Share Facebook


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

My Support Groups:
Update

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-IVIG
04-02-2013, 08:19 PM   #2
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:


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 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-02-2013, 08:22 PM   #3
Clash
Forum Monitor
 
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))
__________________
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
04-02-2013, 08:28 PM   #4
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
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, 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
04-02-2013, 08:31 PM   #5
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sorry
__________________
Catherine
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
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Sorry MLP... I should send hugs but just feel like
__________________
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
04-02-2013, 09:05 PM   #8
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
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
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
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
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
..
__________________
Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



04-03-2013, 04:00 AM   #11
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
Sending (((hugs))) too.
__________________
Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
04-03-2013, 04:29 AM   #12
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

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

My Support Groups:
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.......

J.
__________________
Julie

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
parentnj
Forum Monitor
 
parentnj's Avatar
 
Join Date: Dec 2012
Location: Hillsborough, New Jersey

My Support Groups:
I hope the switch goes well ... heart goes out to you!
__________________
Son Alec 13yrs old - DX 11/2012
Remicade
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
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
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
Prayer
04-03-2013, 10:57 AM   #16
Jmrogers4
Moderator
 
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.
__________________
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
04-03-2013, 10:14 PM   #17
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Thinking of you...
__________________
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
04-03-2013, 11:54 PM   #18
awmom
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
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
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
jmckinley
Senior Member
 
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
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
I hope the switch goes smoothly !
My thoughts are with you
__________________
~T~
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
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
MRI has been moved up to next week


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

My Support Groups:
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!
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. 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
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
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
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.
04-07-2013, 01:08 AM   #25
DustyKat
Super Moderator
 
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
parentnj
Forum Monitor
 
parentnj's Avatar
 
Join Date: Dec 2012
Location: Hillsborough, New Jersey

My Support Groups:
good luck!
Reply

Thread Tools


All times are GMT -5. The time now is 04:59 AM.
Copyright 2006-2017 Crohnsforum.com