Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Update on Violet: RELAPSE


 
04-08-2014, 09:56 AM   #1
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
Update on Violet: RELAPSE

Hi everyone,

After a CLEAR PILLCAM, clear scopes, on Jan 24, V has relapsed.
She was on BOTH Remicade and Imuran when this happened.
She was six weeks out from her last Remicade (Jan 21) when symptoms returned.
She is 4mos post d/c prednisone (d/c Nov)

She is steroid dependent. I cannot believe this shit.
Even the dual therapy couldn't hold her. What in the hell?
Plan is: continue Imuran
Add Humira WEEKLY X3 then go to biweekly

It won't work, she's been on Humira (though not with an immunomodulator added) and on Remicade and on Remicade WITH Imuran and she still can't stay well.
__________________
VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-08-2014, 10:23 AM   #2
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Sounds like some similarities with us too. D doesn't have clear scopes, but has a lot of healing on her last MRE. Everything was actually clear in her small intestines at her last scope! Her symptoms aren't subsiding hence why we are doing the EN. I refuse for D to go back on Prednisone as we just finished Sunday. She is steroid dependent, being on it for 1.5 years, but the only way to change that is to stay off it for a while I am told, sometimes away from steroids for a year.

D is on the combo Humira & Methotrexate (with some prevacid on the side)and is still in massive pain, going 15x a day and has no energy and is barely on the acceptable weight percentile at 5th%. Nothing we are trying seems to be working to a manageable level to function.

We are also ordering blood work to determine the level of Humira in her system to determine if it is even doing anything, which could be one of the problems in the doc's opinion. Doc wanted to double up the Humira to once a week (now taking it biweekly) and I am not prepared to do that yet without confirming it even does anything for her.

We never did Remicade with Imuran or MTX though. D wasn't on Remicade long enough to allow us to try that. She had an allergic reaction that required hospitalization and has now built up antibodies to Remicade.

I do hope Humira+Imuran does the trick. I have met a few kids at SickKids that Humira & MTX has done great things for them. If I had asked around more I would have heard about Imuran, but since it wasn't the drug we were trying I never asked further.
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
04-08-2014, 10:38 AM   #3
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Sorry to hear that! Really hope she gets better soon. Good luck with the Humira again
04-08-2014, 10:52 AM   #4
Maya142
Forum Monitor
 
Maya142's Avatar
For what it's worth, my daughter started Humira again in January and doing a loading dose (4 shots at 0 weeks and 2 shots at 2 weeks and then weekly) really helped it kick in.That said, she's flaring now so no idea how long she'll be on it.
I've never heard for doing Humira 3 times a week, do you know how long she'll have to do that for?
Have you asked about the newer drugs like vedolizumab and Stelara?
Poor Violet, hope something kicks in soon!
__________________
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
04-08-2014, 11:24 AM   #5
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Ugghh, Julie, so sorry to read this!

What symptoms are affecting V? Is there any possibility the symptoms are being brought on by scar tissue and not inflammation?

__________________
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
04-08-2014, 11:33 AM   #6
Clash
Forum Monitor
 
Clash's Avatar
Oh no so sorry to hear V is having issues. This is a bit where we are at as C is on MTX, remicade(15mg/kg so higher than adult dose) and infusions at 6 weeks. I hope the combo of humira and Imuran will get her back to remission.
__________________
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
04-08-2014, 11:56 AM   #7
Patricia56
Senior Member
 
Patricia56's Avatar
 
Join Date: Jul 2012
Location: Northern California, USA
I'm assuming they increased the frequency and dosing of remicade before returning to HUmira? Or did they check her HACA antibodies and/or remicade levels?
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
04-08-2014, 01:07 PM   #8
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
SupportiveMom: Ack, that does sound like V. She was on pred for 18mos in total but got sick every time we weaned, hence the dual therapy. This sucks, doesn't it? Doc says he'll do Humira levels after 4th dose.

Maya142: Not 3X wk, once/wk for three weeks. He offered that OR loading dose, we chose that as last time she did loading dose and got zero result. Haven't talked about either of the two you mention, he has mentioned Cimzia only.

Tess, fatigue in the extreme (had to get her a wheelchair to go anywhere, as she cannot walk/stand for more than a few minutes, too weak) and calprotectin of over 600 (was normal in Feb) and joint pain.

Clash, I had no idea your boy was on a big dose/six week sched. She was on the standard 5mg/kg per 8wk. So you are also dealing with flare while on dual...I have no words. It just sucks is all I can say.

Patricia, yep, HACA (neg) and trough levels done twice and in PERFECT thera range for both Remicade and Imuran as of Feb. *sigh* She is just refractory as hell.
04-08-2014, 01:20 PM   #9
Patricia56
Senior Member
 
Patricia56's Avatar
 
Join Date: Jul 2012
Location: Northern California, USA
did she ever get benefit from remicade?

We are at 4 weeks remicade treatments following a period of obvious response and then decreased response. Next step will probably be doubling dose although we are checking HACA and trough levels prior to this treatment.

I have heard of some people using triple dosing of remicade too.
04-08-2014, 01:26 PM   #10
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
Patricia, no freaking benefit, she started it Dec 2012 and had zero, I mean zero improvement so in May 2013 when landed in hosp, IV steroids (worked like in a few HOURS) and Imuran were added and she got better right away. Also oral pred for months and months...May until Nov. Sure enough, take away her pred and she got sick again. So one may reasonably conclude that neither Remicade nor Imuran were/are helping; it was all steroid benefit.
04-08-2014, 01:45 PM   #11
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
If I wasn't so worried about the effects of the steroids I would throw all the other meds away & just live off that. At least you notice something! I wish it was that easy. Oh to dream... big hugs!
04-08-2014, 04:08 PM   #12
HelenMelb
 
Join Date: Mar 2013

My Support Groups:
So sorry to hear this. Maybe consider a clinical trial? The SSI vaccine by Qu Biologics seems very promising, and I believe it is available in the US. Wishing you all much better times ahead.
04-08-2014, 05:17 PM   #13
Jmrogers4
Moderator
 
Jmrogers4's Avatar
No advice, just support.
__________________
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
04-08-2014, 05:33 PM   #14
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sorry to hear
__________________
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)
04-08-2014, 06:40 PM   #15
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Words can not describe ...
I am so very sorry
We saw a similar thing for DS with pred and Mtx .
It just does nothing at all for him.

Hope the humira gives some relief
__________________
DS - -Crohn's -Stelara -mtx-IVIG
04-08-2014, 08:38 PM   #16
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
I don't have words either. Big hug......stupid disease.

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
04-08-2014, 11:18 PM   #17
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
__________________
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.
04-09-2014, 07:11 AM   #18
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I'm so sorry for V. No words found here either.
__________________
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
04-09-2014, 07:27 AM   #19
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
(((((Hugs))))) for you and your girl.

I hate this disease.
__________________
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
04-09-2014, 01:15 PM   #20
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
I'm so sorry to see your update , crohns is just horrible, big hugs to you and v. Hope the humira helps
04-09-2014, 04:36 PM   #21
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
Thanks all
It really does help to not feel alone.
04-09-2014, 04:53 PM   #22
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
You are never alone! That the great thing about this forum everyone is so supportive of each other. Its my definite go to place, most of the time before I talk to my own mother!

04-09-2014, 07:04 PM   #23
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
I just came across this article and it made me cry but it also made me hopeful. Sometimes it is so hard to have hope when everything seems to be so dark. Thinking of you and V.

http://www.ufvcascades.ca/2014/04/ar...t-crohns-disea
04-09-2014, 07:08 PM   #24
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Great story T. Thanks for sharing.

04-09-2014, 08:41 PM   #25
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
__________________
Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-09-2014, 10:28 PM   #26
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
So sorry to hear this. Is she having pain along with her extreme fatigue? With the pill cam and the scopes being clean at the end of Jan (just 2 mos ago) could something else be causing the extreme fatigue? Sorry if this is a dumb question.
__________________
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.

Last edited by Brian'sMom; 04-09-2014 at 10:43 PM.
04-10-2014, 06:07 AM   #27
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
Twiggy, thanks! Sounds like he had the hip necrosis associated with steroid use, also the vertebral fracture from osteoporotic changes secondary to steroid use. I wish the article said what drugs got him well...

BriansMon, God, so NOT a dumb question, it was the very question the doc and I raised and we did a hormone panel and ANA to see if it could be some other cause. Nope, just (HA..."just") Crohn's.
04-10-2014, 06:14 AM   #28
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Ugh I just ordered that test for when we are in the hospital next week. In a way I was hoping it could point to getting further answers... crud at least it would give you another direction to explore.

04-10-2014, 10:30 AM   #29
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
SupportiveMom, I went down every differential diagnoses path that made sense to pursue, any and all tests I requested were happily and readily run, (some repeatedly) in the end, it was all Crohn's. Remember this is an immune system disease, not a GI tract disease per se. So it manifests in all sorts of weird ways
04-10-2014, 10:39 AM   #30
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
I can relate to your frustration. My son got so discouraged...He'd say,"I don't want to try something new... it fails... add this, then add that, then change that, etc" It's mentally exhausting because you try to get your hopes up with each one. Poor Violet. I will send prayers your way. (And the word "Refractory" was used here in KC.. That sets in deep with the despair for these kids- I'll have to say, the term was never used once at Mayo. But maybe because the majority is refractory there! ) Hang in there, unfortunately we all have to have our warrior gear on at all times with this disease.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Update on Violet: RELAPSE
Thread Tools


All times are GMT -5. The time now is 07:35 PM.
Copyright 2006-2017 Crohnsforum.com