What's the deal with Remicade?

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gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 6/10/2010 12:56 PM (GMT -7)   
I've noticed a slight worsening in my condition since I had my last Remicade infusion on May 24th. I'm due for another one on June 17th.
Why do people get worse like this? Does Remicade take a long time to wear off, but eventually wears off?
What is the Remicade actually doing to our bodies? Can anybody explain it in layman's terms, so that I can understand it enough to explain it to my family?
I still think it's an amazing drug, but I just want to understand it better.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
The surgeon said it is inoperable and so I start Remicade on May 7th.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 6/10/2010 3:22 PM (GMT -7)   
I took remicade for 6+ years. I had to switch to Humira because Remicade was losing it's effectiveness. Yes, it can wear off. The trick is to figure out when it starts to wear off and then schedule your infusions so that it never has a chance to wear off, thus keeping you out of a flare. I used to get my infusions ever 4 weeks for a period of time, but even then I would only go 3 weeks before I started noticing symptoms. As far as what it does to your body - this is the easy explanation. TNF-a (tumor necrosis factor - alpha) is an inflammatory property. It's what makes you flare up and is a cause of inflammation. Remicade has anti-TNF-a so it blocks the inflammation or keeps the inflammation from happening so that your disease will stay quiet. Maybe someone will have something to add, but this is my understanding of it and I kept it as simple as I could.

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 6/12/2010 9:36 AM (GMT -7)   
Sounds like you are still in the 3 loading doses phase of Remicade. It took the loading doses and several regular 8 week doses before my Daughter felt better and could actually claim remission along with Asacol and Imuran.

My Daughter has been on Remicade for 7 years. Once single dose became ineffective she went on to double dose and when that became ineffective she has been on triple (yes TRIPLE) doses
for quite some time. It still works pretty well, but is waning. As her infusion time closes in she suffers terrible arthritis and lupus like symptoms. Her GI just is not ready to switch her to Humira yet for whatever his reason is. She was told by her infusion Nurse that some patients go as far as Quadruple dose but that is a place she doesn't want to go as the Triple dose makes her squeemy enough.

She has had dose schedules anywhere for 4 weeks apart to 12 weeks apart with 8 weeks being the average.

Hope Remicade gets to working at therapeutic levels for you soon.

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/12/2010 2:32 PM (GMT -7)   
TNF alpha is protein made by immune cells that acts as a signalling molecule to drive inflammation. Remicade is another protein (an antibody) that binds to TNF alpha and takes it out of circulation so it can't drive the inflammatory process.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/12/2010 3:51 PM (GMT -7)   
jpnutritionfirst: Ok, so with TNF molecules being rendered ineffective by Remicade or whatever - it seems that people on the TNF drugs eventually lose the quality of response they once had. Is the immune system sensitized rendering the drug increasing ineffective or are the symptoms and rebound issues related to advancing disease? This is at least my take on it. Haven't spent much time in the TNF literature yet. Been busy boning up on Crohn's and trying to not go crazy. Sure that will be next (crazy).
newby


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/12/2010 7:59 PM (GMT -7)   
TNF loses efficacy because once you introduce any type of foreign protein into your body, your immune system starts to make antibodies against that protein. Antibodies are proteins that are like markers for destruction. Once they bind to whatever they were made to bind to, that target (called an antigen) is destroyed by an immune cell engulfing the complex of antigen and antibody. So you will start to make antibodies against the drug and clear it out faster. I know this sounds confusing since the drug itself is an antibody against TNF. Thankfully many people do experience long term remissions with remicade if they do get an initial response.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/12/2010 9:30 PM (GMT -7)   
i've had my 1st three loasing doses and haven't noticed much benefit at all yet...last one was May 17th so I guess I have 5 weeks until the next...keeping my fingers crossed- hoped i'd be one of the ones who gets some relief right off the bat but i guess we can't have everything. if it works and i can get a few good years out of it that would be nice.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/12/2010 10:01 PM (GMT -7)   
i know what you're saying man, after my first few doses i didn't notice much at all. i'm actually not sure if i got any benefit from remicade at all since i started doing SCD almost at the same time of starting it. it probably was offering some benefit. i'm since discontinued remicade while still staying on the SCD and nothing has happened yet.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/12/2010 10:05 PM (GMT -7)   
i figure i'll give it a bit longer- especially since my yearly out of pocket for ins is met so don't have to worry about the $ factor until next year. doc was talking about doubling dose if we don't see anything happen over the next few months...
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.

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