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how long do you think your child will stay on remicade?


Thu, October 01, 2009 12:10 PM

Hello,

Do those of you with kids on remicade think your child will be on indefinitely?

Our GI plans to keep our 14 yo with Crohn's on remicade at least until he finishes growing (he had a year of delayed growth and weight loss before remicade, now he's growing really well).

But I wonder what we will do when he's 18 or 19...I assume he would stay on it if he is still doing well...but then does anyone ever stop it?  What does your GI think?  It has been a great (and necessary) drug for us, but long-term use still makes me nervous.

FPO sandpiper
Joined Oct 12, 2008

Mon, October 26, 2009 10:18 PM

 Reply posted for FriendlyCrohnie.

I am an adult with crohn's and in my experience Remicade was a lifesaver.  I was on it for an "indefinate" period of time, but once on it never wanted to go off! Was a million times better for me than everything else out there... I wouldn't be worried about getting "stuck" on it, you only get stuck if it works! Unfortunatly after nine years it stopped (antibodies). I am now on Humira which after about 5 months seems to be working well.  I wish your children the luck of getting stuck like i did :-)

FPO lah
Joined Oct 26, 2009

Tue, October 06, 2009 12:00 AM

 Reply posted for Concerned Mom.

Well, we are all hearing the same thing at least.  It makes sense when you consider what they say about people making antibodies if you stop...

The only people I know who came off remicade had it stop working, or developed a reaction, and they seem to have moved on to humira. 

FPO sandpiper
Joined Oct 12, 2008

Sun, October 04, 2009 8:00 PM

 Reply posted for sandpiper.

My daughter is not on Remicade yet but we have had conversations with her GI doctor about starting it.  The doctor said that once she started she would be on it indefinitely which is why it is so hard for me to think about starting because she is only 9 years old.   My impression is that once people start they stay on it until it stops working or  ... until a new drug comes along.

FPO concerned mom
Joined Jun 19, 2008

Fri, October 02, 2009 12:00 AM

 Reply posted for sandpiper.

 My son's GI specialist said he would be on Remicade for the rest of his life. My 14 yo son continues to grow and gain wt., on Remicade. It will be interesting to hear what other GI's are saying. Great question!

FPO 22
Joined Nov 16, 2008

Thu, October 01, 2009 12:00 AM

 Reply posted for sandpiper.

I don't have a child on Remicade, however I am currently on Remicade.  I was just diagnosed with Crohns this year in Feb and have had 3 treatments of Remicade so far.  My GI said I will be on it indefinitely also.

I have heard that long term, it stops working, so I don't know.  And if you stop for a period of time and then go back on it, I heard that people have a hard time and experience side effects because your body builds up antibodies so it takes longer to work.  I would ask more questions.  This disease is so individualized, everyone has different experiences.

Good luck to you and your child.  I wish you all the best.

FPO friendlycrohnie
Joined Sep 10, 2009

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