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Crohn's Disease Forum » Parents of Kids with IBD » Should we try Remicade


 
04-08-2011, 07:47 PM   #1
Saphira
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Should we try Remicade

Our Dr suggested today we try Remicade for Brandon (9 years old). He has been in a flare of some form of IBD since Thanksgiving, and tried Entocort, Prednisone and still on Asacol Omeprazole and Levsin for pain. Only mild blood markers, and mild biopsy changes but sever pain and frequency of BM. Cant seem to wean off prednisone.
Brandon asked me "Why can't I just be normal"?
Remicade was offered by the GI, but I am nervous... What have other parents done.
Trina
04-08-2011, 09:00 PM   #2
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Trina, have you looked through the Remicade club under the Treatment forum. I've only read bits and pieces of it but for most it seems Remi has done wonders. There will always be those who don't respond or have bad reactions but the overall trend with it seems to be positive to me. Every med you try for Brandon will carry some risk. I'm sure you've tried every thing diet wise under the sun by now!! If nothing else is working, well no one can tell you, but if it was me and my son, I'd try anything to get him in remission.
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04-09-2011, 12:21 PM   #3
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Trina,
My daughter (11) was on Remicade for a year and a half and she did really well on it for a long time. She was diagnosed at 8 and her first treatment was an NG tube for 6 weeks and an immediate start to Remicade. She responded really quickly and went into remission. After about 6 months, her doctor wanted to try her on azathioprine. She was on both for awhile to allow the azathioprine to start to work. She looked great at 10 weeks post her last remicade and then at 12 weeks when all of the remicade was out of her system she started to flare again. We went back to the remicade and although it "worked", it never worked as effectively as it did before. Over time we had to shorten the time between doses and increase the amount of medication she was getting. Throughout all of this, my daughter was a trooper. She never minded getting the remicade infusions and actually started to look forward to them because she would get a burst of energy from them.
We've since moved on to other medications...failed a Cimzia trial, and are now trying to get Humira to work. Although these meds are only a quick shot, she still preferred the infusions because they didn't hurt at all and they don't give her that boost. We had the longest success on Remicade and given what I know now about how she responds to Cimzia, perhaps we would have stayed on Remicade longer. We're still keeping our fingers crossed that Humira is going to work for us, but I have my doubts.
I wish you the best of luck in your decision!
Carol
04-09-2011, 01:11 PM   #4
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Thanks Carol,
My biggest problem is not having a true diagnosis. Brandon was diagnosed 2 years ago with CD and then we swithced to a new Doc, and he was not sure... so we did the prometheus test nad it siad pattern not consistent with IBD. If it isn't IBD what is it, and should I really expose my child to a drug formed from mice antibodies and cancer cells if he has something different?? Arghh.... Just not sure...
Trina
04-16-2011, 08:26 AM   #5
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My daughter has been on Remicade since the end of December. Now her treatments are every 8 weeks and we have just been given the all clear sign that she is in REMISSION!!!! So far no side effects from the Remicade. Not exactly sure what got her to this point, she has been on Pentasa, Prednisone and Remicade. But it works for her so far. If it keeps her in remission, we will keep on going with it.
04-16-2011, 11:30 AM   #6
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Welcome Kat!! What's your girl's name and age? Glad to have you aboard!
04-16-2011, 09:30 PM   #7
Max's Mom
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Hi! My son has been on Remicade for almost a year now and he is doing great.He is 10. Treatments were hard at first, he would roll up to a ball and cry and they would have to hold him down. But now he says he can't feel a thing(when they put in the IV) and he looks forward to the bacon and treats he gets during treatment. At first I was not happy about giving him this powerful drug, but we really didn't have a choice. I hope it will work for a long time.Good luck.
04-16-2011, 09:35 PM   #8
Max's Mom
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I remember Max also talking about wanting to feel normal. Not that long ago he said that now he is just like everybody else. I guess, this is a good thing.
04-16-2011, 10:23 PM   #9
Brian'sMom
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My son was on Remicade, but unfortunately was one of the few that had an allergic reaction to it. The 3 times he had the infusion, he didn't like the thought of the IV, but always said it didn't hurt. He then watched movies and ate food. He is now on Humira and is doing great. He just turned 11. I was also really scared to start these meds...if you search my posts you'll see that I was a wreck with worry. I will always remember something my son's GI doctor told me when I was fighting to move on to a 'biologic' drug. She said, "Why are you so willing to keep giving your son prednisone but refuse this drug?" She said prednisone has side effects that are bad too and non reversible. That really made me think. She said these biologic meds have less side effects in her opinion. My son has said "I'm normal now...just like everyone else in school" . I also think the longer we keep our young kids' intestines from inflammation and damage the better off they'll be when they are older. I believe they will come up with something even better someday...and our kids' intestines will be healthy because they've been in remission. Our GI doc said this is "new school" approach and top down approach. I still hate 'shot day', but its quick, we do it at home, and my son says it doesn't hurt...he says it feels kinda wierd and then numb. Within minutes he's running around like nothing happened. He has also said the icing his leg is worse than the shot! Before, when he was flaring, he seemed to get sick often...now he never gets sick. He's been around kids with colds, etc...and he doesn't catch it- so I think being healthy in his gut is making him stronger. On the CCFA site there is an article about the risks vs benefits of IBD drugs...I posted the link awhile back. I'll look for it.
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symptoms 2005, official dx 6/2010

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Vedolizumab 8-8-14
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Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-16-2011, 10:26 PM   #10
Brian'sMom
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Here's the link. its called:Balancing the Risks and Benefits of Treatment
For Inflammatory Bowel Diseases
http://www.ccfa.org/webcasts/Risk%20...Transcript.pdf
04-17-2011, 06:20 PM   #11
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My son was diagnosed last fall and immediately started remicade since he was so sick. Remicade immediately put him in remission. I could not believe how quickly it worked. We called it the magic drug because it was like he did not have Crohn's at all. But unfortunately we just found out last week that he has developed antibodies against it, so we are in the process of getting cimzia.
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Previous meds: Prednisone, Remicade
Current meds: Started Methotrexate 15 mg 4/27/11 then went down to 7.5 mg 9/21/11; insurance company rejected Cimzia; Humira approved 5/20 - first 2 injections 5/25
04-17-2011, 09:07 PM   #12
Brian'sMom
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Is Cimzia a shot like Humira. Just curious...why didn't they do Humira next. I don't know much about Cimzia.
04-18-2011, 08:06 AM   #13
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Yes, cimzia is a shot. The dr said the humira is a very painful shot because it stings while it's being given. Seems like I read on here that it's not though. My son's practice does not have any children on humira.
04-18-2011, 09:06 AM   #14
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Last edited by FLMom; 08-19-2012 at 10:03 PM.
04-18-2011, 09:46 AM   #15
Brian'sMom
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My son doesn't look forward to shot day either. They seem to come so quickly! He tells me it doesn't really hurt...but he "blows out about 50 imaginary candles" during the few seconds the drug is entering his thigh. I think it going in so quickly is what is uncomfortable. My son is the type tho to tell me "Mom...its fine...stop worrying...Its over...it didn't hurt" He doesn't like to see a worry look in my eyes. The quote I see over and over on this forum is sooo the truth..."It is what it is". Not a choice to it...not doing anything would be far worse and these kids know that all too well.
04-25-2011, 09:04 PM   #16
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Thanks everyone, Decision made. Brandon was vomiting with blood in it on Thursday when we dropped to 15mg of prednisone, so we had to put the steroids back up. Weighing up the side effects of prednisone versus Remicade, I think Remicade is the best choice now. So Wednesday is the day....

I'll let you know how it goes..
Trina
04-25-2011, 09:13 PM   #17
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Good luck with your son and I really hope this helps him. So hard to see a child suffer. Hang in there both of you!
04-26-2011, 05:30 AM   #18
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I hope Remi is the one for Brandon, Trina! Get that boy back in school and loving life again!! Good luck and let us know!!
04-27-2011, 02:41 AM   #19
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Good luck

I was on remicade for a year , going back on it soon hopefully. It was AMAZING. I was going through a really bad , long flare to the point where IV steroids didnt help. I was getting infections all the time , couldn't eat, I was anemic and too poorly to get out of bed except for to run to the toilet 20+ times a day. Even the 20 min car ride to the hospital to be admitted for remicade was a genuine struggle!

As soon as I had remicade I went into instant remission , it was like a miracle! That night I went home and had a curry and cream cakes for dinner , which was something I wouldn't have dreamed of the day before , then I had enough energy to take my dog for a really long walk for the first time in ages!

So yeah , long story short , I was nervous because of the potential side effects but it was all worth it

I really hope you get a good result on remicade too! Keep us posted
04-27-2011, 02:23 PM   #20
Brian'sMom
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Lucy,
Why did you stop taking it? When did you stop and won't you have anitbodies now? I wish Remicade would've worked for us...the 'only every 8 weeks' looked nice
04-27-2011, 03:17 PM   #21
Saphira
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We are on the way back from the hospital. Brandon did great with the Remicade infusion. Pain level has already dropped from8to a 2!! Lets hope this is the one.
Trina
04-27-2011, 03:30 PM   #22
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That is great news! I wish my son would not have developed antibodies against it because it worked like a dream!
04-27-2011, 06:23 PM   #23
Brian'sMom
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I second that Scrapper1264!!
Good job Brandon! If keeps working beyond the induction period, just keep on doing it...don't miss any doses! I talked with the Remicade Rep in the KS area. He said he himself has been on Remicade for 5 years. He said he went from making plans to have his colon removed to remission. After his first year on it he had another colonoscopy and his dr told him it looked like a different colon altogether! He stressed that the key with Remicade is to not lapse in treatment. He is religious on every 8 weeks. Never misses. We knew on third dose during the induction period that Brian was allergic. (I also noticed, in hindsight, that he wasn't having the 'great feelings' like he did after the first dose. In the first 2 weeks its was like a miracle after that Brian would say, 'its kinda working') His body had probably already started not liking it. But don't worry, being allergic is slim, but if it happens to not be the 'one' thing...you have Humira to fall back on.
04-27-2011, 07:10 PM   #24
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That's great news Trina! May it last and last and last!!!
04-27-2011, 08:17 PM   #25
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Trina - AWESOME! I hope he has a complete response and years of great health :-). There was a young lady in our support group who had been on Remicade and in complete remission for more than 6 years. She was going strong and no plans to change. It is that miracle for so many kids - I hope it is one for you!!!
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04-27-2011, 08:44 PM   #26
Brian'sMom
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Julie,
How's Claire doing? Do you think you will try Remicade? These biologic drugs do work so well. They give our kids such relief and they can be normal, happy kids again.
04-28-2011, 08:49 AM   #27
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Aww thats such a good result Saphira , this post has made my day

Briansmum - I had to sop infliximab after 12 months because it was NHS funded , and the application was only for 12 months worth. as I was doing so well we thought we'd give it a go without as my consultant said sometimes treatment like infliximab changes the natural course of the disease and that means I might not need it anymore? But my last infusion was end of october , so I would have been due another one end of december , but my symptoms didnt come back until feburary. My nurse said they only worry about the risk of developing antibodies if you've been off it longer than a year , which I haven't so fingers crossed!!
04-29-2011, 04:31 PM   #28
Brian'sMom
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Lucy,
I hate that when insurance determines the course of action. Good luck in getting appoval soon so you can stop flaring.
04-30-2011, 09:00 PM   #29
Saphira
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Wow, Remicade is a miracle drug. Toby (My 7 year old) said it feels like his brother came back. Brandon is a different child very minimal pain, joint pain gone, eyes better, sleeping, it's only been 4 days but unbelieveable change with the Remi!! I hope it lasts..
Trina
04-30-2011, 09:49 PM   #30
kiny
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I think remi is likely the best med out there for crohn's. When I got it I felt better literally 1 minute after. I was super happy.

You can read numbers on remi (called Infliximab) here too: http://www.acg.gi.org/media/releases/ajg201158a.pdf It's by far the most effective drug atm.

But it's a very powerful drug, doc said it's hundreds times more powerful than imuran. It's also a hard drug to make. They can't administer Remicade on a weekly basis, it's done yearly at max here, even though some clinics don't go by that rule. It's a last solution drug here, if all else fails they do Remicade.

In between they give imuran. But they are very careful about giving Remi, even though it is a magical drug for most.

Last edited by kiny; 04-30-2011 at 09:56 PM.
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