04-02-2013, 08:16 PM   #1
my little penguin
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Join Date: Apr 2012

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Spoke with GI
DS will start Humira once he has completed his MRI
and it has been reviewed by Neuro.
In shock right now-

so May should be a good time for humira

DS - -Crohn's -Stelara -mtx
04-02-2013, 08:19 PM   #2
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Farmwife's Avatar
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Location: Michigan

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I'm so sorry.
I know you didn't want to get to this point.
Your doing a great job for him.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
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,
04-02-2013, 08:22 PM   #3
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Clash's Avatar
Oh MLP, I'm so sorry you are in a holding pattern, waiting is the worst!! I can understand the shock. It is like we come to terms with the treatment everything gets upended! When have they scheduled his MRI for? I am hoping for good results with the MRI and the Humira. ((HUGS))
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
04-02-2013, 08:28 PM   #4
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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I'm so sorry MLP! When things change, it almost feels as bad as when you got the diagnosis! All of a sudden, you're no longer settled! Lots and lots of hugs...

Hoping too that there are no issues with the MRI and that humira is his miracle drug!!

wish I could do more...
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
04-02-2013, 08:31 PM   #5
Catherine's Avatar
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-02-2013, 08:33 PM   #6
my little penguin
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MRI is scheduled beginning of MAY that the is longer than 6 weeks from his last remicade infusion so GI is trying to move up MRI date so the switch is easier.
he has no other neuro signs of demylination so.....hoping it is an easy rule out test and we move on.
04-02-2013, 08:45 PM   #7
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Location: California

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Sorry MLP... I should send hugs but just feel like
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
04-02-2013, 09:05 PM   #8
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Twiggy930's Avatar
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Location: Canada

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Sorry to hear this news. Change and waiting are no fun and waiting for change is the worst! Really hoping that Humira solves all the problems. Got my fingers and toes crossed.
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-02-2013, 09:50 PM   #9
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Brian'sMom's Avatar
Join Date: Dec 2010
Location: Kansas

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MLP, I agree that change shakes the foundation and stirs up the worry all over again. But I'd like to say...Humira is all human (no mouse parts ). Its convenient in that you can do it on your own schedule at home. It takes like 10 seconds and you're done. You can take it with you if you travel or are on vacation... These are the positives I clung to when Remicade wasn't the ticket for us. HUGS!!
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

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.
04-03-2013, 12:55 AM   #10
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upsetmom's Avatar
Join Date: May 2012
Location: New South Wales, Australia

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Daughter dx CD March2012...
(aged 14)

Currently on:
125mg Imuran

Dx Premature Ovarian Failure 2014

04-03-2013, 04:00 AM   #11
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Location: Swindon, United Kingdom

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Sending (((hugs))) too.
Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

Peristeen Irrigation every day.
Self Catheterisation

Waiting for bowel stimulator!
04-03-2013, 04:29 AM   #12
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Location: Tipperary, Ireland

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Oh mlp so sorry to hear you are in limbo again. Thinking of you
04-03-2013, 05:38 AM   #13
AZMOM's Avatar
Join Date: Nov 2010

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That's awhile to wait . On a positive note, Im SO GLAD to see them look for demyelination before the switch.

Fingers crossed for an earlier date.......


Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-03-2013, 06:53 AM   #14
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parentnj's Avatar
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Location: Hillsborough, New Jersey

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I hope the switch goes well ... heart goes out to you!
Son Alec 13yrs old - DX 11/2012
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
1000 IU B-12 Daily
One A Day for Athletes

Failed - Pentasa
04-03-2013, 08:28 AM   #15
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Johnnysmom's Avatar
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Location: Cincinnati, Ohio

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I am sorry MLP.
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
04-03-2013, 10:57 AM   #16
Jmrogers4's Avatar
Hope everything gets moved up quickly and Humira works as well as remicade did in the beginning and for a good long time.

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
04-03-2013, 10:14 PM   #17
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Mehita's Avatar
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Location: Minnesota

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Thinking of you...
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-03-2013, 11:54 PM   #18
Senior Member
Join Date: Sep 2012
Location: College Station, Texas
Hope you can get the MRI sooner MLP, and that HUmira is the answer! It's good that your docs are being thorough. Let us know how it goes.
04-04-2013, 03:45 AM   #19
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Sascot's Avatar
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Location: Falkirk, United Kingdom

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Just wanted to wish you luck with the switch to Humira! Hope it helps alot without the side effects!
04-04-2013, 08:41 AM   #20
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jmckinley's Avatar
Join Date: May 2012
Location: Alabama
Hugs to you! I hope the switch to Humira goes well. Sorry you've been pushed to this point. We hate giving them all these meds, but at the same time are thankful for them because they help our kids feel better. That's what it's all about! Hoping Humira is his answer!
04-04-2013, 06:28 PM   #21
Crohn's Mom
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Location: Florida

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I hope the switch goes smoothly !
My thoughts are with you
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
04-05-2013, 04:40 PM   #22
my little penguin
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MRI has been moved up to next week

and at the same time
04-06-2013, 10:03 PM   #23
Holding It Together
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Join Date: Jan 2013
Location: North Central, Illinois

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Glad to hear it has been moved up. Hold on, Momma, another bumpy ride ahead, but it may end up being as smooth as a babies bottom!
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-06-2013, 10:20 PM   #24
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Location: El paso, Texas

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that's great. Hope everything gets better soon.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
04-07-2013, 01:08 AM   #25
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
So good the hear the MRI has been moved up mlp! But so understand the flip side too!

Thinking of you!

Dusty. xxx
04-10-2013, 05:48 AM   #26
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Location: Hillsborough, New Jersey

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good luck!

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