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Crohn's Disease Forum » Parents of Kids with IBD » Another year older and a new Dx.


 
03-23-2017, 08:48 PM   #31
my little penguin
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Ds reacted
First reaction was after it finished but before he went home
So everyone wanted to try again with iv solumedrol

Next infusion
Iv solumedrol -pre treat plus Benadryl and Zyrtec
Still had a prolonged reaction

So it was pulled and he started humira
Almost 5 years ago
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03-23-2017, 09:00 PM   #32
Tesscorm
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So sorry to hear this happened!! OMG, I can imagine how scary for you!

I'm not sure about your questions... I'm pretty sure I've read that there are times remicade can be continued after a reaction but I don't know how often it's continued 'successfully', ie without future reactions. Hopefully it can be continued...

Hugs... those 25 minutes must have been pure torture for you!
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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
03-23-2017, 09:52 PM   #33
pdx
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So sorry to hear this--how frightening. I'm glad that she didn't react with the second attempt, and I hope it ends up being a one-time thing.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral 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
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
03-23-2017, 10:13 PM   #34
Maya142
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I know one kiddo who had a reaction and then was pre-treated with steroids after that. She is still on Remicade, two years later. Her reaction involved chest tightness and a rash. She's never had a reaction after they added steroids though.

I hope it was just a one time thing.

Fwiw, M had a reaction to Entyvio and her GI says if she reacts a second time, after pre-treatment with steroids, we will probably have to switch drugs. We're (of course) hoping that won't happen.
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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
03-23-2017, 10:32 PM   #35
DanceMom
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A is not on Remicade, but she's been on her medication for years and only recently started having reactions. As with IBD, her medication options are somewhat limited so we're trying to ride this one out as long as possible. She receives fluids concurrently with the medication and that helps tremendously. We also pretreat with Tylenol, IV Benadryl and Solu-Cortef. The infusion is run at a slow rate, and even slower if she's sick. I don't know if those would be helpful options for Grace, but hopefully you can figure out something that works.
03-24-2017, 06:45 AM   #36
polly13
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Grace reacted to her Remicade today.
With in 15 minutes of the start
she said she was sick and started coughing.
Alarms started sounding and nurses started descending on her room.
Steroids were given and with in 25 minutes she was stable.
They called rheumatologist and they said give a go for second time but wait an hour.
All went well but I feel like I aged 10 years in that 25 minutes (does that make sense).

Sooooo question 1
Has anyone here have a one time only reaction? She's been on it for 2 years now.

And question number 2
For those who stared have reactions, how long until they pulled it?

Thanks for any feed back.
Hugs
Oh Farmwife so sorry to hear that - this happened Lucy with remicade but it happened a lot earlier, I think her third infusion, so they like you waited an hour and slowed it down and it went in ok, it happened again on her next infusion, it was so scary and it happened within minutes of it starting, they did the same thing again waited an hour and slowed down the infusion and it went in ok again. Unfortunately however, it wasn't working for her so we switched to humira after that, the main reason being it was not working, so I think they would have tried another infusion if it had been working but we will never know how many more they would have tried. Poor Grace hope she is ok and hugs to you - thats one of the scariest things that I ever experienced so I know how you feel, I was petrified and relieved when GI decided not give anymore.
03-24-2017, 06:49 AM   #37
Farmwife
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A is not on Remicade, but she's been on her medication for years and only recently started having reactions. As with IBD, her medication options are somewhat limited so we're trying to ride this one out as long as possible. She receives fluids concurrently with the medication and that helps tremendously. We also pretreat with Tylenol, IV Benadryl and Solu-Cortef. The infusion is run at a slow rate, and even slower if she's sick. I don't know if those would be helpful options for Grace, but hopefully you can figure out something that works.
Thanks, she's already treated with benadryl, Tylenol and fluids.
I'll find ot if the will add the steroids now.
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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
03-24-2017, 07:17 AM   #38
DanceMom
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Thanks, she's already treated with benadryl, Tylenol and fluids.
I'll find ot if the will add the steroids now.
IV Benadryl will work better than oral. We've used Solumedrol in the past but Solu-Cortef works well too. There's options so don't get too discouraged just yet.
03-24-2017, 09:11 AM   #39
Farmwife
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Thanks, I didn't know about the IV Benadryl.
03-24-2017, 12:40 PM   #40
my little penguin
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To be clear Benadryl iv or oral does not stop anaphylaxis from starting or stop it from happening
It purely makes the child more comfortable during a reaction

Iv steriods dampen the immune system response so it's less likely to react
Not as easily provoked
But again this won't stop anaphylaxis from occurring either

Epinephrine is the first line of treatment for anaphylaxis to stop it .

Good luck with the next infusion

Most if they are going to react will react during the next infusion
So fingers crossed
03-24-2017, 08:01 PM   #41
DanceMom
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To be clear Benadryl iv or oral does not stop anaphylaxis from starting or stop it from happening
It purely makes the child more comfortable during a reaction

Iv steriods dampen the immune system response so it's less likely to react
Not as easily provoked
But again this won't stop anaphylaxis from occurring either

Epinephrine is the first line of treatment for anaphylaxis to stop it .

Good luck with the next infusion

Most if they are going to react will react during the next infusion
So fingers crossed
I don't think I said Benadryl would prevent anaphylaxis. It, along with other medications can make reactions less likely to occur and less severe if they do occur. The only guarantee to prevent anaphylaxis is non-exposure.

Farmwife, I truly hope your doctors work something out. It is scary when your child is reacting and I understand that helpless feeling.
04-25-2017, 05:54 PM   #42
Farmwife
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No reaction to Remicade this time
My happy bubble remains intact

I was so happy, I bought us a whole bunch of sweets.

She back on the formula. She lost weight in the month and her appetite plummeted.
No real problem with stomach pain or bm's.

Now that she weaned off most of the pain meds, I'll ask her gi to do the test (gastric emptying test).

Does anyone know how long she has to be off the meds to get the test done?
04-25-2017, 06:01 PM   #43
Maya142
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I think they said it should be about a week. M was not on pain medication when we did the test, so I'm not exactly how long it has to be - she had been off them for about a month by the time we did the test.

I think it would probably be best to ask your GI - she's been off pain meds for several weeks, right? I bet they could do it now.

What are her symptoms, besides weight loss? Does she get full after a few bites? Nauseous? Stomach pain?? Those would be symptoms of Gastroparesis. Some kids also throw up after meals (M did sometimes) but others just get very nauseous.

Very glad she didn't react to Remicade - what a relief!
04-25-2017, 06:45 PM   #44
pdx
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No reaction to Remicade this time
That's such great news! Thanks for the update!
04-25-2017, 06:56 PM   #45
Farmwife
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Maya, she's always starving but only can eat a couple bites and then is full.
Even the formula is slow going but is easier to get in her.
At least it keeps her weight up.
She does get nauseated and yes to a bit of stomach pain but not like an IBD flare.

She can go about 1 to 2 weeks of 80 percent food and is decent but then she goes back down.
05-05-2017, 09:24 PM   #46
Farmwife
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Quick update:
Grace just hit the 28th percentile for height!
Highest she's ever been!

THANK YOU REMICADE!
05-05-2017, 10:29 PM   #47
Maya142
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Wow, congratulations Grace!! How's she doing with weight??

Did you ever get a gastric emptying test scheduled FW?
05-06-2017, 08:05 AM   #48
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Great news!
05-06-2017, 09:44 AM   #49
pdx
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That's so great! My daughter's Remicade dose was increased back in January, and she's growing again too. It's all good, except it seems like she needs new clothes and shoes every 6 weeks!
05-06-2017, 10:40 PM   #50
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That is great news and glad the remicade went smoothly too! Finger crossed for her!!!!
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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.
05-07-2017, 04:07 AM   #51
Jane and Nick
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Woo hoo ! That's wonderful news.
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07-16-2017, 05:38 PM   #52
Farmwife
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Has anyone here received Remicade every 2 weeks?
Did it work?
We're you able to stretch it back out?

Grace's infusion is only lasting about two weeks (3 months in a row)
She's also in a jia and possible ibd flare.
Her rheumatologist put her on a pred burst for 14 days at 30ml.
07-16-2017, 05:41 PM   #53
Maya142
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We did 3 weeks once and 3.5 weeks once. That was with high dose Remicade (20 mg/kg). They generally don't like to go to more frequent than that - we then moved to 28 days.

What dose of Remicade is she on? Perhaps they can up the dose to make it last longer?

There are also other options - Simponi, Cimzia, Stelara.

Actemra and Orencia are approved for certain types of JIA but not IBD.
07-16-2017, 09:05 PM   #54
my little penguin
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Never heard of every two weeks for remicade
Would assume a med change like Maya142
There are other options

Good luck
07-16-2017, 09:11 PM   #55
Maya142
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I've heard of Remicade every two weeks once or twice (like an extra loading dose to get a kiddo back on track) but not indefinitely.

I would assume her next med will depend on the kind if JIA she has. If it's poly JIA, then she could try Actemra or Orencia.

If it's enthesitis related JIA or juvenile spondyloarthritis, then it would make more sense to try Cimzia, Simponi or Stelara (which would all also take care of the IBD).

I know her dx was initially poly JIA but I can't remember what it is now?
07-16-2017, 09:13 PM   #56
Maya142
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Also, have they tested for antibodies recently?
07-16-2017, 11:55 PM   #57
pdx
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Our doctor won't go higher than 10 mg/kg every 4 weeks with Remicade. Hope you can find something that works well for Grace's IBD and arthritis.
07-17-2017, 12:11 AM   #58
Maya142
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Multiple pediatric rheumatologists we have seen will go up to 20 mg/kg every 3-4 weeks for severe JIA.

Our GI, on the other hand, will only go up to 10 mg/kg every 4 weeks.

I guess it's because there have been some "high dose Remicade" trials for JIA/uveitis. There was a trial at Boston Children's (I think) but our rheumatologist just prescribed it off-label since she was aware of the trials.

I don't think there have been trials for doses higher than 10 mg/kg or more frequent infusions (than every 4 weeks) in pediatric Crohn's...but things could have changed since I last checked.
07-17-2017, 12:24 PM   #59
Farmwife
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We did 3 weeks once and 3.5 weeks once. That was with high dose Remicade (20 mg/kg). They generally don't like to go to more frequent than that - we then moved to 28 days.

What dose of Remicade is she on? Perhaps they can up the dose to make it last longer?

There are also other options - Simponi, Cimzia, Stelara.

Actemra and Orencia are approved for certain types of JIA but not IBD.
She's on 10mg/kg of Remicade, Maya.
Insurance fought because they said 10mg every four weeks was high.
I don't think upping will happen.
The Rheumatologist said she will get a split dose every two weeks. (5mg every time).
No he hasn't tested her levels. I didn't ask why. Maybe because they showed up normal before?
07-17-2017, 12:33 PM   #60
Farmwife
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I've heard of Remicade every two weeks once or twice (like an extra loading dose to get a kiddo back on track) but not indefinitely.

I would assume her next med will depend on the kind if JIA she has. If it's poly JIA, then she could try Actemra or Orencia.

If it's enthesitis related JIA or juvenile spondyloarthritis, then it would make more sense to try Cimzia, Simponi or Stelara (which would all also take care of the IBD).

I know her dx was initially poly JIA but I can't remember what it is now?
Grace has enthesitis related JIA.

I meet with the rheumatologist next month. And also the gi.
I'm assuming the gi will run an FC stool test if the pred doesn't bring this flare under control.

I've told the rheumatologist I wanted to hold of on the every 2 weeks until the pred has time to work.
If it doesn't, then we'll talk about a med change vs Remicade every 2 weeks.
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