Crohn's Disease Forum » Parents of Kids with IBD » Statistics on people who were able to maintain remission off of meds.

12-05-2017, 06:27 PM   #1
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kimmidwife's Avatar
Statistics on people who were able to maintain remission off of meds.

Hi All,
I am having a little debate with some people on whether really going off of meds once you get into remission is a viable answer for our kids. (I say it is not and they are arguing that there are some people who are successful with it)
And whether you can maintain remission just through diet alone.
I am trying to find statistics or some good articles to share with them showing there is no proof of long term success with this.
Can anyone help?

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-05-2017, 06:45 PM   #2
my little penguin
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Join Date: Apr 2012

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People adults or kids ?

There is a big difference between the two cohorts
DS - -Crohn's -Stelara -mtx
12-05-2017, 06:51 PM   #3
Lisa's Avatar
Join Date: Apr 2010
Location: New York

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I can't help you with articles, but I can share my own experience....

Diagnosed at 7, was put on meds (sulfa drugs at the time) until remission was reached then taken off meds..... First remission later maybe two years? Back on meds, until remission, stopped until I relapsed...... Repeat for years until the time between stopping meds and coming out of remission was practically no time at all.......

All the while my disease was getting worse, multiple hospitalizations as a young adult, finally when I was around 30 I developed fistulizing disease..... Went on Remicade in fall 2005 34 years old) when my daughter was about 6 months old. Been on Remicade since, with hopefully no stopping in sight.

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-05-2017, 07:26 PM   #4
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Join Date: Mar 2012
Location: California

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Agree with MLP. Adults and kids are two different things. But really? Why argue. Just thank them for their concern and move on. I have found with some people, yes even my loving family who insists that I just need to change diet and add a little aloe and my kids will be fine, just won't be convinced no matter what. Put your energy into other things.

BUT if you are looking for studies I know that Dr. Peter Higgins and Dr. David Rubin have tweeted numerous studies about drug holidays and the rate of relapse.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

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
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-05-2017, 09:05 PM   #5
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I'm not sure what the numbers are, but you could probably find them on PubMed.

There are lots of children's hospitals doing diet only studies right now. But at our hospital, which has one of the biggest IBD centers, they will only enroll kids with relatively mild IBD - who have normal growth velocity, who have been in remission for at least 12 months without steroids etc. I know for one particular study, FC has to have been <250 in the last 3 months.

So I think it also must depend on severity of the disease. And they are monitored very closely to see if they relapse.
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
12-05-2017, 10:32 PM   #6
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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I would love info on this as well... it's something I've often wondered, wishing that one day S could go off meds. I have a friend, with UC (supposedly was severe when diagnosed but before S so I knew next to nothing about UC), who was treated with steroids only. She responded well, went into remission and was never put on maintenance meds. She just had a follow-up scope (has scopes every one or two years) and all is still good. As S was diagnosed ~6 years ago, it's been at least 7 years for her. I wish I knew how often this happens - because, of course, those aren't the people on forums...

I haven't asked S's GI because we all know the answer... 'everyone's different'. And, certainly, not going to take him off remicade just to 'try'.
Tess, mom to S
Diagnosed May 2011

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
12-05-2017, 11:00 PM   #7
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kimmidwife's Avatar
This is for kids and these are parents of kids with IBD who are claiming that their doctors said their kids will be able to come off of meds once in remission.
12-07-2017, 08:58 PM   #8
Senior Member
These are studies in adults about clinical course after stopping biologics. Although they are not about kids, I thought some of you might be interested.

Crohn's Disease Forum » Parents of Kids with IBD » Statistics on people who were able to maintain remission off of meds.
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