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Crohn's Disease Forum » Parents of Kids with IBD » Remicade infusion confused


 
03-18-2013, 08:25 PM   #1
my little penguin
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Remicade infusion confused

Ds had another infusion
This time with steroids, Benadryl and Tylenol
No problem during infusion
Afterwards we go to leave
Tongue tingling
So back in we go plus throat burning
Monitored vitals
Released after three hours
His tongue is still tingling now 9 hours after he finished his infusion

Will talk to his allergist soon
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03-18-2013, 08:29 PM   #2
Clash
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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
03-18-2013, 08:30 PM   #3
Momto2girls
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Oh no...huge hugs.
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Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
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03-18-2013, 08:36 PM   #4
AZMOM
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Hmmmmmmmmm I hate the question marks Im certain that is creating for you.......
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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
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Folic Acid
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-18-2013, 08:38 PM   #5
my little penguin
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Doesn't help that he has a croupy thing going on as well right now ....
So the evening cough has us scratch our heads even further .

I really need the manual about now .
03-18-2013, 08:42 PM   #6
TravisN
 
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If he is having this type of reaction they may try giving him more benadryl first. I would also suggest rethinking the steriod issue. He is so young to be on such high powered drugs. My best to you and your family. If he continues on this route they may have to switch his meds.
03-18-2013, 09:26 PM   #7
Tesscorm
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MLP, could the tingly tongue be a side effect of the steroid and/or benedryl instead of remicade? Has he had this combination pre remicade before?

Hugs... it would be so nice to have 'smooth sailing' sometimes! Hope all clears by morning and the allergist can shed some light on it! :ghug;
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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
03-18-2013, 09:37 PM   #8
my little penguin
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HE had tongue tingling Tess - last time with Remicade as well- no steroids that time
He has had Benadryl numerous times before with remicade and for various other reasons.

So far the only two times he has complained of his tongue was last infusion and this infusion.
His tongue was also burning and causing him pain by time I put him to bed - in addition to tingling.

He has alot of other medical "stuff" including severe allergies and asthma so that complicates the otherwise muddy waters a bit.
Hence the decision by the GI to pull in the allergist on this one.
03-18-2013, 10:08 PM   #9
Tesscorm
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I hope he sleeps well tonight and the tingling/burning is gone by tmrw! And hope you're able to get a quick answer from his allergist.
03-18-2013, 10:57 PM   #10
kimmidwife
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MLP
How is he doing? Did they tell you to give him another dose of Benadryl to see if that helps?
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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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.
03-19-2013, 12:12 AM   #11
CarolinAlaska
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Wierd! Tingling and burning make me think of a neuropathy. I hope it goes away before morning. Does drinking water help?
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-19-2013, 03:38 AM   #12
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Hope things settle down quickly! Life would be so much easier with a manual, I agree!
03-19-2013, 06:37 AM   #13
my little penguin
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Gi didn't want Benadryl unless it got worse
If we had to give it then we were to take him to the hospital .
He added tongue pain "like a headache ", still burning
And slight tingling this morning
Plus pain inside one check of his mouth
He did get Zyrtec and albuterol last night and this morning
Going to up date Gi in a bit
Thankfully he sees Neuro next week so I can get there buy in as well
Thinking less allergy at this point
And more ... I have no clue
03-19-2013, 04:24 PM   #14
my little penguin
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Spoke with GI-
We gave benadryl this afternoon per his instructions since DS is still having tongue issues.
hopefully the benadryl will do its thing-
If it continues , gets worse or comes back 48 hours after the infusion ( wed noon) the GI wants to know. Not sure what happens then.........
03-19-2013, 04:55 PM   #15
Jmrogers4
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Sorry nothing to add as I've no experience with remicade or allergies but just wanted to say we thinking of you guys and hope it all gets worked out favorably soon.
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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
03-19-2013, 04:58 PM   #16
kimmidwife
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Did the Benadryl help?
03-19-2013, 05:25 PM   #17
my little penguin
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Benadryl did not work so far and its been an hour-typically only takes 20 minutes to work.
- still tingly and burning on and off- not any worse but not any better.
03-19-2013, 05:48 PM   #18
xmdmom
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Any evidence of a rash in or out of the mouth? Sometimes tingling precedes or occurs with oral inflammation or infection. I really hope the tingling goes away soon!
03-19-2013, 07:07 PM   #19
TravisN
 
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I also had tingling and mouth pain before I started remicade. It was due to my crohns. Doc thought I had an allergy but I was having inflammation in my esophagus, tongue and cheeks. I hope he feels better soon.
03-19-2013, 07:42 PM   #20
jmckinley
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Ugh MLP, so sorry about the symptoms! I don't know if it's a reaction to the remicade or not. Ryan had a reaction on his 7th and 8th infusion. All was smooth sailing before that. On the first, he just had benadryl and tylenol. The next time they added the medrol (steroid) to try to stop it. His started with tongue tingling and throat pain, but quickly progressed to breathing problems, like minutes. Another thing though, it went away quickly after they stopped the remicade. Your son's hasn't gone away, so maybe not a remicade reaction. Ryan has asthma also.

I hope your "team" gets it figured out soon! Hugs!
03-19-2013, 08:18 PM   #21
Tesscorm
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sorry that the tingling hasn't gotten better. Wish I had some advice for you!
03-19-2013, 09:29 PM   #22
kimmidwife
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Sorry it has not improved with Benadryl although that may be a good thing because maybe it shows that it is not part of an allergic reaction and is something else going on. You may want to call the remicade company tomorrow and speak with the nurses. They were wonderful when caitlyn had her reaction.
03-20-2013, 02:40 PM   #23
Tesscorm
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HOpe things have improved today
03-20-2013, 05:02 PM   #24
my little penguin
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Still same
Derm found a broken lesion on the end of his tongue which was still red.

Big consult among his specialists soon
Gi may stop remi
Or space out to 8 weeks At lower dose.

Off to cry
03-20-2013, 05:06 PM   #25
Farmwife
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I'm so sorry to hear this.

HUGS
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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03-20-2013, 05:14 PM   #26
Mylittlesunshine
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MLP big hugs to you both
How your little boy feels better soon x
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03-20-2013, 05:15 PM   #27
xmdmom
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I'm confused...isn't it likely that the tingling tongue is related to the lesion on the tongue?
If this is the case, then it makes other causes (allergy, neuropathy) much less likely, which is good! Am I missing something?

It's definitely awful waiting and not knowing and worrying. Hoping it will turn out to be something very minor.
03-20-2013, 06:54 PM   #28
my little penguin
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If he only had a lesion
But he had throat burning
As well after the infusion
Derm thought the lesion was allergic in nature combine with the tingling and pain.
I don't know
At least three of his specialist maybe four are going to discuss
A plan forward.
03-20-2013, 08:21 PM   #29
Tesscorm
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So sorry he's having this complication! I hope you're going to hear from his specialists soon.

I hope the tingling (and burning?) is lessening a bit???

03-20-2013, 08:47 PM   #30
AZMOM
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MLP - I wish I had something helpful to add......

Instead Im sending hugs!!!

J.
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