prone to fistulas and don't know what I'm going to do when it does stop working.

westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 4/24/2009 8:42 PM (GMT -7)   
Tom,
I have been on 150mg of Imuran for 10 weeks. I felt pretty good weeks 4-6 then slowly got worse. I am worse now than when I started the imuran. Prednisone has done nothing for me so I doubt a burst of that will reallly work either. I have come to terms with trying Remicade. It is a bit disheartening as I had high hopes of acheiving remission with my surgery like I did with my first surgery, then hopes for it with the Imuran. I am at a point that I just want this to be done so I will go with the big guns. 1 1/2 years of flaring plus my aweful surgery experience mixed in there, has beat me down.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair

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