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Crohn's Disease Forum » Parents of Kids with IBD » Success stories with Remicade?


 
03-24-2015, 07:06 AM   #1
lenny
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Success stories with Remicade?

Who has a success story with Remicade? It seems like some have success for a time and then rashes and other side effects begin to occur.

I read that it only had a 30% chance of working. Is that not correct?

My son's GI wants to hold off on biologics, for now. I can tell he doesn't like them.
03-24-2015, 08:51 AM   #2
Cat-a-Tonic
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Hi Lenny, I've moved this post into its own thread so that it doesn't get lost in the other thread or derail that thread. Hopefully you'll get some good answers here. Thank you!
03-24-2015, 10:23 AM   #3
Tesscorm
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My son has been on remicade for two years now. So far, (and he just had a follow-up scope a couple of weeks ago...) remicade is working very well.

He doesn't get sick any more often than anyone else. Actually had a roommate diagnosed with mono last year but my son was fine. He did have strep later in the year but didn't seem to have it any worse than usual (strep) and seemed to recover the same as pre-remicade. He did have some rash - ER doctor diagnosed molloscum, for which he is more vulnerable due to remicade, however, I'm not sure that's what it is... it disappeared more quickly than I'd expected and he still has the odd spot, which GP now believes is simply irritation from hockey equipment, etc.??? In any case, my point is that the rash did appear but, again, cleared up relatively quickly with no treatment.

I don't know if it helps at all but, I did read a study noting that using supplemental EN does increase remicade's success by a fair bit (study is included in the Parent's research section), my son currently drinks 1-2 Boost shakes (250-500 calories) per day - however, study indicated average EN intake was 1200 calories. He also takes 1000 mg of Krill oil and 2,000 UI of vitamin D. Of course, have no idea if any helps... but it's not hurting.

I'm sure you'll soon get a few more remicade stories...
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-24-2015, 10:32 AM   #4
Clash
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Remicade was a miracle med for my son. After the first infusion his symptoms abated. We were so thankful.

I do firmly believe it gave him two years before facing a surgery and probably minimized the surgery required. There was much improvement save for a small area that the surgeon later deemed irreparably damaged. The other areas of inflammation were returned to pristine condition with remicade and methotrexate.

I only hope that humira will bring him the same level of treatment. He was asymptomatic with the damaged area so we will take care to monitor fecal calprotectin(a good indicator for him) and utilize other testing(blood work doesnt indicate inflammation for him).

Hated to leave the remicade behind but he built up antibodies.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-24-2015, 11:02 AM   #5
my little penguin
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NEWS & PERSPECTIVE › MULTISPECIALTY
The Duration of Effect of Infliximab Maintenance Treatment in Paediatric Crohn's Disease is Limited
C. I. de Bie, T. Z. Hummel, A. Kindermann, F. T. M. Kokke, G. M. Damen, C. M. F. Kneepkens, P. F. van Rheenen, J. J. Schweizer, J. H. Hoekstra, O. F. Norbruis, W. E. Tjon a Ten, A. C. Vreugdenhil, J. M. Deckers-Kocken, C. F. M. Gijsbers, J. C. Escher, L. de RidderDisclosures
Aliment Pharmacol Ther. 2011;33(2):243-250.

ABSTRACT AND INTRODUCTION
Abstract

Background Infliximab is effective for induction and maintenance of remission in children with moderately to severely active Crohn's disease (CD).

Aim To evaluate the long-term efficacy of infliximab treatment in paediatric CD.

Methods In this observational, multicentre study, all paediatric CD patients in The Netherlands treated with infliximab from October 1992 to November 2009 and with minimal follow-up of 3 months since start of infliximab, were studied.

Results One hundred and fifty-two CD patients [81M; median age at start of infliximab 15.0 years (IQR 13.1–16.4)] received a median number of 10.5 infliximab infusions (IQR 6–21). Median follow-up after start of infliximab was 25 months (IQR 13–40). Kaplan–Meier analysis showed that the cumulative probability of losing response to infliximab in patients who initially required repeated infusions was 13%, 40% and 50% after 1, 3 and 5 years, respectively. Seventy-four patients (49%) needed dose adjustments, with a median time to any adjustment of 6 months.

Conclusions Duration of effect of infliximab is limited as 50% of patients on infliximab maintenance treatment lose their therapeutic response after 5 years. Dose adjustments after start of infliximab are frequently needed to regain therapeutic benefit. These findings emphasise the need for effective, long-term treatment strategies for paediatric
From:
http://www.medscape.com/viewarticle/739551
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DS - -Crohn's -Stelara -mtx-IVIG
03-24-2015, 11:06 AM   #6
my little penguin
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http://www.hindawi.com/journals/grp/2011/287574/
03-24-2015, 11:11 AM   #7
crohnsinct
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Another Remicade lover here! O has been on it for three years now and her first post dx scope was in early March and her previous war zone colon is now pristine. Not one illness from immune suppression. The only side effect she has and it is a rare one was Remicade induced psoriasis but we are sticking with the Remicade. I have a bit of psoriasis and psoriasis is an auto immune condition so she might have gotten it anyway so I am not 100% bought into it being caused by the Remicade but it definitely got very bad very fast after starting Remi. We did add mtx to O's treatment a year in. We added it for joint issues (they are thinking psoriatic arthritis).

When my second daughter was dx'd I was actually hoping for Remicade given our great experience with it for O. She is on mtx alone.

I have read in the adult section of people staying on Remicade for up to 10 years and counting.

The success rate is as good as if not better than most of the meds out there and like all the other meds it works for some and not others.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-24-2015, 11:18 AM   #8
my little penguin
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It was the only drug to give DS his life back
6-mp did nothing and went to his liver
Mtx alone was not enough -he couldn't get off steriods and had vasculitis
Remicade fixed that
Granted he had an allergic reaction after 8 months but ....
He is an extremely allergic kiddo ( drug allergies , food allergies , insect/pollen allergies )
History of anaphalaxis
So not surprising he reacted to remicade
He has been on Humira ever since ( two years now )
03-24-2015, 12:40 PM   #9
Rose
 
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Has Humira helped your son just as well as the Remicade?
03-24-2015, 12:49 PM   #10
my little penguin
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DS has done well in Humira
03-24-2015, 12:55 PM   #11
Rose
 
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Happy to hear Humira is working for your son. My son is at the maximum Remicade dose now, every four weeks. I am preparing for a Plan B.
03-24-2015, 01:05 PM   #12
Jmrogers4
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Remicade lover here as well. Son has been on it for 15 months now and it has been amazing. It has allowed him to have a normal teenage life and to catch up to his peers on growth. I pray every day that it will continue to work for many years or until there is a cure.
He has a healthy appetite and has gone from 5'1" and 89 pounds to 5'8" and 130 pounds. has a normal formed BM once a day, no more joint pain, no more eczema, is able to handle the stresses of high school with no more problems then any other healthy 15 year old. Has not missed a day of school do to sickness since starting remicade.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-24-2015, 02:47 PM   #13
Maya142
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M did very well on Remicade with MTX - in fact her scopes showed that 8 months after being diagnosed, she went from having inflammation all through her colon, terminal ileum and stomach to having just mild inflammation in her TI - NO inflammation anywhere else! We only switched her from Remicade because of her arthritis - her Crohn's has been mostly well controlled. She even grew half an inch on Remicade - we were not expecting that because she was 16 and we thought she was done growing!

No side effects at all from Remicade besides some tiredness the day after the infusion. No increase in infections or anything like that - and she was on a high experimental dose of Remicade (20mg/kg) every 4 weeks.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-24-2015, 04:07 PM   #14
Rose
 
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My son is doing okay on Remicade. He still has urgency and his stool are watery consistency. Good but not great. When he was in a short remission he gained weight, had semi formed stools, had almost no urgency, had 2 BM's a day and no blood. Life was good. He was pretty darn close to normal. He was so happy. I heard that Remicade was a miracle in a bag for some.
Not sure if this is the new normal. We are kind of settling because we know that things could be so much worse. Two years and still figuring it out.
Just curious. My son was on a lot of antibiotics for recurring ear infections when he was young. They gave him Clindamycin because he had skin reactions to a couple of meds. I read some research about increased Crohn's risk with antibiotics prior to age 5. I know it won't help my son but it may help someone elses or maybe someday my own grandchild. This is a terrible disease. I wish I could take it from my son everyday.
03-24-2015, 04:10 PM   #15
crohnsinct
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Rose: How long has he been on Remicade?

Yeah there is some evidence of early and prolonged antibiotic use but it is only one of many factors. They are still trying to figure out what the perfect storm is and it will end up being a combination of G.E.M. (Genetics, environment and microbial) and even then it will probably be different for each person. Just one big mystery!
03-24-2015, 04:19 PM   #16
Rose
 
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He has been on Remicade since May 2014.
03-24-2015, 05:53 PM   #17
hedge
 
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Remicade is an amazing medication that saved me, just like it saved a lot of your loved ones.

A few tips:
1. REMISTAR, REMISTART, and REMISTART.
2. I usually get really tired and overall wiped out from my infusions, so let him rest on those days.
03-24-2015, 05:58 PM   #18
my little penguin
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If he is having trouble gaining Rose has he tried EEN or supplemental en?
DS drinks 2-3 peptamen jr a day to increase the efficacy of Humira.
He also did 9 weeks of EEN with peptamen jr.
When you say Max dose ( 10 mg/kg)? Correct ?
Has he had antibodies /remicade levels done ??

Humira takes longer to become therapuetic and can not be adjusted for weight so what worked for your kiddo two years ago 40 mg at x weight suddenly becomes a lot less meds as the kiddo grows and gains weight ...
03-24-2015, 07:22 PM   #19
lenny
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I appreciate all of your stories. I had a more negative view of it, than I do now. Thank you. If we have to go there, I won't be AS worried!
03-24-2015, 07:41 PM   #20
Rose
 
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Ronnie has had no side effects from Remicade. We have done antibody levels twice and they are good. Not building antibodies against Remicade. I just think the drug is working good, not great. Feel like we are just teetering along. We have tried using Ensure Plus and he flared, something in it doesn't agree with him.. maybe carrageenan? not sure. Hesitant to try another drink. Just like everyone can eat different foods, Remicade will work better for some than others. Some gastros believe in top down approach. Start with Biologics first, Think better results if caught in early stages. I would not hesitate to recommend the Remicade, it has been a God send for many. Wished it worked better for us.
03-24-2015, 08:41 PM   #21
crohnsinct
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Yeah Rose, I would expect better by now. I can't remember but are you using anything with the Remicade? With some patients (my daughter included), Remicade does the heavy lifting but it doesn't get the kids all the way to a real good remission. He may need to add a stint of EEN or Mtx. My daughter was on Remicade for 4 months but adding a 6 week course of EEN is what finally got her to remission. She is now using Mtx along with the Remi.

But you are right. For some it just doesn't work. My nephew was one of them. He even tried max dose, 4 week interval with Mtx. He has since switched to Entyvio.
03-24-2015, 08:44 PM   #22
my little penguin
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Rose peptamen does not have carragean
It semi elemental so the proturns are more broken down ( less healthy intestine needed)
Other need an elemental formula ( eo28 splash , neocate , elecare etc)
The plus formulas are the hardest on the system due to the extra calories the gut diesnt tend to like those kind often in kiddis with GI issues imo.
Glad biologics are working at least Ok
03-24-2015, 09:30 PM   #23
Rose
 
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My son is taking remicade 10 mg/kg every 4 weeks
And methotrexate weekly to boost. He is better but not at
His best. Levels are where they should be. Doctor doesn't want
To give up yet. How is your nephew doing with entyvio?
03-24-2015, 09:38 PM   #24
Rose
 
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Thank you for all the info about peptamen. Never heard of it before. Very informative.
Will mention it To gastro. Would love to try it. Anyone using benefiber to try and form
Up loose stools. Son Just started very slowly, 1-2 tsp. a day, and I am a
Nervous wreck. No guts, no glory. I have to keep
Telling myself that if I don't try new natural things to
Try and help this, I will never know if something will help.
03-24-2015, 10:01 PM   #25
Maya142
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Have you thought about getting a second opinion Rose? We lived in NJ for many years and there are many CHOP facilities all over south NJ.
My daughter drank Peptamen Jr too but there are many formulas - pediasure, pediasure peptide, Neocate, Elecare - It's a matter of trial and error.
03-25-2015, 06:44 AM   #26
Rose
 
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Maybe. I added ensure plus supplement on my own after talking with pediatrician.
Been to three doctors and no one mentioned it. They
Think his weight is fine but I know better, plus who
Doesn't like a little cushion to prepare for the
Dreaded Next flare.
03-25-2015, 08:02 AM   #27
crohnsinct
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He is doing very well with Entyvio. It has a different mechanism than the other anti tnf biologics. The VERY simplistic explanation our GI gave us is that the tnf has sticky stuff on it and so does the intestine. When the tnf comes it sticks to the intestines and is able to squeeze in. Entyvio neutralizes the sticky stuff so the tnf can't get in. It does not suppress the amount of tnf produced. Sooooo, the theory could be in my nephew's case that he isn't overproducing tnf so suppressing did nothing because he just had super efficient "stickt stuff" and all his tnf was getting in.

How's that for sophisticated?
03-25-2015, 10:31 AM   #28
Mehita
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DS has been on Remicade since November 2013. It started working immediately for him. He was in remission a month later and hasn't looked back. He's never had side effects that we could attribute directly to Remicade. He's up 20 pounds and 5 inches and by looking at him you'd never know he had been as sick as he was. It's been the best and most effective maintenance med for him.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-25-2015, 11:28 AM   #29
lenny
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My son gave an FCP sample earlier in the week and we shold have the results soon.
03-26-2015, 10:56 AM   #30
araceli
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Another success story with remicade here. 2 years plus and daughter doing great.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
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