Crohn's Disease Forum » Parents of Kids with IBD » Remicade - some hope!


06-25-2018, 07:13 PM   #1
Maya142
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Remicade - some hope!

My older daughter told me today that she met someone through a friend at the arthritis foundation who also has arthritis and is on Remicade. She has been on Remicade for 17 years!! 17!!! She started Remicade very close to when it first came out and is now in her 30s.

I have never heard of anyone being on Remi for 17 years but I thought it was exciting to hear !

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crohnsinct
Mehita
Jmrogers4
Tesscorm
pdx
Farmwife
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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
06-25-2018, 08:48 PM   #2
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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Wow--that's a long time!
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
06-30-2018, 09:22 AM   #3
Farmwife
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Join Date: Apr 2012
Location: Michigan

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Wow, has remicade been around that long? 😮
I wish Grace could still take it. 😔
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
07-01-2018, 07:52 PM   #4
SoccerMom47
 
Join Date: Jun 2018
Location: Albany, New York
We are 6 weeks in, so news like that is so nice to hear!
07-01-2018, 08:09 PM   #5
Maya142
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Wow, has remicade been around that long? 😮
I wish Grace could still take it. 😔
I think Remicade was out then...maybe even a little before then. Or she could have been in clinical trials. I think there was one anti-TNF released in 1998 but I'm not sure if that was Remicade or Enbrel.
07-09-2018, 01:08 PM   #6
Jmrogers4
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Hope it keeps working for Jack for that long
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Jacqui

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

Husband dx Crohn's 3/1993
currently none due to liver issues
10-09-2018, 02:21 PM   #7
Guywhocan
 
Join Date: May 2017
Location: Edison, New Jersey
Yes, the nurse at Seattle Children's Hospital Pediatric GI dept says that she herself has been on Remicade for 10 years.
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Son with Crohn's
DOB is Jan 2003
Diagnosed April 2017
On Remicade since April 2017: 10 mg every 4 weeks
Started Specific Carbohydrate Diet April 2017
On 'Modified SCD' since Sept 2018
Four VSL#3 capsules/day
No symptoms except weight and growth
Gradually reducing enteral nutrition

Last edited by Guywhocan; 10-09-2018 at 03:00 PM.
10-11-2018, 04:56 AM   #8
wthrsstphn
 
Join Date: Oct 2018
My older daughter told me today that she met someone through a friend at the arthritis foundation who also has arthritis and is on Remicade. She has been on Remicade for 17 years!! 17!!! She started Remicade very close to when it first came out and is now in her 30s.

I have never heard of anyone being on Remi for 17 years but I thought it was exciting to hear !

Tagging:
crohnsinct
Mehita
Jmrogers4
Tesscorm
pdx
Farmwife
I'm at 16 months on Remicade with my infusions being every 4 weeks. For the first time in almost 2 year's I am very close to being able to say I'm in remission from my severe UC. My 19 year old son has also recently been diagnosed with UC, but is doing the oral meds & getting IV iron infusions for blood loss anemia. His doctor recently told him if he doesn't achieve remission soon then we may be hooked up to Remicade IV's beside each other. I met someone at my infusion center who has been on it for 13 years & said it's been her miracle. I'm hoping it's mine & many others miracle drug as well. Best of luck to you!!
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