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To remicade or not to remicade?

D

Damos

So my doc wants to put me on remicade. Overall my symptoms aren't too bad. I go to the bathroom somewhere between 3 -7 times a day. Some blood maybe a third of the time. I have been on sulfasalazine for the past 7 years but I'm not sure it really ever did much.

My doc wants to put me on remicade mainly because most of my inflammation has been in the rectal area which he says can lead to complications. I'm pretty reticent to go on it because I just don't like the idea of suppressing my immune system. I've gotten good results from cortifoam but my doc says I can't be on it for more than a month at a time. I convinced him to try meslamine enemas but that doesn't seem to have had any affect.

Any thoughts on what I might do would be appreciated. There is an antiMAP trial in my area which I thought might be an alternative.
 
Ian_H

Ian_H

Location
Charleston,
I went on Remicade about 8 months ago and am doing much better. I would have about 4 major flares a year which is not as bas as it could be. I havnt had one since starting Remicade. I was reluctant to go on it due to immunosupression and I was already on Imuran but i get no more sick than my girlfriend and others do with normal immune systems. If I were you I would try to get the antimap trail before starting Remicade as you cant be on it for that treatment at least I think you cant. If that dosnt happen I would go for the Remicade :)

Best of Luck!
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
I have been on Remicade for over 10 years now and have traditionally been one of the HEALTHIEST people in my family. If you think of Remicade being an immunosuppressant, remember that your immune system is already pretty much in overdrive, and what the meds are doing is bringing it back down toward a more normal level. Yes, it may lower it more that other people, but in my experience I haven't been any sicker than anyone else around me - and I work in a VERY public arena with germs everywhere!

Also, remember that as long as you have inflammation going on, you are doing damage....in my case the meds were not working again and again, I had to move up to stronger ones and eventually ended up with fistulizing disease.....trust me, you DON'T want to go through that if you can avoid it!

Remicade absolutely allows me to live a normal, full life. Yes, I have to get an infusion every 8 weeks, but I will take that in exchange for not having been hospitalized since 2004, and having my multiple fistulas close up!!!!!

It is a very personal choice, but one that should be made with as much research as possible, including finding out the success stories as well as the not-so-successful ones as they are out there.
 
Ian_H

Ian_H

Location
Charleston,
Lisa said:
I have been on Remicade for over 10 years now and have traditionally been one of the HEALTHIEST people in my family. If you think of Remicade being an immunosuppressant, remember that your immune system is already pretty much in overdrive, and what the meds are doing is bringing it back down toward a more normal level. Yes, it may lower it more that other people, but in my experience I haven't been any sicker than anyone else around me - and I work in a VERY public arena with germs everywhere!

Also, remember that as long as you have inflammation going on, you are doing damage....in my case the meds were not working again and again, I had to move up to stronger ones and eventually ended up with fistulizing disease.....trust me, you DON'T want to go through that if you can avoid it!

Remicade absolutely allows me to live a normal, full life. Yes, I have to get an infusion every 8 weeks, but I will take that in exchange for not having been hospitalized since 2004, and having my multiple fistulas close up!!!!!

It is a very personal choice, but one that should be made with as much research as possible, including finding out the success stories as well as the not-so-successful ones as they are out there.
Click to expand...
Agree!!! 100%
 
my little penguin

my little penguin

Moderator
Staff member
Ds was on remicade in the 3rd grade and has been on humira for the past three years so four years on biologics
Elementary school is where everyone is sick
No extra illness or colds
Definitely less kid sick than my other kiddo

Biologics let him be a kid and not a kid who is limited by crohns
 
Silverbird

Silverbird

Location
The Netherlands
Lisa: definitely agree :)

I've never even had a cold since I'm on Remicade (and also years before that). I did have some nasty virus that looked like flue but wasn't, but that was probably just a 'coincidence', or whatever. ;)
I'm only on Remicade for my fistula, my bowels are also relatively calm. It's not doing too much, but like my doc said: the disease is not getting worse. Haven't had an abscess since I'm on Remicade and my tummy is also not getting worse :)
 
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